Approved AIHW linkage projects

Tranquilising Work Stress: Corporate Climate and Antidepressant Use (EO2022/1/1190)

Applicant: The University of South Australia

Approval valid until: 31 December 2025

The mental wellbeing of Australians is a pressing national issue with almost one in five Australians having a mental health or behavioural condition. It is plausible that a rise in mental health problems and antidepressant & opioid medication use is at least partly attributable to corporate climate and work stress.

This project aims to identify how corporate climate and workplace conditions contribute to Australian employee wellbeing and distress and use of antidepressants and other medications.

The study cohort will consist of individuals from the Australian Workplace Barometer survey aged 18 years and over.

The study cohort will be linked to the Pharmaceutical Benefits Scheme.

Study findings will be used to improve corporate climate and leadership and inform safe work design to prevent mental disorders.

Upper Gastrointestinal Cancer Registry (EO2022/1/1264)

Applicant: Monash University

Approval valid until: 1 December 2025

The Upper Gastrointestinal Cancer Registry (UGICR) is a clinical quality registry that aims to improve the quality of medical care given to Australians with tumours arising in the oesophagus, stomach, pancreas, liver and bile ducts. These cancers are known to have some of the worst prognoses of all cancers.

The study cohort will consist of approximately 6,000 individuals who have been diagnosed on or after 1 January 2016 with gastrointestinal cancer.

The study cohort will be linked to the National Death Index to examine disease‑related mortality.

Study findings will be used to support better clinical care and support better health outcomes for people with upper gastrointestinal cancer.

Hysterectomy, Oophorectomy and Long-term chronic Disease – the HOLD study (EO2022/1/1294)

Applicant: University of Queensland

Approval valid until: 1 December 2025

The long-term health effects of surgery to remove the womb (hysterectomy), often with removal of one or both ovaries (oophorectomy), are unclear because few high-quality studies have been undertaken and important factors such as menopausal hormone therapy (MHT) or surgery indication have been infrequently addressed.

This project aims to explore the adverse long‑term health effects of a hysterectomy and/or oophorectomy. Past studies have revealed that these surgical procedures have been linked to the following adverse long-term health outcomes: cardiovascular disease, cancer, osteoporotic fracture, other chronic illness (for example, dementia, Parkinson’s disease, depression and type 2 diabetes), and, in severe cases, mortality. However, many of these findings have been inconsistent across past research.

The study cohort will consist of approximately 320,000 women from New South Wales, Victoria and Western Australia who have undergone hysterectomy and/or oophorectomy  on or after 1 July 2002. This study also has a control group of approximately 1.3 million Australian women who have not had a hysterectomy.

The study cohort and control group will be linked to the following datasets:

• Medicare Consumer Directory
• Medicare Benefits Schedule
• Pharmaceutical Benefits Scheme
• National Death Index
• Australian Cancer Database
• Several hospital, death and electoral datasets from New South Wales, Victoria and Western Australia.

Study findings will be used to support clinicians by providing more information about the effect of surgery to remove the womb on women’s long-term health.

The effect of overdiagnosis of gestational diabetes on maternal and newborn outcomes (EO2022/1/1315)

Applicant: University of Melbourne

Approval valid until: 1 December 2023

Gestational Diabetes Miletus (GDM) is a dangerous condition that can impact the health of mother and child during pregnancy and the risk of developing type II diabetes in later life. In recent years, the benefits and risks of lowering the threshold for diagnosing GDM has been debated.

This project aims to examine the effects of the change to the diagnostic thresholds for GDM on maternal and newborn outcomes and healthcare utilisation.

The study cohort will consist of 660,000 mothers who gave birth between 2012 and 2018 and their babies, derived from the NSW Perinatal Data Collection and complemented by the NSW Registry of Births, Deaths, and Marriages-Birth Registrations dataset. Women with pre-existing diabetes and women who gave birth to multiple babies are excluded from this study.

The cohort will be linked to the Medicare Benefit Schedule.

Study findings will help determine the impact of lowering the threshold for diagnosing GMD on earlier diagnosis, outcomes for mothers and babies, risk of complications and usage of hospital resources.

Generating evidence for a strong foundation in the early years: using population health data for translational child health, healthcare and policy (EO2022/1/1319)

Applicant: Children’s Hospital Westmead Clinical School, University of Sydney

Approval valid until: 1 March 2026

The period from conception to early adulthood, particularly the early years, sets the foundation for every child’s physical, social, and cognitive development. Despite the importance of this period, the impact of many perinatal and early childhood illness are still unknown, putting children at risk for adverse outcomes in later life.

This project aims to investigate the associations between early life and childhood exposures and long-term health, development, achievement and well-being.

The study cohort will consist of 1,880,000 babies born in NSW from 1 July 2001 and their mothers. Participants will be selected from the NSW Perinatal Data Collection and complemented by the NSW Registry of Births, Deaths, and Marriages-Birth Registrations dataset.

The study cohort will be linked to the following datasets:

• Medicare Consumer Directory
• Pharmaceutical Benefits Scheme
• Medicare Benefits Schedule
• National Death Index
• Disability Services National Minimum Dataset.

Study findings will used to understand the long-term health, developmental and educational impacts of perinatal and early childhood illness and inform decisions about child health.

Prescription medicines used in pregnancy or fertility treatment and congenital heart defects (EO2022/1/1331)

Applicant: The University of Adelaide

Approval valid until: 31 December 2028

Congenital heart disease (CHD) is the most common congenital disorder in newborns, with approximately 8 to 10 cases per 1,000 live births in Australia. An estimated 1 in 10 children with CHD do not survive infancy, and those that do face long-term health risks. There has been substantial research into the underlying genetic factors contributing to CHD, however, there has been less focus on the non-genetic factors, such as medications used in pregnancy and fertility treatments.

The project aims to investigate the associations between CHD and fertility treatments and prescription medicines dispensed to mothers around the time of conception or during pregnancy.

The study cohort will consist of 380,000 babies born in South Australia from 1 January 2002 and their mothers. The cohort will be selected from the South Australian Perinatal Statistics Collection and includes all births at 20 weeks of gestation or more.

The study cohort will be linked to the following datasets:

• Pharmaceutical Benefits Scheme
• Medicare Benefits Schedule

Study findings will be used to understand the relationship between the prevalence of CHD and fertility treatments and medication used at the time of conception and in pregnancy and the prevalence of CHD. The findings could influence policy around medications used in pregnancy and may lead to the prevention of CHD in some babies.

Using data linkage to assess cancer risk, treatments and outcomes among Adolescents and Young Adults (EO2022/1/1334)

Applicant: Canteen

Approval valid until: 31 August 2026

Cancer can have serious effects on anyone, but special problems arise for Adolescents and Young Adults (AYA) for whom cancer can disrupt educational and career pathways and impact negatively on relationships. Data for AYA patients is needed to guide policy, programs and service delivery, and to monitor and evaluate the outcomes for survivors.

This project aims to provide a better understanding of cancer risk and outcomes among AYAs. Analyses will focus on:

1. Sociodemographic characteristics of those diagnosed with cancer
2. Cancer types and treatment
3. Survival outcomes.

The study cohort will consist of people who were diagnosed with cancer from 1 January 2002 with an age of diagnosis of 15-25 years. The control group consists of people who were diagnosed with cancer from 1 January 2002 with an age of diagnosis of 26-39 years. Both groups are drawn from the Australian Cancer Database.

The study cohort and control group will be linked to the following datasets:

• Medicare Consumer Directory
• Medicare Benefits Schedule
• Pharmaceutical Benefits Scheme
• National Death Index
• Australian Cancer Database
• Australian Immunisation Register
• National Hospital Morbidity Database
• National Non-Admitted Patient Emergency Department Care Database
• Several datasets from the Australian Bureau of Statistics.

Study findings will be used to provide a greater understanding of the importance of demographic and socioeconomic factors in the cancer journey for AYAs and those aged 26-39 years. Findings can be used to better focus public policy and programs which will benefit young people with cancer and their families.

45 and Up Study AIR data linkage (EO2022/1/1337)

Applicant: Sax Institute

Approval valid until: 28 February 2027

The 45 and Up Study, Australia’s largest longitudinal cohort study, collects data about a multitude of health and welfare domains directly relevant to middle-aged and older Australians.

This project will enable research that requires immunisation data with 45 and Up Study cohort data.

The study cohort (n= 267,000) consists of individuals, aged 45 years and over, who were randomly selected from the Medicare Consumer Directory. The cohort was recruited between 2005 and 2009.

The study cohort will be linked to the Australian Immunisation Register (AIR).

Study findings will be used to provide greater understanding of the association between immunisation status and socio-demographics; comorbidity; health service utilisation patterns; health behaviours; and outcomes.

A Contemporary Population study on Venous Thromboembolism and Its Short and Long-term Impact on Morbidity and Mortality (EO2022/2/1292)

Applicant: Concord Repatriation General Hospital

Approval valid until: 1 June 2031

Venous thromboembolic (VTE) disease is a worldwide problem, with acute pulmonary embolism (PE) its most severe manifestation. Long-term outcome studies have showed increased 1-year mortality rate after PE may be as high as 25%. Increased long-term risks of recurrent PE, cancer and cardiovascular events have also been reported in patients presenting with acute PE. However, many of these studies have excluded patients with baseline cardiovascular disease, or have not reported this and other baseline comorbidities, making it difficult to understand risks for more contemporary and elderly populations.

This study aims to identify novel modifiable risk factors for the development of VTE and for long-term outcomes after VTE; investigate the role of cardiac procedures in the development of VTE; and explore the use of guideline-recommended medications and outpatient resources. 

The study cohort (n~1,800,000) is drawn from the NSW Admitted Patient Data Collection and consists of patients who have had a hospital admission since 1 July 2000 and were diagnosed with particular ICD-10AM codes and/or underwent particular procedures.

The study cohort will be linked to the following datasets:

• Medicare Benefits Schedule
• Pharmaceutical Benefits Scheme
• National Death Index
• Several NSW hospital and death datasets.

Study findings will be used to assist national and local policy makers, and to improve the long-term management of VTE for Australian patients.

Mapping of population-level cancer treatments using data-derived treatment clusters – NSW based pilot study (EO2022/2/1312)

Applicant: University of Technology, Sydney

Approval valid until: 31 December 2024

Cancer is the major cause of burden of disease in Australia, with significant impacts on individuals, families, and the Australian community. In 2008, Cancer Australia identified a national gap in data for population-level relationships between cancer stage at diagnosis, treatments applied, and outcomes. Cancer Australia developed a program of work to address this gap that includes bringing together information on stage at diagnosis, treatments applied, and outcomes (5-year survival), known as the Stage, Treatment, and Recurrence (STaR) program. As part of the STaR program, Cancer Australia generated ‘Treatment maps’ for the top five high incidence cancers (breast (female), colorectal, prostate and lung cancers and melanoma).  The resulting ‘Treatment Maps’ and associated mapped elements, provide a visual summary of the most common recommended best practice treatments to be applied according to stage at diagnosis and other relevant factors.

This project aims to develop methods which can semi-automate the mapping of treatments for individual cancer types.

The study cohort will consist of any patient aged 18 or over diagnosed with colorectal cancer, and female patients aged 18 or over diagnosed with breast cancer, from January 2011 to December 2011 (inclusive) listed on the NSW Central Cancer Registry.

The study cohort will be linked to the following datasets:

• Pharmaceutical Benefits Scheme
• Medicare Benefits Schedule
• NSW Admitted Patient Data Collection.

Study findings will be used to improve understanding of patterns of treatments applied by cancer type and stage. This understanding will contribute to informed assessments of treatment and to understand population-level variations in cancer treatments and cancer outcomes by stage at diagnosis.

National Echo Database Australia – Linked Data Study (EO2022/2/1338)

Applicant: National Echocardiogram Database Australia (NEDA) Ltd.

Approval valid until: 31 December 2031

National Echocardiogram Database Australia (NEDA) was established in 2015 to answer important questions on the incidence, prevalence and risks associated with pulmonary hypertension (PHT), a serious condition involving increased blood pressure in the lungs, which can lead to heart failure and death. NEDA has confirmed that PHT is more common than previously reported and has poor outcomes. NEDA is now the largest mortality-linked echocardiographic registry in the world. However, the NEDA database has some important limitations and cannot account for important confounders that may influence outcome in patients undergoing echocardiography.

This project aims to utilise linked data to investigate a range of risks, markers, causes, prevalence, hospitalisation, and recurrence of various cardiac conditions.

The study cohort will consist of individuals from the NEDA Master Database 18 years and older who underwent an echocardiograph from 1 January 2001 onwards at participating hospitals and sites across all Australian states and territories.

The study cohort will be linked to the following datasets:

• Pharmaceutical Benefits Scheme
• Medicare Benefits Schedule
• National Death Index
• Various state and territory hospital datasets.

Study findings will be used to address the current limitations of NEDA, including the effect of other conditions that may also influence mortality. This project will also inform recommendations for diagnosis and patient care.

Young people under youth justice supervision and in child protection 2020–21 and subsequent years (EO2022/2/1339)

Applicant: Australian Institute of Health and Welfare

Approval valid until: 31 December 2027

There is a significant body of research showing that children who are involved in child protection services are more likely to enter youth justice supervision than the general population. Understanding the characteristics of children and young people who experience both child protection and youth justice supervision would provide valuable information for early intervention programs and assist policy makers and practitioners develop and implement evidence-based programs that adequately target children and young people at risk of social exclusion.

This project aims to report on the characteristics and child protection services received of justice-involved young people who experienced child protection.

The study cohort will be drawn from the Youth Justice National Minimum Data Set (YJ NMDS) and the Child Protection National Minimum Data Set (CP NMDS).

The study cohort will be linked to the Medicare Consumer Directory using deterministic linkage methodology.

Study findings will be used to help support staff, case workers, and policy makers to get the best outcomes for these children and young people. Data from this project are also used for the National Framework for Protecting Australia’s Children (NFPAC) indicators.

Towards an Australian COVID-19 Register and linked data set (EO2021/2/1232)

Applicant: Australian Institute of Health and Welfare

Approval valid until: 30 June 2026

COVID-19 represents an unprecedented health emergency in Australia. The pandemic has had substantial individual, health system, and broader social and economic effects. Emerging evidence of the medium and long-term effects of COVID-19 (long COVID) presents a need for immediate information and ongoing monitoring of health outcomes and health system needs.

This project aims to develop a national register of positive COVID-19 cases recorded in the first 3 years (pending data supply) after the initial case was detected in Australia.

The study cohort will consist of individuals who returned at least one positive test result for COVID-19 (SARS-CoV-2 positive) at the time of data extract. The control group will consist of individuals who did not receive a positive test result for COVID-19 at the time of data extract. The control group will be extracted from the Medicare Consumer Directory.

The study cohort and control group will be linked to the following datasets:

• Medicare Consumer Directory
• Pharmaceutical Benefits Scheme
• Medicare Benefits Schedule
• National Death Index
• National Interoperable Notifiable Disease Surveillance System
• Australian Immunisation Register
• National Hospitals Morbidity Database
• National Non-Admitted Patient Emergency Department Care Database
• National Public Hospital Establishments Database
• National Aged Care Data Clearinghouse
• State and territory Notifiable Disease databases.

Study findings will be used to inform service planning and guidelines for the treatment and management of COVID-19, improving immediate, medium, and longer-term health outcomes.

Evidence to inform policy and practice that promotes child health, development and wellbeing: the NSW Child E-Cohort Project (EO2021/2/1236)

Applicant: University of New South Wales

Approval valid until: 5 May 2026

Promoting the healthiest start to life – even before conception – is fundamental to optimising children’s health, developmental, social, and economic capability. The most rapid period of neural development for sensory, language and cognitive functioning occurs in the first 5 years of life. In these early years, the health, social, and economic circumstances of a child, their family or community can impact a child’s ability to reach their potential. It is important to understand risk and protective factors for healthy child development to improve child health, development, and wellbeing at the population-level.

This project is designed to gain a better understanding of the health, social, and economic circumstances of children and families, including their health and human services use, and how these experiences relate to the health, development, and wellbeing of children and their families.

The study cohort will consist of both a child and a parent cohort. The child cohort will consist of all children in NSW who were born between 1 July 2001 to the present day. This will include all children born in NSW (including live births and stillbirths) and children who relocated to NSW. The parent cohort will consist only of parents whose children were born in NSW.

The study cohort will be linked to the following datasets:

• Medicare Consumer Directory
• Pharmaceutical Benefits Scheme
• Medicare Benefits Schedule
• National Death Index
• Australian Immunisation Register
• Data Over Multiple Individual Occurrences (DOMINO; Centrelink Services)
• Australian Early Development Census
• National Assessment Program Literacy and Numeracy (NAPLAN)
• Australian Bureau of Statistics Cause of Death Unit Record File
• Several NSW health, housing, justice and child protection datasets.

The study findings will be used to generate real-world evidence to inform policy and practice to better health, development, and wellbeing outcomes for all children in NSW, particularly disadvantaged children.

Depth of anaesthesia and long-term survival in elderly surgical patients: The Balanced Anaesthesia Trial long-term follow-up study (EO2021/2/1246)

Applicant: Royal Melbourne Hospital

Approval valid until: 2 February 2022

The Balanced Anaesthesia Study was conducted between December 2012 and December 2018 in Australia, New Zealand, the United Kingdom, Ireland, the Netherlands, the United States and China. Patients aged 60 years and over, with significant co-morbidity and who had surgery lasting more than two hours, were randomised to 2 study groups: deep or light general anaesthesia. Researchers measured mortality rates, included all causes, over a 1-year period. While the 1-year follow-up results showed no significant differences in the mortality or incidence of complications between the groups, there were some differences in post-operative recovery suggesting that longer-term outcomes should be examined.

The aim of this project is to examine long-term (up to 8 years) post-operative survival outcomes among Australian patients from the Balanced Anaesthesia Study.

The study cohort will be drawn from hospitals that participated in the Balanced Anaesthesia Study.

Data will be linked to the National Death Index.

Healthcare professionals can use the study findings to establish whether the depth of general anaesthesia has any effect on long-term survival outcomes in at-risk patient populations.

The SCRIPT Trial: a study of DNA testing to tailor bowel cancer screening in primary care (EO2021/2/1248)

Applicant: The University of Melbourne

Approval valid until: 1 August 2027

Colorectal cancer (CRC) is the third most common cancer worldwide. Currently, risk assessment for CRC is based on an individual’s age and family history, but this has yielded mixed results. Approximately 1 million people at risk of CRC undergo expensive and invasive colonoscopy screening, in addition to approximately 400,000 Australians at increased risk of CRC who do not undergo colonoscopy screening. Previous research has developed and validated a novel polygenic risk score, based on 45 single nucleotide polymorphisms (SNPs), which can increase the accuracy of predicting future CRC risk.

SCRIPT (SNP Cancer Risk Prediction Trial) is a randomised controlled trial designed to test the implementation of a novel polygenic risk score (genomic test) to tailor CRC screening in primary care.

The present study will recruit 218 participants aged between 45 and 70 years. Participants will be recruited from approximately 10 general practice clinics in Melbourne through the University of Melbourne practice-based network. Purposive sampling will also be used to ensure a diversity of clinics and patients.

The study cohort will be linked to the following datasets:

• Medicare Benefits Schedule
• National Cancer Screening Register–National Bowel Cancer Screening Program
• Victorian Admitted Episodes Dataset.

Study findings will establish whether a polygenic risk score is effective in identifying CRC risk and the most appropriate screening test required. Findings will then have the potential to increase the proportion of the population undergoing the correct screening test at the correct time and therefore increase early detection of CRC in Australia.

Prevalence, prognosis and management of autoimmune encephalitis in Australia: a national data-linkage approach (EO2021/2/1249)

Applicant: St Vincent’s Hospital Melbourne

Approval valid until: 1 January 2025

Autoimmune encephalopathies (AE) are a group of neurological disorders causing psychiatric disturbance, seizures, amnesia, and language disturbance. These symptoms are often severe and account for up to 25 per cent of all cases of refractory epilepsy.

This project has the following aims:

• estimate the prevalence of AE in Australia
• characterise the prognosis of AE in terms of epilepsy and disability
• determine patterns of associated cancers
• identify therapies that contribute to improved outcomes.

The study cohort will consist of approximately 5,000 patients with AE. A validation cohort, consisting of between 100 and 200 known AE cases and between 200 and 300 mimickers, will be used to validate the outcomes and covariates of the study cohort. The validation cohort will only be linked to state/territory hospital and emergency datasets.

The study cohort will be linked to the following datasets:

• Medicare Consumer Directory
• Pharmaceutical Benefits Scheme
• Medicare Benefits Schedule
• National Death Index
• Australian Cancer Database
• Disability Services National Minimum Dataset
• Several state/territory hospital, pathology, and educational datasets.

Study findings will facilitate the development of specialised rehabilitation programs for AE in Australia. Healthcare professionals can use the study findings to inform the early detection of AE and the subsequent care and management of AE.

Tasmanian Longitudinal Health Study (TAHS) – NDI linkage (EO2021/2/1250)

Applicant: The University of Melbourne

Approval valid until: 20 November 2021

Chronic obstructive pulmonary disease (COPD) makes breathing difficult and reduces quality of life. People are more likely to get COPD from the age of 60 onwards. However, the reasons for this are still not yet known. Globally, over 300 million people suffer from COPD, leading to 3 million deaths each year. In Australia, COPD is the third leading specific cause of total disease burden.

The aim of this project is to establish early life and lifetime risk factors for COPD and to identify those who are likely to develop pre-COPD or COPD, while investigating the severity of disease outcomes.

The study cohort will consist of study participants from the Tasmanian Longitudinal Health Study while excluding those who have withdrawn and any deceased participants.

The cohort will be linked to the National Death Index.

Healthcare professionals can use the study findings to identify individuals at risk of developing COPD, enabling early intervention. Study findings will also enable healthcare professionals to improve the care and management of COPD, maximising quality of life among COPD patients.

Impacts on survival of participation in the Beating Heart Problems secondary prevention program for cardiac patients (EO2021/2/1251)

Applicant: Australian Centre for Heart Health

Approval valid until: 31 December 2024

In Australia, coronary heart disease (CHD) is the largest single cause of death and leading specific cause of disease burden. People who survive an acute coronary event are at an increased risk of subsequent coronary events and, in severe cases, death. It should be noted that up to 90 per cent of the overall risk of acute myocardial infarction is attributable to modifiable risk factors. Management of both behavioural and psychosocial risk factors is crucial for patients in the year following a cardiac event. The Beating Heart Problems Program was developed to address the gaps in secondary preventative care previously available to cardiac patients in Australia. The program was designed to equip patients with the behavioural, psychosocial, and cognitive skills to self-manage their health behaviours and mental health.

This project has the following aims:

• identify mortality status of the 275 patients from the original Beating Heart Problems study
• evaluate the impact of the Beating Heart Problems program on long-term survival outcomes
• investigate the impacts on survival outcomes of other patient characteristics, namely psychosocial, behavioural, sociodemographic, and medical characteristics.

The study cohort and a control group will be derived from the initial randomised controlled trial of the Beating Heart Problems program conducted from 2007 to 2009.

The study cohort and the control group will be linked to National Death Index.

Healthcare professionals can use the study findings to guide and inform the care and management of coronary heart disease patients.

Long term management and outcomes following Acute Coronary Syndromes in Australia (the CONCORDANCE study) (EO2021/2/1254)

Applicant: ANZAC Research Institute

Approval valid until: 30 April 2030

Cardiovascular disease (CVD), including coronary heart disease (CHD) and stroke, is a leading cause of death worldwide and is responsible for 17.9 million deaths per year globally. Many of these events are preventable through the provision of adequate medical follow-up and secondary preventative care. To date, no large-scale studies have been undertaken to examine the long-term care and management of CVD as well as factors associated with any deficits in care. The CONCORDANCE registry represents a unique opportunity to focus on longer-term outcomes and follow-up care received by CVD patients in Australia. Healthcare professionals can use data from this registry to inform healthcare policy and future clinical practice.

This project investigates long-term prescribed medication use, resource utilisation, and mortality rates among patients following an acute coronary event.

The study cohort will be extracted from the CONCORDANCE registry and will consist of patients 18 years and older who presented with symptoms consistent with acute cardiac ischemia for greater than 10 minutes within 24 hours of presentation to a hospital plus one of the following characteristics: ECG changes, elevated enzymes, documentation of Coronary Artery Disease (CAD) or documentation of two or more high risk features for CAD.

The cohort will be linked to the following datasets:

• National Death Index
• Medicare Benefits Schedule
• Pharmaceutical Benefits Scheme.

Study findings will enable healthcare professionals to improve the long-term management of acute coronary syndromes.

Predicting the population health economic impact of current and new cancer treatments (PRIMCAT) (EO2021/2/1255)

Applicant: The University of Melbourne

Approval valid until: 1 June 2025

Novel medicines have changed the treatment landscape of many cancers and increased the complexity of the available treatment options. Although clinical practice guidelines synthesise the best available evidence to guide decision making for clinicians and patients, treatment patterns beyond the first-line setting are often missing or largely unknown in Australia. Consequently, though several studies aim to assess the healthcare costs for various cancer types, they often do not report disease stage-specific costs or span the entire care pathway following diagnosis. Moreover, despite overall improvements in cancer survival due to earlier diagnosis and novel treatments, socioeconomic status and other demographic factors remain a major predictor of cancer outcomes in Australia. Few studies have integrated knowledge of treatments received by patients, which greatly influence clinical outcomes and is key to addressing disparities in access and provision of care.

PRIMCAT is a multi-institutional research program established in 2020 targeting the provision of real-world data to inform Health Technology Assessment (HTA) in Australia. PRIMCAT aims to address the health policy concern raised by the Medical Research Future Fund and focuses on improving cancer services by utilising real-world data to analyse patterns of care provision, their health economics implications, as well as their associated cancer outcomes and disparities.

The study cohort will be derived from the Victorian Cancer Registry and will consist of all adults aged 18 years and over who were diagnosed in Victoria between 2010 and the present day with one of the following cancers: colorectal, lung, melanoma, prostate, breast, acute lymphoblastic leukaemia, and chronic lymphocytic leukemia.

The cohort will be linked to the following datasets:

• Pharmaceutical Benefits Scheme
• Medicare Benefits Schedule
• National Death Index
• Several Victorian cancer and hospital datasets.

Healthcare professionals can use the study findings to establish effective interventions aimed at addressing inequalities and improving survival for all cancer patients.

Ovarian cancer: investigating the Variation in care and survival, Aetiology and Risk factors to Improve outcomes in Australia via National data linkage (the OVARIAN study) (EO2021/2/1256)

Applicant: QIMR Berghofer Medical Research Institute

Approval valid until: 31 December 2025

In the next 5 years, nearly 8,000 Australian women will be diagnosed with ovarian cancer and almost 5,000 will die from the disease. Notably, current data suggest Aboriginal and Torres Strait Islander women are 1.4 times as likely to develop ovarian cancer as non-Indigenous Australian women. However, mortality rates are similar. Additionally, even though Australia has one of the highest ovarian cancer survival rates in the world, a study in 2005 reported lower survival associated with greater socioeconomic disadvantage and regional–remote residence. Research investigating the underlying reasons for such variation is critical to eradicate disparities in health outcomes for Australian women.

This study has the following aims:

• describe the diagnostic pathways travelled by women and the patterns of care they receive after diagnosis
• assess variation between Indigenous and non-Indigenous Australian women and between those from English and non-English-speaking backgrounds based on patient age, comorbidity, geography, and socioeconomic group
• answer a wide range of questions relating to aetiology, diagnosis, treatment, and survival.

The study cohort will consist of all individuals diagnosed with invasive ovarian cancer and/or diagnosed with borderline ovarian tumours since 1984 (in WA) and since 1995 (elsewhere in Australia). A control group will be drawn from the Medicare Consumer Directory.

Data will be linked to the following datasets:

• Medicare Consumer Directory
• Pharmaceutical Benefits Scheme
• Medicare Benefits Schedule
• National Death Index
• Australian Cancer Database
• NSW, SA, Vic, and WA BreastScreen datasets
• Several state/territory birth and cancer registries
• Several state/territory hospitals, perinatal, and notifiable diseases datasets.

Study findings will inform the development of prevention programs by identifying high-risk groups that might benefit from screening and early detection.

Post-Tuberculosis Mortality New South Wales (EO2021/2/1259)

Applicant: St. Vincent’s Hospital, Sydney

Approval valid until: 30 June 2024

Tuberculosis (TB) is a leading cause of death worldwide. Even after microbiologic cure, survivors are at a greater risk of long-term morbidity and mortality compared with individuals who have never had TB. Poor reporting tools and a lack of routine follow-up after TB treatment contribute to the current poor level of understanding of post-TB mortality. In Australia, the median and long-term length of survival after TB diagnosis and treatment is unknown. Any patient who dies after the completion of TB treatment is not known because this data are not reported to the TB program in NSW or any other Australian state. Determining the number of TB patients who die after receiving TB treatment is an important component in evaluating the long-term success of TB treatment programs.

This study will assess the impacts of TB on long-term mortality among children and adults diagnosed with TB in New South Wales. It will also determine if there is a significant difference in the survival rate following a diagnosis of TB compared with non-typhoid salmonella and influenza. These last two diseases, in addition to TB, are also reported to the NSW Public Health Unit.

The study cohort will be extracted from the New South Wales Notifiable Conditions Information System (NCIMS). A control group (non-typhoid salmonella and influenza cases) will also be extracted from the NCIMS.

The study cohort and the control group will be linked to the National Death Index.

Study findings will guide and inform post-TB treatment guidelines as well as the care and management of TB patients.

Physical and mental health outcomes in people who have a disability: a national longitudinal cohort study 2010-2019 (EO2021/2/1263)

Applicant: NDIS Quality and Safeguards Commission

Approval valid until: 30 April 2030

Disability and health have a complex relationship – people with disability are more likely to develop acute and chronic health conditions. People with health conditions are more likely to develop disability. A recent AIHW report found that Australians with disability are 3 to 4 times more likely to have a mental health condition compared with people without disability. In 2019, the NDIS Quality and Safeguards Commission built a linked Disability Services-Mortality dataset and reported Australian mortality trends for people receiving specialist disability support services. This report found that people using specialist disability services in Australia had a mortality rate 4.7 times as high as the general population. The social and economic costs of these poor health outcomes for individuals with disability and their carers as well as for the healthcare system can be substantial.

This study aims to identify trends and patterns of acute and chronic physical and mental health risks and related health service use among individuals with disability compared with those without disability.

The study cohort will be drawn from the Disability Services National Minimum dataset and will consist of all individuals who received a disability service between 1 July 2010 and 30 June 2019.

Data will be linked to the following datasets:

• Medicare Consumer Directory
• Pharmaceutical Benefits Scheme
• Medicare Benefits Schedule
• National Death Index
• Several national hospital databases.

This study will provide evidence about factors that contribute to poor health outcomes in people with disability. This information can then be used to inform practice, quality, and governance processes for agencies that support people with disability.

Investigating adverse events related to NBCSP colonoscopies (EO2021/2/1273)

Applicant: Australian Institute of Health and Welfare

Approval valid until: 31 December 2023

The National Bowel Cancer Screening Program (NBCSP) was rolled out in 2006. The program is managed by the Department of Health in partnership with state and territory governments. To participate, invitees complete the screening test and post it to the NBCSP pathology laboratory for analysis. Participants with a positive screening result are advised to consult their Primary Healthcare Practitioner to discuss further diagnostic assessment– in most cases, this will involve a colonoscopy.

The NBCSP requires all aspects of the screening pathway to be monitored. Data are collected electronically and from forms completed and returned to the NBCSP Register. However, form return is not mandatory, which means outcome monitoring data (including for adverse events related to colonoscopy) are not always complete. In November 2019, the NBCSP register was moved into the National Cancer Screening Register (the NCSR). The NCSR is routinely linked to the Medicare Benefits Schedule to determine if people eligible for NBCSP screening have recently had a colonoscopy. While this has improved the completeness of NBCSP-related colonoscopies performed in private hospital settings where an NBCSP form was not completed, information about colonoscopy findings or adverse events associated with the colonoscopy are not available. Additionally, NCSR linkage with the Medicare Benefits Schedule has not improved understanding of colonoscopies performed in public hospital settings where an NBCSP form was not completed.

This project aims to gain a better understanding of NBCSP-related colonoscopies and adverse events. This project is a pilot study to learn the strengths and limitations of possible linkages to admitted patient care data for improving fact-of-colonoscopy – and outcomes data (including adverse events) – for colonoscopies following a positive NBCSP screening test.

The study cohort consists of people eligible to participate in the NBCSP and who had a positive screening test result between 1 July 2010 and 30 June 2018 and who also had one of the following from 1 July 2010 to the most recently recorded event: an admission for colonoscopy or a hospital-admitted adverse event related to the colonoscopy procedure or an emergency departure presentation related to the colonoscopy.

The study cohort will be linked to the following datasets:

• National Death Index
• NBCSP data in the National Cancer Screening Register
• National Hospitals Morbidity Database
• National Non-Admitted Patient Emergency Department Care Database.

Monitoring the performance, quality and safety of Australia’s cancer screening programs is important to ensure that Australians have access to effective, high-quality, and safe screening. Healthcare professionals can use the study findings to further improve bowel cancer screening procedures and programs.

Australian Stroke Clinical Registry (AuSCR) (EO2021/3/1262)

Applicant: The Florey Institute of Neuroscience and Mental Health

Approval valid until: 01 June 2026

This project is a refreshed application for a previous project: EO2013/2/16.

In Australia every year, over 50,000 people suffer a stroke. Of this figure, two thirds experience a stroke for the first time, while one third die soon afterwards. In those who survive, many will have varying degrees of permanent disability and other complications. Very little is known about the quality of stroke care and patient health outcomes. The Australian Stroke Clinical Registry (AuSCR) provides standardised data that can be used to monitor, promote, and improve the quality of acute stroke/transient ischaemic attack (TIA) care in hospitals.

The aim of the AuSCR is to improve the quality of stroke care and patient outcomes. The AuSCR aims to track the delivery of care for patients with stroke in acute hospitals while providing a mechanism to guide and monitor any improvements in the quality of care over time.

The study cohort will be drawn from the AuSCR.  

Data will be linked to the National Death Index.

Study findings will facilitate updates to the AuSCR while guiding and informing future improvements to the care and management of stroke patients.

GenesisCare Outcomes Registry (GCOR) (EO2021/3/1265)

Applicant: GenesisCare Australia

Approval valid until: 2 September 2030

GenesisCare Cardiology is the largest group practice of cardiologists in Australia. It provides healthcare services to over 220,000 cardiovascular disease patients annually. GenesisCare Cardiology also maintains an outcomes registry consisting of clinical health information and patient outcomes such as quality of life. Healthcare professionals use this outcomes registry to tailor treatments to meet patient needs, maximising treatment outcomes and quality of life.

One of the primary outcomes measured is all-cause mortality. Historically, time-consuming and unreliable methods have been used to examine this outcomes measure during patient follow-up. This project aims to enhance patient care and treatment outcomes by measuring survival outcomes and improving the assessment of all-cause mortality.

The study cohort will consist of all patients, aged 18 years and older, from GenesisCare Cardiology Centres.

Data will be linked to the National Death Index.

Healthcare professionals can use the study findings to identify patient survival outcomes and mortality rates while evaluating the effectiveness of treatment care and management programs.

Improving cardiovascular health MAnaGement In people with advance Chronic Kidney disease (IMAGICK) (EO2021/3/1279)

Applicant: The University of Sydney

Approval valid until: 10 March 2025

Chronic kidney disease (CKD) is an independent risk factor for cardiovascular disease where suboptimal cardiovascular management hastens progression of CKD to kidney failure. CKD disproportionally affects people with low health literacy, those living in lower socioeconomic areas, ethnic minorities, and individuals with multimorbidity. The clustering of these social determinants of health has created major health inequities in people requiring treatment for CKD. Moreover, clinical management of cardiovascular disease is difficult in the CKD population. People with advanced CKD often do not develop the classic symptoms of angina because of uraemia, physical limitations, diabetes, neuropathies, and other factors. Cardiovascular medications and therapies are largely untested in people with CKD as most cardiovascular clinical trials exclude people with kidney disease. The underlying mechanisms where cardiovascular disease develops in people with CKD are still not entirely understood and specific cardiovascular therapies for CKD have yet to be discovered. Additionally, mental health conditions impact engagement with healthcare, with depression and anxiety affecting at least 20 per cent of people with CKD in Australia, increasing the risk of death and hospitalisation.

This project aims to assess the current delivery of cardiovascular medications and therapies in people with advanced CKD and to evaluate access to kidney transplantation for people with mental health conditions.

The study cohort consists of all individuals who initiated kidney replacement therapy in Australia between 1 January 2002 and 31 December 2014.

The study cohort will be linked to the following datasets:

• Pharmaceutical Benefits Scheme
• Medicare Benefits Schedule
• Australian and New Zealand Dialysis and Transplant Registry.

Healthcare professionals can use the study findings to improve pathways to kidney transplantation while maintaining quality of life and maximining survival outcomes among CKD patients.

QSkin Genetics II (EO2021/3/1281)

Applicant: QIMR Berghofer Medical Research Institute

Approval valid until: 31 December 2031

The original QSkin study was launched in November 2010. A random sample of 200,000 Queensland men and women aged between 40 and 69 years were invited to participate. Overall, 43,794 individuals were recruited. The baseline survey collected information on phenotype, family history, sun exposure, medical history, and other salient features. This project increases the size of the original QSkin cohort by recruiting an additional 8,276 Australians in 2019.

This project aims to derive measures of absolute and relative risk for basal cell carcinoma (BCC), squamous cell carcinoma (SCC) and melanoma associated with phenotypic, clinical, and environmental factors. Secondary aims are to estimate the burden of skin cancer, quantify the effects of protective behaviours, and develop tools for predicting risk of melanoma and other skin cancers.

The study cohort will be linked to the following datasets:

• National Death Index
• Australian Cancer Database.

Study findings will provide important information about key risk factors for skin cancer. Study findings will also contribute to the development of a risk assessment tool for melanoma which clinicians can use to identify individuals at risk of developing melanoma. Clinicians can then target interventions accordingly to reduce the risk of melanoma and other related poor health outcomes.

Understanding the use of healthcare services by ex-serving Australian Defence Force (ADF) members (EO2021/3/1283)

Applicant: Australian Institute of Health and Welfare

Approval valid until: 01 August 2024

This project forms part of the Veterans’ Health and Welfare: whole-of-population approach program of work. Current serving ADF members have access to specific Defence healthcare services as a condition of service. Ex-serving ADF members are no longer eligible for this provision, including MBS-subsidised services following discharge. It is important to build a picture of the health service usage of ex-serving ADF members following discharge from the ADF. Similarly, the Department of Veteran Affairs (DVA) has extensive information on the health and welfare status of their clients (estimated to be about 20% of all veterans), and their use of DVA-funded health services. However, the use of MBS-subsidised health services by veterans who are and are not DVA clients is largely unknown.

This project has the following aims:

• explore patterns of healthcare service usage by ex-serving ADF members, including usage of the Medicare Benefits Scheme and the DVA National Treatment Account service
• compare health service usage between ADF members who have had interactions with DVA with those who have not
• compare health service usage patterns with the Australian population.

The study cohort will consist of all ex-serving ADF members with at least one day of service between 1 January 1985 and 31 December 2020.

The cohort will be linked to the following datasets:

• Medicare Consumer Directory
• Medicare Benefits Schedule
• National Death Index
• Several Department of Defence datasets
• Several Department of Veteran Affairs datasets.

Study findings will contribute towards improved health outcomes for all ex-serving ADF members by identifying healthcare needs and assisting in the development and implementation of targeted evidence-based policies and programs.

Privacy Preserving Record Linkage for Western Australian Birth Defects and Australian Pharmaceutical Benefits Scheme Claims Data (EO2021/4/1206)

Applicant: Western Australian Register of Developmental Anomalies, WA Department of Health

Approval valid until: 31 December 2024

Despite the widespread use of medication to treat various health conditions during pregnancy such as infections, asthma, hypertension, and depression, there is little guidance available to inform clinical practice.

This study investigates the effects of medicine exposure in pregnancy.

The aim of this study is to provide information about birth outcomes and exposure to prescription medicines prior to and during pregnancy, including the types and number of medicines prescribed, to assess the safety of medicine use in pregnancy.

The study cohort will consist of women who had a live or stillbirth recorded on the WA Midwives Notification System (MNS) or a termination of pregnancy for foetal anomaly recorded on the WA Register of Developmental Anomalies (WARDA-birth defects) between 2012 and 2019.

Data will be linked to the following datasets:

• Pharmaceutical Benefits Scheme
• WA Midwives Notification System
• WA Register of Developmental Anomalies.

Study findings will guide and inform safe prescribing practices during pregnancy.

Congenital Heart Alliance of Australia and New Zealand Congenital Heart Disease Registry (CHAANZ CHD Registry) (EO2021/4/1280)

Applicant: Heart Research Institute

Approval valid until: 31 December 2025

This study investigates survival outcomes and mortality rates among adult congenital heart disease patients. A study cohort will be drawn from an Australian Congenital Heart Disease Registry.

The study cohort will be linked to the National Death Index.

Study findings will enable healthcare professionals to obtain a better understanding of adult congenital heart disease. Findings will also guide and inform evidence-base practice guidelines for the care and management of congenital heart disease.

PanLink: diagnosis and management of pancreatic cancer (EO2021/4/1290)

Applicant: QIMR Berghofer Medical Research Institute

Approval valid until: 31 December 2024

This study aims to establish a data asset containing records of new-onset diabetes patients and those with pancreatic cancer. Additional study aims include:

• identify the risk of pancreatic cancer in new-onset diabetes patients
• determine the extent, causes, and consequences of diagnostic delay
• understand the extent, causes, and consequences of variation in the management of pancreatic cancer.

The study cohort will consist of approximately 900,000 patients with new-onset diabetes and approximately 30,000 patients with pancreatic cancer. The cohort will be drawn from the following datasets:

• National Diabetes Services Scheme
• Medicare Benefits Schedule
• Pharmaceutical Benefits Scheme
• Australian Cancer Database.

The cohort will be linked to the following datasets:

• National Death Index
• Australian Cancer Database
• National Diabetes Services Scheme
• Medicare Benefits Schedule
• Pharmaceutical Benefits Scheme.

Healthcare professionals can use the data asset to guide and inform decisions about the treatment and management of pancreatic cancer – particularly in patients with new-onset diabetes.

Monitoring HPV vaccine impact among key Australian populations (EO2021/4/1297)

Applicant: The Royal Women’s Hospital

Approval valid until: 31 December 2022

In 2007, Australia became one of the first countries to implement a National HPV Vaccination Program. Following the implementation of this program, surveillance data have provided growing evidence for the population-level benefits of HPV vaccination in Australia.

This study aims to measure the prevalence and correlates of HPV infection within two key Australian populations at risk of HPV-related disease.

The study cohort will consist of people from populations of interest who received sex transmitted infection screening from several pathology labs. The populations of interest are:

• women aged between 16 and 25 years
• men aged 16 years and older who have sex with other men.

Pathology data will be linked to the Australian Immunisation Register.

Healthcare professionals can use study findings to further monitor the effectiveness of the HPV Vaccination Program while also monitoring cervical cancer prevalence rates.

Adolescent and young people CancER Survivorship (EO2021/4/1298)

Applicant: University of New South Wales

Approval valid until: 1 October 2026

Adolescent and young adult cancer patients have distinct treatment needs due to the types of cancer they present and the life stage at which the cancers typically occur. For example, compared with older adults, haematopoietic and germ-cell cancers and melanoma are the most common cancers among adolescents and young adults. In addition, adolescents and young adults are less likely to experience epithelial cancers.

Unfortunately, despite the high prevalence of cancer among adolescents and young adults, no well-established care and management models exist for this vulnerable population.

The purpose of this study is to develop an evidence base that healthcare professionals can use to inform decisions about the care and management of cancer among adolescents and young people.

Specific study aims include:

• identify patients at risk of long-term physical and psychological morbidity
• characterise the long-term health service use
• quantify direct healthcare costs to individuals and the health system
• investigate reproductive outcomes and the use of fertility preservation among patients using cryopreserved gametes and embryos.

The study cohort will consist of all individuals, aged 15 to 39, diagnosed with an invasive or in-situ cancer. The NSW Centre for Health Record Linkage will prepare the cohort by extracting cancer cases from the ACT and NSW cancer registries. The AIHW will prepare a control group by extracting matched data from the Medicare Consumer Directory.

The AIHW will link the study cohort and the control group to the following datasets:

• National Death Index
• Medicare Benefits Schedule
• Pharmaceutical Benefits Scheme
• Data Over Multiple Individual Occurrences (DOMINO; Centrelink Services)
• Herceptin data.

Study findings will contribute to the development of an evidence base that healthcare professionals can use to better meet the distinct treatment needs of adolescents and young people with cancer.

Long-term healthcare service utilisation and costs of care following allogeneic blood and marrow transplantation in NSW, Australia (EO2021/4/1299)

Applicant: Royal North Shore Hospital

Approval valid until: 1 December 2023

This study will examine long-term healthcare service use and costs following allogeneic Blood and Marrow Transplant (BMT).

Specific aims include:

• describe and quantify health service use among long-term allogeneic BMT survivors
• quantify health service costs of long-term allogeneic BMT survivors
• identify demographic and clinical factors that affect healthcare use and cost.

The NSW Centre for Health Record Linkage will extract the study cohort (1,478 patients) from the Australasian Bone Marrow Transplant Recipient Registry.

Data will be linked to the following datasets:

• Medicare Benefits Schedule
• Pharmaceutical Benefits Scheme.

Healthcare professionals can use the study findings to develop an evidence base that will guide and inform the long-term care and management of BMT patients. This evidence base will also enable healthcare professionals to reduce adverse health outcomes and maximise quality of life among BMT patients.

An overview of treatment provided to children and adolescents with ADHD in Australia (EO2021/4/1300)

Applicant: University of Queensland

Approval valid until: 22 September 2023

In 2019, Attention Deficit Hyperactivity Disorder (ADHD) affected an estimated 281,200 children and adolescents in Australia. Recent research examining those treated at Brisbane Child and Youth Mental Health Services (CYMHS) community clinics found that young people with neurodevelopmental disorders (ADHD and Autism Spectrum Disorder) had poorer behavioural, attention and social outcomes compared with those who had emotional disorders (for example, depression and anxiety). Clinical trials of medications for children and adolescents with ADHD have generally yielded favourable treatment outcomes.

This study examines treatment outcomes among children and adolescents with ADHD.

The study cohort will consist of children and adolescents (aged between 5 and 18 years), managed by the public system between 2013 and 2021, and who either received a diagnosis of ADHD or whose history of prescribed medication is consistent with a diagnosis of ADHD.

Data will be linked to the following datasets:

• Medicare Benefits Schedule
• Pharmaceutical Benefits Scheme
• National Death Index.

Healthcare professionals can use the study findings to guide and inform models of care and management for ADHD among children and adolescents.

Quality improvement in primary care to prevent hospitalisations and improve Effectiveness and efficiency of care for people Living with heart disease (QUEL) (EO2021/4/1304)

Applicant: University of Sydney

Approval valid until: 31 December 2026

Cardiovascular disease (CVD), including coronary heart disease (CHD) and stroke, is the leading cause of death and disease burden globally. In 2016, the Federal Government announced it would work towards introducing a new Quality Improvement Practice Incentive Program (QI PIP). QUEL is a randomised controlled trial that evaluates the effectiveness of quality improvement programs in primary care.

This study assesses whether a quality improvement program, implemented in primary care, reduces CVD hospitalisations and improves CVD risk factors and medication adherence.

The study cohort will be drawn from 51 participating general practices across Australia. Eligible participants will be individuals over the age of 18, who have a documented diagnosis of CVD in their primary care records, and who have visited their general practitioner at least once in the past 12 months.

Data will be linked to the following datasets:

• Medicare Benefits Schedule
• Pharmaceutical Benefits Scheme
• National Death Index.

Study findings will provide robust data about whether quality improvement programs reduce hospitalisations and costs in patients with CHD.

Health and welfare data analysis to support the Defence and Veteran Suicide Royal Commission and ongoing DVA-AIHW veterans’ work program (EO2021/4/1308)

Applicant: Australian Institute of Health and Welfare

Approval valid until: 31 December 2024

The Defence and Veteran Suicide Royal Commission was established on 8 July 2021. Royal Commissioners were required to produce an interim report by 11 August 2022 and a final report by 15 June 2024. The Royal Commission will be conducted independently of Government and will inquire into:

• any previous death by suicide, including suspected suicide, among current and ex-serving ADF members
• systemic issues and common themes related to defence and veteran death by suicide
• the possible contribution of pre-service, service, transition, separation, and post-service issues
• other matters believed by the Royal Commission to be relevant to its inquiry.

The DVA–AIHW work program aims to build a comprehensive profile of the health and welfare of Australia’s veteran population. It includes research about families, welfare, education, employment, medication use, health service use, hospitalisation, and emergency department attendance.

This study aims to create a profile about veterans that will inform the Royal Commission and the DVA–AIHW work program on policy decisions aimed at improving the health and welfare of veterans.

There will be two study cohorts:

• Cohort 1 (n = 400,000) will consist of all permanent, reserve and ex-serving ADF members with at least 1 day of ADF service since 1 January 1985.
• Cohort 2 (n = 3,000) will consist of all permanent, reserve and ex-serving ADF members with at least 1 day of ADF service since 1 January 1985 and who have died by suicide.

The study will also include a comparator group comprising all recorded deaths by suicide for the entire Australian population since 1 January 1985 (approximately 80,000 cases).

Data will be linked to the following datasets:

• Medicare Consumer Directory
• Pharmaceutical Benefits Scheme
• Medicare Benefits Schedule
• National Death Index
• Several Defence Personnel, Service, Health and Suicide datasets
• Several DVA Client and Treatment datasets
• Joint Military Police Unit Suicide Register Database
• National Hospital Morbidity Database
• Non-Admitted Patient Emergency Department Care Database.

The Royal Commission and DVA–AIHW work program will deliver outcomes that will facilitate the development of targeted policies and interventions designed to improve the health and welfare of permanent, reserve, and ex-serving ADF members.

Health Watch Study (EO2021/5/1019)

Applicant: Monash University

Approval valid until: 1 January 2025

Workers within the petroleum industry are often exposed to hazardous chemicals such as benzene (a natural component of petroleum steam) and benzene-containing petroleum products. The International Agency for Research on Cancer has classified benzene as a carcinogen. Long-term benzene exposure has been linked to various cancers including acute myeloid leukemia, chronic lymphocytic leukaemia, multiple myeloma, and non-Hodgkin Lymphoma. In 1980, in response to incidences of cancer among petroleum industry workers, Health Watch, a prospective study, was developed to monitor the long-term health outcomes of petroleum industry workers.

The present study investigates mortality and cancer incidence among Australian petroleum industry workers.

The study cohort consists of approximately 21,000 participants from the original Health Watch study. Petroleum workers were eligible to participate in the Health Watch study if they had served a minimum of five years in the industry.

The study cohort will be linked to the following datasets:

• National Death Index
• Australian Cancer Database.

Study findings will establish whether exposure to hazardous chemicals in the petroleum industry is a risk factor for cancer morbidity and, in severe cases, mortality. Healthcare professionals can use the study findings to develop care and management plans for workers who may be at risk of adverse health outcomes.

Real-world Evidence for Comparative Effectiveness of Interventional Procedures (EO2021/5/1208)

Applicant: Centre for Big Data Research in Health, University of New South Wales

Approval valid until: 1 January 2027

This study aims to develop an analytics framework and methodology for measuring and reporting on the use and effectiveness of interventions used in routine care.

The study cohort will consist of 550,000 participants from across the Australian Capital Territory, New South Wales, and Victoria. The cohort will be drawn from the respective Admitted Patient, Emergency Department, Mental Health and Drug and Alcohol data collections for each state/territory.

The cohort will be linked to the following datasets:

• Pharmaceutical Benefits Scheme
• Medicare Benefits Schedule
• National Death Index.

Study findings will guide and inform care and treatment decisions, leading to better patient health outcomes.

Earning and Learning Project (EO2021/5/1275)

Applicant: South Australian Department for Education

Approval valid until: 7 December 2023

The South Australian Department for Education is undertaking several data linkage projects to understand the pathways that South Australian public-school students take after leaving school. Common pathways include enrolling in further education and training (for example, university or TAFE) or entering the workforce. Currently, little is known about the outcomes of students who do not follow either of these common pathways after leaving school.

This study seeks to understand the number and characteristics of students not on a viable earning or learning pathway (not working or studying/training) and the length of time they remain on this pathway.

The study cohort will consist of 6,519 participants, who have an active enrolment record at a South Australian public school. The cohort will be drawn from the South Australian Department for Education Enrolment Census.

The study cohort will be linked to the DOMINO dataset.

Study findings will provide insight into the characteristics of young people who do not go directly into the workforce or undertake further education after leaving school and the length of time they stay on this pathway.

Quality of Care in the Management of Cancer (EO2021/5/1285)

Applicant: Chris O’Brien Lifehouse

Approval valid until: 30 November 2023

Early cancer screening programs and improved treatment options have led to an increase in cancer survival rates and patient health outcomes. Despite these advances, inequalities in the accessibility of treatment services and cancer survival rates are still present among ethnic minority groups and individuals living in lower socioeconomic areas.

This study aims to address these discrepancies by:

• investigating variations in quality of care and adherence to clinical practical guidelines (CPGs) in the management of cancer by modality (surgery, radiotherapy, chemotherapy, palliative care) and cancer type
• identifying patient populations where there is a disparity in quality of care and/or CPG adherence in the management of cancer
• evaluating patient, tumour, and health services factors that predict quality of care and CPG adherence evaluating the correlation between receipt of quality of care and CPG adherence with clinical outcomes.

The study cohort comprises 160,000 participants, drawn from the NSW and ACT cancer registries, and includes all patients diagnosed with breast, prostate, lung, colorectal, cervix, uterine or head and neck cancer from 1 July 2005 to the most recently available.

The study cohort will be linked to the following datasets:

• Pharmaceutical Benefits Scheme
• Medicare Benefits Schedule
• National Death Index.

Healthcare professionals and health policymakers can use the study findings to reduce inequalities in the accessibility of cancer treatment services and survival rates among ethnic minority groups and individuals living in lower socioeconomic areas.

Association of Breast Arterial Calcification and Cardiovascular Risk (EO2021/5/1293)

Applicant: Monash Health

Approval valid until: 1 December 2022

Cardiovascular disease (CVD) is the leading cause of death among women in the Western world. Despite this, there is little understanding of the female-specific risk factors for CVD such as parity, hormonal contribution, and autoimmune disease. An even less well-known risk factor is Breast Arterial Calcification (BAC). BAC is often detected through breast mammography, but it is not routinely reported. Increasingly, BAC has been described in observational studies as a potential marker of prevalent and incident CVD.

This study has the following aims:

• to evaluate whether BAC presence or absence improves risk stratification for CVD compared with risk calculators
• to evaluate whether patients with BAC on preventative therapy demonstrate improved outcomes compared with BAC patients who are not receiving therapy.

The study cohort consists of 1 million women who have undergone breast screening between 2013 and 2016. The cohort will be drawn derived from Breast Screen Victoria.

Data will be linked to the following datasets:

• National Death Index
• Pharmaceutical Benefits Scheme.

Study findings will establish whether BAC is indeed a risk factor for CVD in women. Healthcare professionals can use the study findings to develop targeted care and management treatment plans for women at risk of CVD.

Firefighters’ Health and PFAS (EO2021/5/1301)

Applicant: Monash University

Approval valid until: 31 December 2023

Per- and poly-fluoroalkyl substances (PFAS) are environmentally persistent pollutants. Few studies have investigated the health impacts of PFAS exposure. The available studies have largely focused on small groups of PFAS manufacturing workers and the general population. A recent systematic review identified PFAS exposure as a potential risk factor for cancer incidence. In addition, it should be noted that PFAS is a constituent in the fire retardants used by firefighters.

This study will establish whether PFAS exposure is a risk factor for adverse health outcomes among firefighters and whether the following health conditions are linked to PFAS exposure:

• cancers–in particular, bladder, renal and testicular cancer
• death or increased morbidity from liver, kidney, and metabolic outcomes
• cardiovascular outcomes including coronary heart disease, high blood pressure and stroke
• neurophysiological outcomes
• autoimmune effects.

The study cohort will consist of 223,033 paid and volunteer firefighters from Queensland and New South Wales and volunteer firefighters from Western Australia and Victoria.

Data will be linked to the following datasets:

• National Death Index
• Australian Cancer Database
• Pharmaceutical Benefits Scheme.

Study findings will provide invaluable insight into the health impacts of PFAS on firefighters and on the community more broadly. This could lead to the development of policies regarding the use of PFAS, helping to protect the health of the community and the environment.

One-year clinical patient outcomes following acute stroke in Albury Wodonga: a 10-year retrospective cohort study (EO2021/5/1311)

Applicant: Albury Wodonga Health and La Trobe University

Approval valid until: 31 December 2024

Globally, stroke is the second leading cause of death following ischaemic heart disease and the third most common cause of disability. Annually, approximately 56,000 acute strokes are diagnosed in Australia with an estimated annual cost of stroke care passing 5 billion dollars. Although the incidence of stroke has been lowered in Australia, significant regional variations still exist. Regional Australia disproportionately bears greater burden of stroke, which is impacted by higher incidence rates in regional populations. Nine out of the 12 electorates with the highest incidence of stroke nationally are in rural/regional areas. Despite the higher prevalence of stroke in rural and regional areas, there is a paucity of studies focusing on stroke patients living in rural and regional communities. Furthermore, there are discrepancies in the availability and accessibility of healthcare services for stroke patients in rural areas compared with metropolitan areas.

This study aims to investigate clinical outcomes and quality of life one year after an acute stroke.

The study cohort will consist of all acute stroke patients (first ever and recurrent), aged 18 years and older, who were admitted to Albury Wodonga Health between 2010 and 2020.

Data will be linked to the following datasets:

• National Death Index
• Australasian Rehabilitation Outcomes Centre dataset.

Study findings will provide much-needed information about the incidence of stroke in rural and regional areas of Australia. Findings will also guide and inform healthcare policy designed to facilitate the care and management of stroke patients while also increasing the accessibility and availability of healthcare services in rural and regional locations.

Hairdressers for heart health: a low-cost opportunity to improve heart health (EO2021/5/1313)

Applicant: The George Institute for Global Health

Approval valid until: 31 December 2024

Cardiovascular disease (CVD) is a leading cause of death in Australian women. In the 2 years leading up to 2018, only 39 per cent of Australian women aged 45 years and older had a heart risk assessment. While rates of cardiovascular (CV) risk assessment are also suboptimal among men, women are 12 per cent less likely to undergo screening as recommended in general practice. Moreover, Australian women have a high burden of modifiable risk factors including 60 per cent overweight or obese, 20 per cent with uncontrolled hypertension, and 63 per cent with dyslipidaemia.

The National Heart Foundation of Australia advocated for the Medicare-rebated ‘Heart Health Check’ (HHC), which was approved and adopted on 1 April 2019. While all women and men aged 45 years and older are eligible for an annual check, uptake has been limited. This is particularly true for women, with just 17,926 NSW women accessing a Heart Health Check over the last 12 months – 1.1 per cent of the 1.6 million eligible women aged 45 years and older. There is a clear need for a novel approach to encourage more women to engage with CV health and CV health risk assessment in settings beyond traditional healthcare settings. One example of such a setting might be hairdressing salons, a setting frequented by many women.

The aim of this study is to obtain a wider understanding of the benefits of promoting CV risk assessment for women outside traditional healthcare settings.

The study cohort and a control group will consist of women aged 45 years and older who attend a participating hairdressing salon. Salons will be randomly allocated in a 1:1 ratio to the intervention or control arm.

The study cohort will be linked to the following datasets:

• Medicare Consumer Directory
• Pharmaceutical Benefits Scheme
• Medicare Benefits Schedule
• National Death Index.

Healthcare professionals can use the study findings to promote greater uptake of CV risk assessment among women outside traditional healthcare settings. Study findings will guide and inform healthcare policy for women.

45 and up Study (EO2021/5/1314)

Applicant: The Sax Institute

Approval valid until: 31 December 2027

The Sax Institute’s 45 and Up Study is the largest longitudinal cohort study in Australia.

The present study will enable researchers to update and maintain the existing data asset within the 45 and Up Study.

The study cohort was recruited between 2005 and 2009 and consists of individuals aged 45 years and over who were drawn from the Medicare Consumer Directory.

The study cohort will be linked to the National Death Index.

This linkage will enable the updating of the 45 and Up Study data asset. Healthcare professionals can use this updated data asset to develop healthcare initiatives designed to maximise the health and well-being of Australians.

Towards Zero Suicides Evaluation (EO2021/5/1318)

Applicant: Taylor Fry (contracted by NSW Ministry of Health)

Approval valid until: 31 December 2023

A growing body of international and Australian evidence indicates that a ‘systems approach’ to suicide prevention is likely to be more effective in reducing suicide rates compared with individual un-coordinated initiatives. A systems approach requires a co-ordinated program of interventions involving healthcare and community professionals and organisations, along with government and non-government agencies, working together at a population-level, at a community-level and at an individual-level.

In NSW alone, there are an estimated 16 lives lost each week to suicide. The factors leading to suicide are complex and may be influenced by a person’s experiences as well as social, cultural, and economic circumstances. Towards Zero Suicides is a large NSW Government investment of 87 million dollars over three years in fifteen suicide prevention initiatives to address priorities in the Strategic Framework for Suicide Prevention in NSW 2018–2023 and contribute to the Premier’s Priority target of reducing the suicide rate in NSW by 20 per cent by 2023.

The Towards Zero Suicides evaluation will provide robust evidence about the effectiveness and efficiency of the Towards Zero Suicide individual initiatives and their collective impact. Specifically, the evaluation seeks to answer two main questions:

1. Has the Towards Zero Suicides initiative achieved its objectives?
2. Which Towards Zero Suicides initiatives work well, for whom, and under which circumstances?

The study cohort will be drawn from various NSW hospital datasets and will include individuals who presented to emergency departments with self-harm and suicidal ideation, individuals admitted to hospital for mental health reasons, and those who attended a Safe Haven or who were attended to by a Suicide Prevention Outreach Team.

Data will be linked to the following datasets:

• Pharmaceutical Benefits Scheme
• Medicare Benefits Schedule
• NSW hospital datasets
• NSW ambulance datasets
• NSW Registry of Births, Deaths, and Marriages
• Youth Aftercare program data.

Study findings may lead to recommendations for policy content and implementation to improve outcomes for people at risk of self-harm and suicide.

Assessing the risk of tuberculosis among all migrants to Australia (EO2020/1/1055)

Applicant: University of Sydney and the Department of Home Affairs
Approval valid until: 1 June 2021

Historically and in recent years, an ever increasing number of individuals have immigrated to Australia. Some of these individuals have come from countries where there has been a high incidence of tuberculosis.

To mitigate the risk of tuberculosis importation into Australia, the Department of Home Affairs has used various diagnostic screening tools such as chest radiographs to identify immigrants with active symptoms. Despite the widespread use of chest radiographs, they are unable to detect latent symptoms.

This study examines the effectiveness of existing screening policies and practices in the detection of tuberculosis among individuals entering Australia.

Specific aims include:

• identification of demographic and clinical risk factors for active tuberculosis cases diagnosed within six months of visa issuance for permanent and temporary migrants
• development and validation of a screening algorithm for detecting cases, including latent cases that develop within six months after screening
• assess the frequency of, and risk factors for, the incidence of tuberculosis diagnosed in Australia, greater than six months beyond the date of visa issuance among migrants.

The study cohort will be drawn from the Department of Home Affairs’ Integrated Client Service Environment and Immigration Records Information System databases from 1 January 2014 onwards.

The study cohort will be linked to state and territory health datasets.

Study findings will contribute to improved tuberculosis screening among immigrants entering Australia.

Long-term outcomes in patients implanted with implantable cardioverter-defibrillator (EO2020/1/1102)

Applicant: The Canberra Hospital
Approval valid until: 15 February 2021

Despite the widespread use of implantable cardiovascular defibrillators—battery-operated devices implanted under the skin which send electrical impulses to the heart—to treat patients with severe cardiovascular disease, little is known about their effectiveness.

This study investigates survival outcomes among patients with implantable cardiovascular defibrillators.

The study cohort will consist of cardiomyopathy patients who received an implantable cardiovascular defibrillator in the Australian Capital Territory between 1 January 2005 and 31 March 2019.

Data will be linked to the National Death Index.

Clinicians can use study findings to maximise survival outcomes among patients with implantable cardiovascular defibrillators.

Improving Australian diabetes and chronic kidney disease monitoring (EO2020/1/1131)

Applicant: Australian Institute of Health and Welfare
Approval valid until: 24 December 2021

This study examines patterns of healthcare use and survival outcomes among patients in Australia with either diabetes or kidney disease.

The study cohort will be drawn from the National Diabetes Services Scheme and the Australia and New Zealand Dialysis and Transplant Register.

Data will be linked to the National Death Index, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme.

Study findings can be used to monitor the burden of disease associated with diabetes and kidney disease, enabling healthcare professionals to enhance the care of patients with either diabetes or kidney disease.

National Disability Data Asset Justice Test Case, NSW—Interaction of people with disability and the justice system: a NSW linkage study (EO2020/1/1140)

Applicant: NSW Bureau of Crime Statistics and Research
Approval valid until: 30 March 2023

This study investigates the unique needs posed by individuals with a disability within the criminal justice system.

The study cohort will consist of individuals aged 10 years and over at or after 1 July 2009 in NSW who also meet the following criteria:

• have used disability support services between 1 January 2009 and 31 December 2018
• are a current or former participant in the National Disability Insurance Scheme
• have ever been in receipt of the Disability Support Pension
• have had one or more interactions with the NSW criminal justice system.

This study will also include two comparator groups:

• individuals assessed as having a disability who have not had contact with the criminal justice system
• individuals assessed as not having a disability who have had contact with the criminal justice system.

Study cohort data will be drawn from the following datasets:

• Disability Services National Minimum Dataset
• National Disability Insurance Scheme
• DOMINO (Department of Social Services Data Over Multiple Individual Occurrences dataset)
• NSW Re-offending Database
• NSW Police Victims’ Database.

The study cohort and the comparator groups will be linked to the following datasets:

• National Death Index
• Medicare Enrolment File
• Medicare Benefits Schedule
• Pharmaceutical Benefits Scheme
• DOMINO
• Specialist Homelessness Services Collection
• Disability Services National Minimum Dataset.

Study findings will contribute much-needed information about the unique needs posed by individuals with a disability within the criminal justice system. Policymakers can use this information to develop policies and targeted interventions.

Broader pathways to homelessness (EO2020/2/1034)

Applicant: NSW Department of Communities and Justice

This study extends the existing evidence base about early interventions for homeless young people in NSW. It builds on the work undertaken in a previous project: Pathways to Homelessness (EO2018/3/476).

A study cohort (approximately 205,000 individuals) and a comparison group (approximately 420,000 individuals), drawn from the Pathways to Homelessness project, will be linked to the Medicare Consumer Benefits Directory, the Medicare Benefits Schedule, the Pharmaceutical Benefits Scheme, and welfare payments data from DOMINO (Centrelink data).

Findings will inform policies and initiatives designed to reduce homelessness among young people in NSW.  

Using machine learning to understand and improve care and outcomes for head and neck cancer patients (EO2020/2/1129)

Applicant: Prince of Wales Hospital
Approval valid until: 31 December 2023

In this project, study investigators will use statistical modelling to predict health outcomes among head and neck cancer patients. The modelling will include patient demographics, co-morbidities, tumour characteristics and treatment information. 

The study cohort consists of approximately 15,000 adult patients who presented to and/or received treatment at several participating NSW Cancer Centres between 1 January 2000 and 31 December 2017.

Data will be linked to the National Death Index.

Findings from this study will inform healthcare policies and practices designed to improve the care of head and neck cancer patients.

UNSW Early Life Course Project: Real-world evidence to improve health and social wellbeing of mothers and children (EO2020/2/1130)

Applicant: University of New South Wales

This study investigates developmental trajectories of women and their children in NSW within the following three domains:

• medicine use in pregnant women and their children
• pregnancy and perinatal health
• child health, development and well-being.

The study cohort, prepared by the NSW Centre for Health Record Linkage, will consist of all babies born in NSW from 1 July 2001 and their parents.

Child and parent cohorts will be linked to the following datasets:

• National Death Index
• Medicare Consumer Benefits Directory
• Medicare Benefits Schedule
• Pharmaceutical Benefits Scheme.

The child cohort will also be linked to the Australian Immunisation Register. The parent cohort will be linked to Centrelink Income Assistance data (DOMINO).

This study will identify social, economic and environmental barriers to healthy developmental trajectories. Findings will inform healthcare policy and contribute to improvements in the health and well-being of mothers and their children.

Does continuity of primary care reduce demand on emergency department presentations and hospital admissions? (EO2020/2/1138)

Applicant: Curtin University
Approval valid until: 31 December 2022

This study, a refreshed application of a previous project (EO2015/4/192), investigates the effectiveness of primary care services on health outcomes among patients with a range of chronic medical conditions.

Specific study objectives include:

• evaluate the effects of continuity of primary care contact on emergency department visits and potentially preventable hospitalisations
• evaluate the impact of continuity of primary care contact on costs relating to emergency department visits and potentially preventable hospitalisations
• determine sociodemographic and clinical predictors of primary care contact patterns for patients with chronic medical conditions.

A study cohort, drawn from the Medicare Consumer Directory (also known as the Medicare Enrolment File), will be linked to the following datasets:

• National Death Index
• Medicare Benefits Schedule
• Pharmaceutical Benefits Scheme.

Healthcare professionals can use study findings to improve quality of life among patients with chronic medical conditions.

Cancer and Treatment Linked Analysis Asset—Phase 1 (CaT-Link1) (EO2020/2/1139)

Applicant: Australian Institute of Health and Welfare
Approval valid until: Ongoing

This study aims to establish an enduring linked cancer and treatment analysis asset (Cat-Link AA) to inform cancer-based epidemiological research.

The study cohort will consist of individuals diagnosed with cancer from 1 January 1982 onwards (data will be drawn from the Australian Cancer Database). The study cohort will be linked to the following datasets:

• National Death Index
• Medicare Benefits Schedule
• Pharmaceutical Benefits Scheme.

Cat-Link will be used to investigate numerous research questions and hypotheses over time in relation to the health services used by, and medications prescribed to, people diagnosed with cancer, and their outcomes. Some examples of the types of research questions that will be addressed include:

• Investigating cancer care pathways, assessing outcomes of different care pathways, population differences in both pathways and outcomes, costs of different cancer care pathways, and numerous other useful variants, including tracking of change over time in treatment patterns.
• Analysis of specialist treatment location relative to patient location.
• Assessment of differences in patterns of interaction with the health system on the timing of cancer diagnosis and subsequent outcomes.

Further phases of this project are planned to include the addition of other relevant datasets and the development of arrangements to enable access by a wider range of analysts.

ST-segment Elevation Myocardial Infarction (STEMI) (EO2020/2/1147)

Applicant: Prince Charles Hospital
Approval valid until: 30 June 2022

The purpose of this study is to examine the treatment of, management of and outcomes for patients with ST-segment Elevation Myocardial Infarction (STEMI).

A study cohort will be drawn from a Qld hospital cardiac database. This cohort will be linked to the National Death Index to identify deceased patients and their cause(s) of death.

Healthcare professionals can use study findings to develop best-practice care models for patients with cardiovascular disease.

Outcomes of Minimally Invasive Coronary Artery Bypass Grafting (MIDCAB)—a 20-year experience (EO2020/2/1151)

Applicant: Prince of Wales Hospital
Approval valid until: 7 June 2021

Historically, surgeons have treated coronary artery disease using bypass grafting, a less invasive technique than conventional surgery. Despite the widespread use of this medical procedure, limited data exists about its long-term outcomes.

This project will examine the long-term effectiveness of bypass grafting in the treatment of coronary artery disease and identify the characteristics of the target group for whom this procedure can be performed.

The study cohort consists of approximately 300 patients who underwent minimally invasive coronary artery bypass grafting between 1997 and 2019. This cohort will be linked to the National Death Index.

Study findings will provide much-needed information about the long-term effectiveness of coronary artery bypass grafting.

Health and welfare characteristics of current, ex-serving and reservist members of the ADF (EO2020/2/1154)

Applicant: The Australian Institute of Health and Welfare
Approval valid until: 31 December 2021

This project involves the acquisition, integration, transfer and analysis of data to support the Independent Review of Historical Suicides for the National Commissioner for Defence and Veteran Suicide Prevention. The Review conducted by the AIHW and Australian Commission on Safety and Quality in Health Care will consider risk and protective factors for suicide, including military service and veterans’ post service experience.

The study will compare the health and welfare characteristics of current, ex-serving and Reserve members of the Australian Defence Force (ADF) who died by suicide between 2001 and 2018 with (a) current, ex-serving and Reserve members who did not die by suicide, and (b) people in the whole Australian population who died by suicide.

Two separate linked datasets will be created: Dataset 1 and Dataset 2.

Dataset 1

The study cohort of ex-serving members, and current and reservist ADF members not known by Defence to be alive will be linked to the following datasets:

• National Death Index (NDI)
• Medicare Consumer Directory (also known as the Medicare Enrolment File)
• Medicare Benefits Schedule (MBS)
• Pharmaceutical Benefits Scheme (PBS) and Repatriation Pharmaceutical Benefits Scheme (RPBS)
• Defence Personnel Management Key Solution (PMKeyS)
• Defence health and transition data (multiple datasets)
• Defence Suicide Database (DSD)
• Department of Veterans’ Affairs (DVA) client and National Treatment Account data
• Multi-Agency Data Integration Project (MADIP) data asset
• ABS Psychosocial coding data.

Dataset 2

The linked Veterans-hospital-MBS-PBS dataset will include:

• select Veteran data from PMKeyS, DVA client data and the Medicare Consumer Directory
• NDI
• select data from Admitted Patient Care data and Non-admitted Patient Emergency Department Care data (hospitals), MBS and PBS data.

The analysis will investigate whether there are any protective and/or risk factors that are unique to the Veteran population, which could identify opportunities to focus prevention strategies and ensure a proactive, safety-focused culture.

The Review outcomes will enable targeted policies and interventions to be developed to improve the health and welfare of, and contribute to suicide prevention among, current serving, Reserve and ex-serving ADF personnel.

The Australian Corneal Graft Registry (EO2020/2/1155)

Applicant: The Australian Corneal Graft Registry

Established in 1985, the Australian Corneal Graft Registry (ACGR) is a prospective national database of corneal transplants performed across Australia. The registry contains over 38,000 records of corneal transplants.

ACGR data guides and informs clinical practice. For example, data are used to measure clinical outcomes (e.g. corneal graft survival and visual outcomes) and to examine risk factors for corneal graft failure. It is therefore important that the ACGR contains the most up-to-date information.

It is imperative that ACGR data are updated regularly and that deceased patients are excluded from follow-up. The ACGR will be linked to the National Death Index. This project is a refreshed application of a previous project (EO2013/3/52).

ACGR data custodians will use the results to update the ACGR. Data will inform the management of corneal transplant patients.

Bipolar at-risk prospective study: A long-term follow-up (EO2020/2/1161)

Applicant: Orygen—The National Centre for Excellence in Youth Mental Health
Approval valid until: 10 June 2021

The Bipolar At-Risk Prospective Study (BARPS), a longitudinal study, investigated risk factors for the onset and maintenance of bipolar disorder. Study investigators followed-up a cohort recruited between 2008 and 2011. Findings contributed to the development of assessment criteria to improve the identification of individuals at risk of bipolar disorder.

This follow-up study will evaluate the validity of these assessment criteria and examine the longer-term outcomes for the group.

The original BARPS cohort will be linked to the National Death Index to identify deceased patients so that they can be excluded from follow-up assessment.

Study findings will aid healthcare professionals in the detection of bipolar disorder and in the management of individuals afflicted by this debilitating mental illness.

Review of the Restraint Principles (EO2020/2/1162)

Applicant: Department of Health
Approval valid until: 31 July 2020

The Royal Commission into Aged Care Quality and Safety raised concerns about the use certain psychotropic medications prescribed for sedation of residents in Commonwealth subsidised residential aged care services. Since July 2019, approved residential aged care service providers have had legislative responsibilities relating to the use of physical and chemical restraint under Part 4A of the Quality of Care Principles 2014 (the Principles).

On 22 November 2019, further amendments to the Principles included a requirement to undertake a Review of the regulatory arrangements. This Department of Health funded project will address Review requirements for evaluating the effectiveness of the Principles in minimising the use of chemical restraint, with physical restraint changes considered separately.

The study cohort, drawn from the National Aged Care Data Clearing House, will consist of all permanent residents who received Commonwealth aged care subsidies between June 2017 and March 2020, and who were dispensed key medications (e.g. antipsychotics and benzodiazepines), before and after the amendments to the Quality of Care Principles.

The cohort will be linked to the National Death Index and the Pharmaceutical Benefits Scheme.

As part of the legislated review, this project will provide evidence to inform possible refinements of the regulatory arrangements relating to the use of chemical restraint within Commonwealth subsidised residential aged care services.

Australian Longitudinal Study on Women’s Health (ALSWH) data linkage project (EO2020/3/1115)

Applicant: University of Queensland
Approval valid until: 31 December 2030

The Australian Longitudinal Study on Women’s Health (ALSWH) is a longitudinal survey-based study investigating the health and well-being of over 50,000 Australian women. The study began in 1996 and is the largest study of its kind ever conducted in Australia. The ALSWH examines Australian women’s physical and emotional health, use of health services, health behaviours and risk factors, sociodemographic factors, and life stages and key events.

The study aims to provide new information about the health status, health outcomes and healthcare use of Australian women to better inform current healthcare policy and practice.

The study consists of four cohorts of women (born within 1921–1926, 1946–1951, 1973–1978 and 1989–1995). The 1989–1995 cohort was recruited online using multimedia strategies. The other three cohorts were previously recruited by Services Australia (formerly the Department of Human Services) from the Medicare Consumer Benefits Directory (formerly the Medicare Enrolment File).

The ALSWH survey data will be linked to the following datasets:

• Medicare Benefits Schedule
• Pharmaceutical Benefits Scheme
• National Death Index
• Australian Cancer Database
• National Aged Care Data Clearinghouse
• Department of Veteran Affairs
  • Community Nursing Services
  • Repatriation Medicare Benefits Schedule
  • Home Care data.

Study findings will contribute new information about the health status, health outcomes, and healthcare use of Australian women. Policymakers can use this information to better inform women’s health policy, subsequently improving the health outcomes of Australian women and the health services they are provided.

Analysis of preventable residential fire fatalities: data matching (EO2020/3/1145)

Applicant: Risk Frontiers
Approval valid until: 4 August 2023

Studies by metropolitan fire brigades have found that older people, people with disability, and people living alone are at a significantly higher risk of accidental fire fatality compared with the general population. Many victims have also been part of funded community care programs.

This study aims to identify the number of individuals who died from a preventable fire while accessing selected in-home aged care services at the time of death.

The study cohort will consist of people who died between 1 July 2005 and 30 June 2017 from a preventable residential fire.

Data will be linked to the National Aged Care Data Clearinghouse.

Study findings will assist in the effective implementation of community safety programs aimed at reducing fire fatalities and injuries. Policymakers can use this information to ensure that messaging and interventions are targeted and delivered to the most at-risk groups, thereby reducing the number of fatalities occurring from preventable residential fires.

Cancer and mortality among Queensland coal mine workers (EO2020/3/1148)

Applicant: Monash University
Approval valid until: 11 December 2022

Coal mine workers are exposed to ultrafine particulates that arise from coal dust, diesel engine exhaust, and silica. The International Agency for Research on Cancer has found that diesel engine exhaust and silica are Group 1 Human Carcinogens, affecting the lungs. The interactions between coal dust, quartz, and silicates are thought to lead to various pathological changes in the lungs, resulting in diseases such as coal workers’ pneumoconiosis (an untreatable but preventable disease), progressive massive fibrosis, silicosis, and mixed dust pneumoconiosis. Ultrafine particulates have also been linked to higher rates of heart disease-related mortality.

This study aims to identify whether current and former coal mine workers in Queensland have higher rates of cancer and mortality compared with the general population. This study also investigates whether cancer risk factors have changed over time (with increases in new technology), whether specific types of mines are more closely related to an increased risk of cancer and/or mortality, and whether any excess risks are associated with specific coal mine exposures (such as coal dust, silica, or diesel engine exhaust).

The study cohort will consist of around 180,000 current and retired coal mine workers, from Queensland, who worked from 1982 onwards. The study cohort will be drawn from the Queensland Department of Natural Resources, Mines and Energy (DNRME) database.

Data will be linked to the National Death Index and the Australian Cancer Database.

Study findings will inform updates to the DNRME so that preventative measures can be implemented to reduce the chronic burden of disease among coal mine workers in Queensland.

Future Directions Evaluation (EO2020/3/1171)

Applicant: NSW Department of Communities and Justice
Approval valid until: 31 December 2022

A growing demand for social housing, as well as a decrease in the number of clients leaving the system, has led to a housing supply shortage in NSW. The shortage has contributed to an increase in homelessness, intergenerational disadvantage, lower rates of employment, lower levels of education, and poorer health outcomes among those requiring housing assistance. To address the housing supply shortage, in 2016, the NSW Government launched the ‘Future Directions’ reform. This reform aims to reduce homelessness, create more housing, and assist people to divert from or to successfully transition out of the social housing system.

This study aims to evaluate the Future Directions reform in terms of whether the policy is achieving its objectives and to identify areas of potential improvement. In particular, this study will examine how Future Directions has affected individuals and communities across seven domains: economic/employment, education and skills, safety, home, physical and mental health, social and community, and empowerment.

The study cohort (N = 2,100,000) will be drawn from the NSW Department of Communities and Justice Housing databases and will consist of individuals in NSW from 2010 onwards who:

• have applied for or are/have been in receipt of Future Directions programs and initiatives or
• have applied for housing assistance or have been residing in social housing since 2010 or
• are/have been in receipt of assistance for rent in the private market.

The study cohort will be linked to the following datasets:

• Pharmaceutical Benefits Scheme
• Medicare Benefits Schedule
• Data Over Multiple Individual Occurrences (DOMINO; Centrelink Services)
• National VET Provider Collection
• Several Department of Communities and Justice Program datasets
• Crime, corrections, and re-offending data
• Several NSW health, education, and death administrative datasets.

Study findings will lead to recommendations targeted at improving the outcomes for recipients of Future Directions programs and initiatives. Policymakers can use this information to better inform efficient government spending and improved societal outcomes.

Preventing adverse events in opioid substitution therapy (EO2020/3/1173)

Applicant: National Drug and Alcohol Research Centre, University of New South Wales
Approval valid until: 27 April 2023

Opioid substitution therapy (OST), using methadone and buprenorphine, is an effective treatment for opioid use disorder. However, there are important questions regarding the risk of death and non-fatal adverse clinical outcomes associated with OST that remain unanswered. The NSW Centre for Health Record Linkage has already undertaken several linkages to population-based health and criminal justice datasets. These linkages have investigated risk factors for adverse clinical outcomes during OST.

The linkage work undertaken by the NSW Centre for Health Record Linkage has been restricted to NSW mortality data. This study aims to build upon this work by identifying patient deaths occurring outside NSW.

The study cohort will consist of people who received OST in NSW between 1 August 2001 and 19 September 2018.

Data will be linked to the National Death Index.

Study findings will facilitate the development of strategies and clinical protocols to maximise patient safety and quality of care in OST.

Social welfare dependency and receipt of welfare benefits following child abuse and neglect: a South Australian linked data study (EO2020/3/1174)

Applicant: University of South Australia
Approval valid until: 30 June 2023

Child maltreatment and other adverse childhood experiences are associated with a wide range of poor outcomes across health and socioeconomic domains. Limited research has been done on the consequences of child maltreatment in Australia as well as the subsequent benefits that may be achieved through effective prevention strategies. This study is part of a larger project (iCAN) which uses South Australian child protection, health, education, and registries of births and deaths data to examine mortality, morbidity, and social outcomes for people involved in the child protection system compared with those who were not.

This study aims to examine the consequences of child abuse and neglect in South Australia. In particular, this study will focus on welfare dependency outcomes including the extent and duration of receipt of benefits, specifically for disability, parental support, unemployment, and education supports.

The study cohort will consist of anyone who was born in South Australia between 1 January 1986 and 30 June 2017 (drawn from the South Australian Birth Registry or the South Australian Perinatal Statistics Collection) or who was in the South Australian Child Protection dataset from 1986 until 30 June 2017 (including people born outside South Australia).

Data will be linked to the National Death Index and Data Over Multiple Individual Occurrences (DOMINO; Centrelink Services).

Study findings will act as an evidence-base for investment in programs that support families and provide nurturing childhood environments.

Cancer and reproductive outcomes for women: a population-based cohort study (EO2020/3/1178)

Applicant: University of Newcastle
Approval valid until: 31 December 2023

There is limited research on the implications of a cancer diagnosis on women and their babies.

This study aims to investigate the pregnancy, maternal, perinatal, and infant outcomes of women with cancer as well as the long-term outcomes of women with cancer who have given birth.

The study consists of two cohorts:

• women (and their babies) who gave birth in NSW between 1 January 1994 and 31 December 2013; have a record in the NSW Central Cancer Registry; and were diagnosed with cancer before falling pregnant, during pregnancy, or within 1 year postpartum
• women aged 12–49 years (at the time of diagnosis) diagnosed with cancer in NSW between 1 January 1994 and 31 December 2013; have a record in the NSW Perinatal Data Collection; and were diagnosed with cancer before falling pregnant, during pregnancy, or within 1 year postpartum.

The study will also include a comparator group of women who have given birth but do not have a history of cancer (and their babies) as well as women with a cancer diagnosis who have not given birth. 

Data will be linked to the following datasets:

• Pharmaceutical Benefits Scheme
• Medicare Benefits Schedule
• National Death Index
• NSW cancer, death, perinatal, and health collections.

Findings will assist cancer and fertility disciplines in best practices for pregnancy care and follow-up for women with cancer and their babies.

An epidemiological study of transmission of COVID-19 on commercial aircraft (EO2020/3/1184)

Applicant: COVID-Net, Australian Government Department of Health
Approval valid until: 15 July 2022

Air travel played a major role in the rapid global spread of COVID-19. Australian health authorities conducted contact tracing for all flights where there were confirmed cases during the infectious period. Despite this, the rate of potential transmission to close and casual inflight contacts, as well as the exact number of flights with infectious cases, remains unknown.

This study aims to estimate the risk of COVID-19 transmission during commercial flights within or into Australia.

The study cohort will consist of all QANTAS Airways and Virgin Australia flights (including passengers and flight crew), between 23 January 2020 and 22 January 2021, where a known infectious case of COVID-19 was onboard the flight.

Data will be linked to the National Notifiable Disease Surveillance System.

Study findings will act as an evidence-base for inflight physical distancing measures and contact tracing approaches. This will ensure that as the demand for air travel increases, all passengers, crew, and the wider community are protected from subsequent COVID-19 variants.

Identification of people with disability in linked administrative data for service use and outcomes reporting (EO2020/3/1185)

Applicant: Commonwealth Department of Social Services
Approval valid until: 30 March 2023

The National Disability Data Asset (NDDA) is a joint, integrated data project aiming to bring together Commonwealth and state data to provide new insights for the future development of policy for people with disability. This project is the second of 5 test cases that will be used as pilot studies to test the viability of NDDA to inform disability policy while identifying gaps and data remediation requirements.

This study aims to test whether the NDDA can be used to identify people with disability. It will also assess whether the NDDA is a suitable data source for reporting against the National Disability Strategy Outcomes Framework, with a focus on the housing supports system. 

The study cohort will consist of people in NSW, Vic, SA, and Qld who are identified as having disability (based on available data between 1 January 2010 and 30 June 2020). Disability status will be derived using the following datasets:

• National Disability Insurance Scheme
• Disability Service National Minimum Dataset
• Data Over Multiple Individual Occurrences (DOMINO; Centrelink Services)
• Medicare Benefits Schedule
• Public Housing and State Owned and Managed Indigenous Housing
• Specialist Homelessness Services Collection.

The study will also include a comparator group of people who were identified as having been a recipient of housing-related supports and who were not identified in the study cohort.

The study cohort and comparator group will be linked to the following datasets:

• National Death Index
• National Disability Insurance Scheme
• Pharmaceutical Benefits Scheme
• Disability Services National Minimum Dataset
• Data Over Multiple Individual Occurrences (DOMINO; Centrelink Services)
• Medicare Benefits Schedule
• Public Housing and State Owned and Managed Indigenous Housing
• Specialist Homelessness Services Collection.

Study findings will be used to develop a deeper understanding of the extent to which people with disability interact with the housing supports system. Policymakers can use this information to inform policy and programs aimed at improving services for people with disability.

Early childhood supports in NSW – National Disability Data Asset (EO2020/3/1186)

Applicant: NSW Department of Education
Approval valid until: 30 March 2023

The National Disability Data Asset (NDDA) is a joint, integrated data project that aims to bring together Commonwealth and state data to provide new insights for the future development of policy for people with disability. This project is the third of 5 test cases that will be used as pilot studies to test the viability of NDDA to inform disability policy while identifying gaps and data remediation requirements.

This study aims to provide baseline data for Government policy development regarding what services and supports (education, health and others) children with developmental delay and disability have used by the time they enter school in NSW. It also aims to better understand the relationship between the use of early childhood supports and the impact on child development and educational outcomes.

The study cohort will consist of children with developmental delay or disability, born between 1 January 2003 and 31 December 2019, who were either born in NSW or who used specified NSW early education or health-related services.

The study cohort will be linked to the following datasets:

• Medicare Consumer Directory
• National Disability Insurance Scheme
• Data Over Multiple Individual Occurrences (DOMINO; Centrelink Services)
• Medicare Benefits Schedule 
• Child Care Subsidy/Child Care Benefit
• Australian Early Development Census
• Disability Services National Minimum Data Set/Commonwealth State Territory Disability Agreement National Minimum Data Set
• National Death Index
• several NSW datasets.

Study findings will be used to inform policy, service program planning, and reporting for children with developmental delay and disability. Insights will inform effective models of integrated support for children with developmental delay and disability while supporting better health outcomes for these children.

NSW Child Development Study: program linkage (EO2020/4/1026)

Applicant: University of New South Wales
Approval valid until: 4 August 2023 

The NSW Child Development Study follows an established cohort of NSW children and their parents, longitudinally, via successive record linkages. The study aims to identify risk and protective factors across a multitude of domains in adolescence and adulthood.

This study aims to identify targets for early intervention by relevant government agencies. Examples of targeted areas include mental health and wellbeing, child protection, educational attainment, and criminal justice.

The study cohort will consist of children (and their parents) who were assessed in the 2009 NSW Australian Early Development Census or the 2015 NSW Middle Childhood Survey. The NSW Centre for Health Record Linkage will create the child (N = 91,365) and parent populations (N = 152,000) from a variety of NSW education, birth registration, and perinatal records.

Data will be linked to the following datasets:

• Medicare Consumer Directory
• Medicare Benefits Schedule
• Pharmaceutical Benefits Scheme
• Data Over Multiple Individual Occurrences (DOMINO; Centrelink Services).

Study findings will be used to assist NSW Government agencies in implementing policies targeted at improving mental health and related health and social outcomes for Australian children

MAINSTREAM Project: characteristics and health outcomes for people accessing healthcare for eating disorders (EO2020/4/1136)

Applicant: University of Sydney
Approval valid until: 25 June 2025

Eating disorders (EDs) affect over 1 million Australians and result in a high mortality rate, increased risk of suicidality, high levels of chronic illness, extreme carer burden, and substantial socioeconomic costs to the sufferer and the community. However, if treated early and with the right interventions, an ED can be completely cured.

This study aims to evaluate the detection and treatment of EDs across the health system. This study will also aim to develop health system and economic models that evaluate current and future interventions in relation to outcomes, cost-effectiveness, and equity of access.

The study cohort will consist of all people identified as having an ED and who reside in either New South Wales, the Australian Capital Territory, Victoria, or Queensland. The study cohort will be drawn from the Medicare Benefits Schedule, National Death Index, several state and territory hospital datasets, Headspace data, and Brain Mind Centre datasets.

The study cohort will be linked to the following datasets:

• Medicare Consumer Directory
• Medicare Benefits Schedule
• Pharmaceutical Benefits Scheme
• National Death Index
• National Coronial Information System
• several state and territory health, hospital, and death datasets.

Study findings will be used to identify strategies for the early detection and treatment of EDs, resulting in improved health outcomes, decreased carer burden, and reduced financial costs to families and the community.

Delivering value in maternity care: estimating cost-effectiveness, affordability and equity in maternal and early childhood health (EO2020/4/1167)

Applicant: Monash University
Approval valid until: 30 June 2023

There is a lack of evidence related to the cost-effective delivery of maternal healthcare in Australia.

This study aims to investigate which maternal and child health interventions/policies would be the most cost-effective, affordable, and equitable if implemented in Australia. 

The study cohort will consist of all mothers (N = 940,000) who gave birth in either New South Wales, Victoria or Queensland between January 2016 and December 2023, and their children (N = 960,000).

Data will be linked to the Medicare Benefits Schedule and Pharmaceutical Benefits Scheme.

Study findings will be used to provide real-world evidence about the impacts of new maternal and child health interventions/policies. Policymakers and health care providers can use this information to better inform maternal and child health policy, subsequently improving the health outcomes and care provided to mothers and their children.

Evaluation of a model to predict outcomes following endovascular aortic aneurysm repair (EO2020/4/1177)

Applicant: University of Adelaide
Approval valid until: 30 June 2023

Abdominal aortic aneurysm (AAA) is a common and potentially fatal condition affecting approximately 5 per cent of men and 1 per cent of women. However, with early detection and treatment, most AAA-related death is preventable. Aneurysms larger than 5.5cm in diameter in men and 5cm in diameter in women are at significant risk of rupture and should be repaired unless major contraindications exist. Endovascular aneurysm repair (EVAR) surgery has been widely practiced in Australia and is considered the treatment of choice for AAA. However, the durability of EVAR is problematic, with a small percentage of patients still suffering AAA rupture despite EVAR repair.

This study aims to evaluate and improve an interactive model of EVAR which will allow clinicians to pre-operatively predict the likelihood of peri-operative and aneurysm-related mortality and long-term survival outcomes.

The study cohort will consist of 695 prospectively recruited patients who consented to be part of the Endovascular Aneurysm Repair Risk Assessment (ERA) Model trial. Patients were included in the trial if they were at least 50 years of age and were undergoing elective infrarenal EVAR.

Data will be linked to the National Death Index.

Study findings will be used to inform clinical decision-making prior to surgery. Clinicians can use this information to identify patients who are at a high risk of procedural failure or severe adverse outcomes following EVAR.

The South Australian Longitudinal Bushfire Study – the cumulative impacts of childhood and adult exposure to major Australian bushfires (EO2020/4/1181)

Applicant: University of Adelaide and the Australian Centre of Excellence for Post-Traumatic Stress (ACEPTS)
Approval valid until: 31 December 2023

The South Australian Longitudinal Bushfire Study has been following children who were exposed to the 1983 Ash Wednesday bushfires to investigate the nature and severity of any trauma-related psychopathology. The recent 2019_­­­­­­–2020 bushfires offer an opportunity to understand the impact of recent bushfires for those with previous bushfire exposure.

This study aims to examine the effect exposure to the bushfires in childhood might have had on mental health outcomes in adulthood in the context of various risk and protective factors.

The study cohort will consist of 1,011 adults with childhood exposure to the 1983 Ash Wednesday bushfires. 

Data will be linked to the National Death Index.

Study findings will provide insight into the modifiable factors that can predict poor mental health outcomes following both childhood and adult exposure to bushfires and other natural disasters.

Understanding care pathway at end of life for cancer patients attending VCCC hospitals (EO2020/4/1183)

Applicant: St Vincent’s Hospital Melbourne
Approval valid until: 31 December 2023

Research demonstrates that the last 3 months of a person’s life are the most resource intensive in terms of health system usage.

This study aims to evaluate the use of cancer end-of-life treatments among primary care patients.

The study cohort will consist of hospital and primary care patients who were diagnosed with cancer and who subsequently died between 2007 and 2017. The hospital cohort will be drawn from the Royal Melbourne Hospital and Western Health datasets. The primary care cohort will be drawn from NPS MedicineInsight data.

Data will be linked to the National Death Index.

Study findings will be used to better inform policy and operational improvements for end-of-life care among cancer patients.

BreastScreen data linkage project phase II (EO2020/4/1187)

Applicant: Australian Institute of Health and Welfare
Approval valid until: 28 September 2025

In 2019, the AIHW completed a major data linkage project that combined data from Australia’s 3 cancer screening programs (breast, cervical and bowel cancer) with the Australian Cancer Database, National Death Index, and National HPV vaccination register (EO2014/4/130). Study findings offered important evidence to support the effectiveness of cancer screening in the early detection of cervical cancer and in the effectiveness of the HPV vaccine.

To answer additional research questions, the project will be expanded to include a second phase.

This second phase aims to facilitate the analysis of:

• breast screening behaviour and cancer outcomes among Indigenous Australian women
• cancer stage distribution and survival by breast cancer stage
• outcomes for women with ductal carcinoma in situ (DCIS)
• out-of-program screening
• pharmaceutical use.

The study cohort (N = 10 million) will consist of:

• all women who had a screening test between 1 January 1996 and the latest date available
• all women diagnosed with breast cancer between 1 January 1982 and the latest date available
• all women diagnosed with DCIS between 1 January 1982 and the latest date available
• all women with Medicare Benefits Schedule item numbers associated with breast cancer screening, detection, diagnosis, treatment, and follow-up between 1 February 1984 and the latest date available.

Data will be linked to the Medicare Benefits Schedule, Pharmaceutical Benefits Scheme, National Death Index, Australian Cancer Database, and BreastScreen data.

Study findings will be used to further address priority data gaps and enhance our understanding of breast screening and breast cancer among Indigenous Australian women. Policymakers and clinicians can use this information to continuously improve the BreastScreen program as well as screening behaviour and cancer outcomes for all women diagnosed with breast cancer.

Clinical Outcomes Measurement in Perioperative Medicine, Anaesthesia and Surgery Study (COMPASS) (EO2020/4/1194)

Applicant: Monash University
Approval valid until: 30 June 2023

Among healthy patients, the risk of mortality following non-cardiac surgery is generally quite low. However, postoperative mortality risk may be notably higher in some patient groups. Furthermore, when coupled with these at-risk patient groups, some non-cardiac surgical procedures would also pose a significant risk of postoperative mortality. Currently, there are no locally validated risk calculators for adults undergoing non-cardiac surgery in Australia.

This study aims to develop a perioperative mortality risk prediction model for adults undergoing non-cardiac surgery in Australia, based on the Surgical Outcome Risk Tool (SORT).

The study cohort will consist of adults who underwent a non-cardiac surgical procedure between 1 July 2010 and 30 July 2019, where admission was at least one night. The study cohort will be drawn from the admitted patient National Hospital Morbidity Dataset.

Data will be linked to the National Death Index and National Hospital Morbidity Dataset.

Clinicians can use perioperative mortality risk prediction models to identify high-risk patients who may benefit from enhanced pre-operative optimisation and enhanced post-operative care.

Sepsis associated with new onset of atrial fibrillation/atrial flutter: risk factors and outcomes (EO2020/4/1195)

Applicant: Canberra Hospital
Approval valid until: 31 December 2023

Atrial fibrillation (AF) is associated with ischaemic stroke in certain patients, and anticoagulation is recommended for these higher-risk patients to minimise their risk of stroke. However, few studies have investigated AF occurring during an episode of sepsis, and the benefit of anticoagulation to prevent ischaemic stroke in this group is subsequently less known.

This study aims to determine whether patients with sepsis should be anticoagulated to prevent ischaemic stroke. Outcomes, including bleeding events, mortality, recurrence of AF or atrial flutter (AFL), and any cause of hospitalisation within 2 years from initial hospitalisation, will also be examined.

The study cohort will consist of sepsis patients who were admitted to the Canberra Hospital between January 2010 and January 2020 and who developed AF or AFL for the first time during their admission.

Data will be linked to the National Death Index.

Study findings will be used to determine the impact of different treatment strategies in sepsis patients with AF. Clinicians can use this information to better inform treatment protocol for these patients.

Education to employment pathways for people with disability in South Australia (EO2020/4/1196)

Applicant: SA Department of Human Services and SA Office for Data Analytics
Approval valid until: 30 June 2023

The National Disability Data Asset (NDDA) is a joint, integrated data project aiming to bring together Commonwealth and state data to provide new insights for the future development of policy for people with disability. This project is the fourth of 5 test cases that will be used as pilot studies to test the viability of the NDDA while informing disability policy and identifying gaps and data remediation requirements.

This study aims to explore barriers to employment, identify background and pathway factors that explain variations in outcome, identify supports which help to close the gap between people with disability and the general population, and describe the pathways into employment or further education for young adults with disability.

The study cohort will consist of students enrolled in Year 10 (or equivalent) in South Australian public schools between 1 January 2005 and 31 December 2019.

Data will be linked to the following datasets:

• Medicare Consumer Directory
• National Death Index
• National Disability Insurance Scheme
• Disability Services National Minimum Dataset
• Personal Income Tax
• Data Over Multiple Individual Occurrences (DOMINO; Centrelink Services)
• Higher Education Information Management System
• Vocational Education and Training
• Several SA Education datasets.

Study findings will be used to provide an understanding of the extent to which people with disability interact with the education and employment systems and the impact that disability services and support have on outcomes. Governments can use this information to implement effective support and disability services for people with disability.

Analysing the effects of antenatal care, birth conditions and socioeconomic status on early childhood mortality in NSW using linked data (EO2020/4/1197)

Applicant: Australian Institute of Health and Welfare
Approval valid until: 31 December 2023

There is a general understanding of the underlying risk factors in child mortality. Such risk factors include the conditions of birth, maternal health and behaviour during pregnancy, and the socio-economic conditions in which the child is raised. However, it is unclear which risk factors play a primary role in child deaths in NSW.

This study aims to better understand and quantify the risk factors behind child mortality in NSW.

The study cohort will consist of all children born in NSW between 2005 and 2008 and their birth mothers. The study cohort will be drawn from the NSW Perinatal Data Collection and the NSW Registry of Births, Deaths and Marriage.

Data will be linked to the National Death Index.

Study findings will facilitate a better understanding of the patterns and underlying sources of child mortality in NSW. Healthcare practitioners can use this information to reduce rates of child mortality.

Repurposing bisphosphonate drugs to combat respiratory infection in COVID-19 (EO2020/4/1203)

Applicant: Garvan Institute of Medical Research
Approval valid until: 30 June 2023

Bisphosphonates are a class of drug commonly used to treat osteoporosis. In addition to increasing quality of life and survival rates among patients with osteoporosis, these drugs may also reduce mortality rates among patients with pneumonia. In laboratory studies, bisphosphonate treatment has boosted the actions of immune cells in the lungs. COVID-19 is also characterised by impaired lung functioning and breathing difficulties. Bisphosphonates may therefore have some utility during the early stages of a COVID-19 infection.

This study aims to determine whether bisphosphonates can protect elderly patients with COVID-19 from developing pneumonia and if pneumonia is contracted, whether bisphosphonates can reduce its severity and subsequent risk of mortality. The researchers have hypothesised that COVID-19–positive individuals receiving bisphosphonate therapy will have a lower risk of developing pneumonia and if pneumonia does develop, these patients will be less likely to be admitted to intensive care and less likely to require airway support compared with those who were not prescribed bisphosphonates.

The study cohort will consist of COVID-19–positive cases, aged over 50 years at the time of infection, who received bisphosphonate treatment in the 5 years prior to their COVID-19 diagnosis.

The study will also include a comparator group of COVID-19–positive cases, aged over 50 years at the time of infection, who did not receive bisphosphonate treatment in the 5 years prior to their COVID-19 diagnosis.

Data will be linked to the following datasets:

• Medicare Consumer Directory
• Pharmaceutical Benefits Scheme
• National Death Index
• Australian Cancer Database
• several state and territory health datasets.

Study findings will guide and inform healthcare policy and treatment protocols for the management of COVID-19 among elderly patients.

Services and supports used by people living with disability (including psychosocial disability) and mental health issues – Victorian NDDA test case (EO2020/4/1205)

Applicant: Department of Families, Fairness and Housing Victoria (DFFH)
Approval valid until: 30 June 2023

The National Disability Data Asset (NDDA) is a joint, integrated data project that aims to bring together Commonwealth and state data to provide new insights for the future development of policy for people with disability. This project is the fifth of 5 test cases which will be used as pilot studies to test the viability of NDDA to inform disability policy while identifying gaps and data remediation requirements.

This study aims to provide a holistic picture of the disability and mental health system in Victoria to inform the development of improved health and mental health services for this population.

The study cohort will consist of all Victorian residents who received disability support between 1 July 2008 and 30 June 2020. The study cohort will be drawn from the National Disability Insurance Scheme, Disability Services National Minimum Data Set, and Data Over Multiple Individual Occurrences (DOMINO; Centrelink Services).

The study cohort will be linked to the following datasets:

• Medicare Consumer Directory
• National Death Index
• Medicare Benefits Schedule
• Pharmaceutical Benefits Scheme
• National Disability Insurance Scheme
• Data Over Multiple Individual Occurrences (DOMINO; Centrelink Services)
• Disability Services National Minimum Data Set
• several Victorian datasets.

Study findings will be used to identify the needs of people living with disability (including psychosocial disability) and those with mental health issues. The Victorian Government can use this information to target the provision of support services to individuals with disability.

Estimation of the incidence of suicide and other causes of death of ex-serving Australian Defence Force members (EO2020/4/1225)

Applicant: Australian Institute of Health and Welfare
Approval valid until: 31 December 2024

This project involves the access, integration, transfer, and analysis of data to support the AIHW–Department of Veteran Affairs research partnership.

There has been ongoing community concern about the issue of suicide within the veteran community. This study aims to monitor the rate of suicide among serving and ex-serving Australian Defence Force (ADF) personnel while also identifying risk and protective factors for suicide. Specific aims are:

1. to identify the number and distribution by year and service status of suicides in the study population
2. to determine whether any differences can be detected between the study population and the proportion and rate of suicide in the general community
3. to identify significant factors and relationships that may be influencing the number of suicides
4. to calculate counts, rates, and proportions of deaths by all causes in the study population and to compare these to the general population.

The study cohort will consist of all serving, Reserve, and ex-serving ADF members with at least 1 day of service since 1 January 1985.

The study cohort will be linked to the following datasets:

• Medicare Consumer Directory
• National Death Index
• Department of Veteran Affairs Client Extract
• Defence Suicide Database
• Defence Personnel data.

Study findings will inform policy and targeted interventions designed to prevent suicide. Healthcare professionals and clinicians can use the study findings to improve the health and well-being of serving and ex-serving ADF members.

HPV vaccination, treatment of precancerous cervical lesions and adverse perinatal outcomes in NSW 2000–2018, a data linkage study (EO2020/5/1118)

Applicant: Cancer Council NSW
Approval valid until: 30 June 2031

Human Papillomavirus (HPV) can lead to precancerous abnormalities of the cervix, cervical cancer, and genital warts. Overseas studies have shown that treatment of the precancerous cervical abnormalities is associated with adverse outcomes in future pregnancies such as preterm births. To quell the impact of HPV, Australia launched a National HPV vaccination program in 2007, initially vaccinating 12 to 13-year-old females. The program was expanded in 2013 to include young males. The National HPV vaccination program has been one of the most successful vaccination programs in Australian history. It has been predicted that, by 2035, Australia will eliminate the public health risk of cervical cancer.

This study aims to explore the relationship between the National HPV vaccination program, precancerous cervical abnormalities, and adverse pregnancy outcomes. It will also explore the costs and savings associated with the National HPV vaccination program while identifying the factors associated with participation in the cervical cancer screening program.

The study cohort will consist of approximately 3.3 million women who gave birth to a child in NSW between 2000 and 2017, and their babies. Births are recorded for live births and stillbirths if either gestational age is at least 20 weeks or if birth weight is 400 grams or greater. The cohort will be drawn from the NSW Perinatal Data Collection and NSW Birth Registration.

The study cohort will be linked to the following datasets:

• Australian Immunisation Register
• Pharmaceutical Benefits Scheme
• Medicare Benefits Schedule
• National Death Index.

Study findings will contribute to an evidence base about relationships between precancerous cervical abnormalities, adverse pregnancy outcomes, and the National HPV vaccination program. Findings will also provide insight into vaccine hesitancy and the factors underlying it. Healthcare policymakers and healthcare professionals can then develop targeted campaigns to increase the uptake of the HPV vaccine within the community.

Leveraging electronic medical records and routine administrative data: towards a population approach for monitoring dementia frequency, risk factors and management (EO2020/5/1120)

Applicant: Monash University
Approval valid until: 31 December 2023

Dementia is a devastating and debilitating disease, with 400,000 sufferers affected, along with their families. This number is expected to triple by 2050, placing a huge burden on healthcare services across Australia. Despite this, medical records and administrative data have not been fully harnessed to accurately capture trends in dementia incidence, prevalence, and mortality in Australia.

The long-term aim of this study is to develop and maintain a high-quality and accurate registry of dementia prevalence, incidence, geospatial distribution, risk factors and co-morbidities, management, and outcomes using a combination of routinely collected data sources, including in-hospital data such as Electronic Medical Records. Furthermore, this study aims to use these data to create and validate algorithms for identifying cases of dementia and to apply these algorithms to estimate the prevalence of dementia in specific cohorts.

The study cohort will consist of two groups derived from the Peninsula Health (PH) data warehouse. Group A will be all PH-zone residents aged 60 years or older with a PH medical record, comprising:

• Cohort 1a and 1b: PH-zone residents with a record in the Cognition Dementia and Memory Service (CDAMS) dataset (diagnosed dementia [1a], memory loss but no diagnosis [1b]).
• Cohort 2: PH-zone residents without dementia (no CDAMS record and clinically confirmed not to have memory loss).

Group B is all PH-zone residents with a Medicare Enrolment File record not included in Group A.

The study cohort will be linked to the following datasets:

• Medicare Enrolment File
• Pharmaceutical Benefits Scheme
• Medicare Benefits Schedule
• National Death Index
• National Aged Care Data Clearinghouse.

Study findings will facilitate a greater understanding of dementia, including its prevalence, incidence, risk factors, and comorbidities. Healthcare professionals can use study findings to improve quality of life for dementia patients while also identifying individuals who may be at risk of developing dementia.

The Candid Study: outcomes of childhood type I diabetes (EO2020/5/1166)

Applicant: The Children’s Hospital at Westmead
Approval valid until: 1 June 2026

A type I diabetes diagnosis is a reality facing approximately 1 in 720 Australian children aged under 14 years annually. Type I diabetes has an enormous disease burden. Patients and their families must meticulously regulate diet, insulin intake, and glycaemic control. A type I diabetes diagnosis is associated with a high morbidity rate, including high rates of psychiatric illness and common cancers, especially for adults who were diagnosed during childhood.

The aim of this study is to investigate the long-term healthcare and health outcomes of childhood type I diabetes.

The study cohort will consist of 5,944 individuals who were all diagnosed with type I diabetes before the age of 16. The study cohort will be drawn from the NSW APEG Childhood Type I Diabetes Register, the Endocrinology Patient Management System at the Westmead Children’s Hospital, and the Prepubertal cohort and the Sydney Paeds Retinovascular Geometry Cohort.

The study cohort will be linked to the following datasets:

• Medicare Enrolment File
• Medicare Benefits Schedule
• Pharmaceutical Benefits Scheme
• National Death Index.

Study findings will provide much-needed information about the long-term health outcomes and the healthcare implications arising from a childhood type I diabetes diagnosis. Healthcare professionals can use this information to target risk factors for adverse health outcomes in adulthood after a childhood diagnosis of type I diabetes. Healthcare professionals can also use the study findings to improve patient quality of life.

The impact of specialist neonatal care on long-term child outcomes (EO2020/5/1191)

Applicant: University of Technology Sydney
Approval valid until: 31 December 2025

Over 300,000 babies are born each year in Australia, 17 per cent of which are admitted to specialist care units or neonatal intensive care units. The short-term impact of these units and services is evident in the survival rate of critically ill babies, which in recent years was 3 out of 4 babies, compared with a survival rate of 1 out of 4 in 1980. As well as the strong evidence of a short-term impact of these services, there is also evidence of a long-term impact.

The aim of this study is to explore the long-term impacts of newborn care in Australia, such as healthcare needs, healthcare costs, and developmental outcomes in the first year of school.

The study cohort will consist of mothers and their babies. It will be derived from the NSW Perinatal Data Collection.

Data will be linked to the following datasets:

• Pharmaceutical Benefits Scheme
• Medicare Benefits Schedule
• National Death Index. 

Study findings will provide much-needed information about the long-term health and developmental outcomes for critically ill babies treated in specialist care units or neonatal intensive care units.

Enhancing PCOR–ANZ using data linkage: a pathfinder pilot (EO2020/5/1202)

Applicant: University of South Australia
Approval valid until: 1 January 2023

Prostate cancer is the most diagnosed cancer and second leading cause of cancer-related mortality in Australian men, placing a large burden on patients, their loved ones, and the healthcare system. The Australian and New Zealand Prostate Cancer Outcomes Registry (PCOR–ANZ) is a large-scale registry that collects information about the diagnoses, treatments, and outcomes of prostate cancer patients in Australia and New Zealand. It is an invaluable resource for medical staff and researchers, presenting a detailed overview of prostate cancer in Australia and New Zealand and offering insight into effective treatments.

This study aims to update the PCOR –ANZ by investigating mortality and survival outcomes of individuals diagnosed with prostate cancer.

The study cohort will consist of approximately 40,000 South Australian men who were diagnosed with prostate cancer after 1 January 2002. This cohort will be drawn from the South Australian Population-based Cancer Registry or the South Australian Prostate Cancer Clinical Outcomes Collaborative. The study cohort will be linked to the National Death Index.

Healthcare professionals can use the study findings to improve the detection and diagnosis of prostate cancer as well as its treatment and management. Improved detection and diagnosis of prostate cancer, including enhanced treatment and management, will contribute to improved health outcomes and better quality of life for prostate cancer patients.

Standard versus Accelerated initiation of Renal Replacement Therapy in Acute Kidney Injury (STARRT–AKI): a multi-centre, randomized, controlled trial (EO2020/5/1204)

Applicant: The George Institute for Global Health
Approval valid until: 31 December 2022

Acute kidney injuries (AKI), also known as acute renal failure, occur in 20 per cent of patients treated in Intensive Care Units. Severe AKI is associated with a significant disease burden and a high mortality rate. Renal replacement therapy (RRT) is often used to treat severe AKI, resulting in sizeable medical expenses and decreased quality of life. Furthermore, AKI often results in the need for institutional care and the development of chronic and end-stage kidney disease. There is currently no efficacious treatment that reduces the disease burden or the mortality and morbidity of AKI.

This study is a continuation of the International STARRT–AKI study. The aim of the study is to determine the optimal timing for RRT initiation. Study investigators wish to establish whether immediate RRT initiation is associated with enhanced survival and renal recovery compared with the standard approach to RRT initiation which is driven by clinical judgement and conventional indicators.

The study cohort consists of all 198 Australian participants in the original STARRT–AKI study, who were recruited from 16 hospitals across Australia. These hospitals are:

• Royal North Shore Hospital
• Royal Prince Alfred Hospital
• Nepean Hospital
• Concord Hospital
• St Vincent’s Hospital
• The Alfred Hospital
• Austin Hospital
• Ballarat Hospital
• Bendigo Hospital
• Geelong Hospital
• Eastern Health (Box Hill and Maroondah Hospital)
• Western Health (Footscray and Sunshine Hospital)
• The Northern Hospital
• Flinders Medical Centre
• Princess Alexandra Hospital
• Sunshine Coast University Hospital.

The study cohort will be linked to the National Death Index.

Study findings will enable researchers to determine the best course of treatment for patients with AKI, leading to a decreased disease burden, better health outcomes, and improved quality of life.

Master Linked Dataset 2021: Cancer cure outcomes in NSW and ACT (EO2020/5/1211)

Applicant: Cancer Institute NSW
Approval valid until: 24 December 2025

Cancer contributes the largest burden of disease in Australia. It accounts for 18 per cent of all disease burden and 9 per cent of all health system expenditure.

This study aims to establish and maintain a linked dataset containing cancer screening, incidence, treatment, and outcome data for individuals diagnosed with cancer in the ACT and NSW. The dataset will be used to decrease cancer burden by guiding cancer research and improving the treatment and management of cancer.

The study cohort will consist of all individuals on the NSW Cancer Registry and the ACT Cancer Registry. The cohort also includes people with cancer related diagnoses from the NSW Admitted Patients Data Collection.

The study cohort will be linked to the following datasets:

• Medicare Benefits Schedule
• Pharmaceutical Benefits Scheme
• National Death Index
• Bowel Cancer data from the National Cancer Screening Registry
• Herceptin data.

Study findings will contribute to the development of a comprehensive data source that researchers and healthcare professionals can use to further improve the detection and diagnosis of cancer as well as its treatment and management. These benefits will then result in better health outcomes and improved quality of life for cancer patients while also reducing the burden of disease and mortality rates.

Linkage of the ASPREE and ASPREE-XT participant cohorts with the AIHW’s NACDC dataset and NHMD dataset (EO2020/5/1214)

Applicant: Monash University
Approval valid until: 31 December 2024

ASPREE (ASPirin in Reducing Events in the Elderly) was a large-scale study that investigated whether low-dose aspirin reduces physical disability and dementia in healthy people aged 70 and over. Findings indicated that aspirin use was not associated with any reductions in disability or dementia. However, aspirin use was linked to an increased risk of major haemorrhage.

The ASPREE-XT (ASPREE-eXTension) is a second study that will follow-up the original ASPREE study participants. The ASPREE-XT study will investigate long-term outcomes of aspirin treatment. Specific outcomes include incidence and metastases of various cancers, including mortality, as well as cognitive decline and physical frailty.

The study cohort consists of two groups. The first will be drawn from the ASPREE Clinical Trial cohort (N = 19,114 participants aged 70 and over). The second group consists of 14,989 participants from the original ASPREE cohort who had not withdrawn or died at the end of the intervention phase of the trial and who gave consent for their data linked.

Data will be linked to the National Aged Care Data Clearinghouse and the National Hospital Morbidity Database.

Study findings will contribute to a theoretical evidence base about the utility of aspirin as a treatment approach for cardiovascular disease, dementia and cancer. Healthcare professionals can use study findings to guide and inform their assessment and treatment of elderly individuals, particularly those with physical disability and/or dementia.

Prescribing of psychotropic drugs to people with neurodevelopmental disability (EO2020/5/1215)

Applicant: NDIS Quality and Safeguards Commission
Approval valid until: 31 December 2021

In 2020, the Australian Institute of Health and Welfare in association with the NDISQSC released a report that outlined mortality trends for individuals receiving specialist disability support services. A key finding was that mortality rates were 4.7 times higher among people receiving specialist disability support compared with the general population. Rates and causes of death varied according to age, sex, and type of disability.

This study investigates whether any adverse effects are linked to psychotropic medication use among individuals with neurodevelopmental disabilities accessing specialist disability services.

The study cohort will consist of approximately 290,000 individuals with a neurodevelopmental disability. These individuals will be drawn from the AIHW Disability Services National Minimum dataset.

Data will be linked to the following datasets:

• Pharmaceutical Benefits Scheme
• Medicare Benefits Schedule
• National Hospital Morbidity Database
• National Non-Admitted Patient Emergency Department Care Database
• National Death Index.

Study findings will provide information about prescription patterns of psychotropic medications among individuals with neurodevelopmental disabilities and whether any adverse health effects are linked to psychotropic medication use. Healthcare professionals can use study findings to maximise health outcomes and quality of life among individuals with neurodevelopmental disabilities.

Binational Colorectal Cancer Audit – linkage to the National Death Index (EO2020/5/1222)

Applicant: Colorectal Surgical Society of Australia and New Zealand
Approval valid until: 31 December 2023

Colorectal cancer presents a significant health challenge. In 2019, it was the second-most common cause of cancer-related mortality in Australia. The Binational Colorectal Cancer Audit (BCCA) is a multisite, clinical register, comprised of 43,000 colorectal cancer patients. The BCCA focuses on the diagnosis, treatment, and surgical outcomes of individuals with colorectal cancer in Australia and New Zealand. This study aims to update the existing data within the BCCA registry by identifying deceased individuals and their cause(s) of death.

The study cohort will consist of approximately 40,000 individuals drawn from the BCCA.

The cohort will be linked to the National Death Index.

Study findings will guide and inform future research that investigates the incidence and prevalence of colorectal cancer as well as patient outcomes and survival rates. Healthcare professionals can use study findings in the treatment and management of colorectal cancer, maximising survival outcomes and quality of life.

National eye and systemic diseases data linkage cohort (EO2020/5/1224)

Applicant: Centre for Eye Research Australia
Approval valid until: 1 February 2026

Systemic diseases, such as cardiovascular disease (CVD), dementia, and chronic kidney disease (CKD) place an enormous burden on the lives of Australians and the Australian healthcare system. A key tool in reducing the mortality and morbidity of systemic diseases are risk assessments. Risk assessments predict the magnitude and burden of a disease, enabling early intervention and decreasing the burden of disease.

This study will examine associations between eye diseases, major chronic illness (dementia, CVD, and CKD) and premature death to develop a predictive algorithm that will aid healthcare professionals in the early detection of severe chronic illness.

The study cohort will consist of approximately 100,000 people over the age of 18 with at least two records of ocular imaging between 1990 and 2020. The cohort will be drawn from the Royal Victorian Eye and Ear Hospital, the Sydney Eye Hospital, Vision Eye Institute, Specsavers, and Bupa Optical.

Data will be linked to the following datasets:

• National Death Index
• Medicare Benefits Schedule
• Pharmaceutical Benefits Scheme.

Clinicians can use the study findings to improve the detection of individuals at risk of later developing major chronic illness, such as CVD, dementia, and CKD while reducing the burden of disease associated with these chronic conditions.

Pathways of Care Longitudinal Study (POCLS): the outcomes of children and young people in out-of-home care—Accessing Pharmaceutical Benefits Scheme and Medicare Benefits Schedule data for cohort participants (EO2019/1/406)

Applicant: NSW Department of Communities and Justice
Approval valid until: 1 May 2021

This study investigates the outcomes of children placed in out-of-home care (OOHC). Specifically, this study examines the following areas:

• outcomes of children placed in OOHC compared to those returned to their parents
• associations between educational, health, and justice outcomes and OOHC placement types
• relationships between OOHC placement, chronic ill-health, abuse and neglect, and the frequency of primary and secondary health service use.

The NSW Department of Communities and Justice will prepare a study cohort consisting of OOHC cases and comparators. OOHC cases will consist of children aged between 0 and 17 years, placed into OOHC, under the supervision of NSW Department of Communities and Justice between May 2010 and October 2011. Comparators will consist of OOHC children who were returned to their parents.

Data will be linked to the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme.

Study findings will guide and inform child welfare policies. Findings will also contribute to an evidence-base designed to optimise the health and welfare of children placed in OOHC.

Computed tomography and positron emission tomography surveillance imaging in asymptomatic Stage III melanoma patients—a prospective cohort study of clinical benefit and economic implications (EO2019/1/454)

Applicant: University of Sydney
Approval valid until: 30 June 2021

Periodic imaging is usually effective at detecting melanoma. Unfortunately, periodic imaging can inadvertently increase cancer risk due to increased radiation exposure. Furthermore, it can also increase the risk of over-diagnosis by detecting suspected tumours that are actually non-malignant. In addition, imaging also places a substantial financial burden on the healthcare system, particularly when suspected tumours turn out to be benign.

This study investigates the accuracy of periodic imaging in the early detection of melanoma.

A study cohort, consisting of asymptomatic melanoma patients who underwent surgery and who either attended annual imaging, at the Melanoma Institute Australia, between 01 January 2000 and 31 August 2017, will be drawn from the Melanoma Research Database. Study investigators will compare melanoma symptoms between patients who attended annual imaging and those who did not.

Data will be linked to the National Death Index to establish survival rates and to identify deceased individuals where melanoma was the primary cause of death.

Study findings will inform an evidence base guiding decisions about diagnostic imaging among melanoma patients and those at risk of developing melanoma.

Medical histories of patients with motor neurone disease (MND) (EO2019/1/481)

Applicant: University of Queensland
Approval valid until: 1 April 2023

Motor neurone disease (MND) is a terminal disease, affecting approximately one in four Australians. The condition is quite debilitating, adversely affecting an individual’s capacity to meet essential daily activities. MND patients thus display a number of complex needs and require ongoing care and support. Meeting these complex needs, unfortunately, places substantial emotional and, in particular, financial demands on households.

Although there is no cure for MND, riluzole, a pharmaceutical intervention, has displayed some effectiveness at slowing down the progression of this neurological condition.

This study examines patterns of healthcare use among MND patients, before and after diagnosis.

The AIHW will prepare a study cohort by drawing individuals from the National Death Index with an MND-related cause of death, and individuals from the Pharmaceutical Benefits Scheme with a riluzole dispensary. The AIHW will also prepare a comparison group, drawn from the Medicare Enrolment File and matched to the study cohort by age and sex.

The study cohort and the comparison group will be linked to the Medicare Benefits Schedule to identify health service use, and to the Pharmaceutical Benefits Scheme to identify patterns if medication use.

Study findings will assist medical researchers and healthcare professionals to improve the care and management of MND patients.

Comparing the long-term outcome of right ventricle to pulmonary artery conduit insertion using the Medtronic Freestyle Porcine valve versus pulmonary allograft valve in adult patients with congenital heart disease (EO2019/1/497)

Applicant: The Royal Melbourne Hospital
Approval valid until: 31 December 2024

Pulmonary valve replacement (PVR) is a common procedure among adult patients with congenital heart disease. Historically, donated human pulmonary valves (allografts) were used to replace a patient’s own pulmonary valve. However, these grafts calcify over time. To overcome this, bioprostheses, such as the porcine Medtronic Freestyle heart valve, have been developed. This particular bioprosthesis has been linked to reduced symptoms of heart failure.

This study compares long-term outcomes between congenital heart disease patients who underwent a Medtronic Freestyle valve insertion versus those who received a pulmonary allograft valve.

Data will be linked to the National Death Index.

Study findings will inform treatment approaches for patients with congenital heart disease.

Women Healthy Ageing Project (WHAP)—linkage to national health data (EO2019/1/504)

Applicant: University of Melbourne
Approval valid until: 1 March 2022

The Women’s Healthy Ageing Project (WHAP) is a longitudinal study of the health and well-being of Australian women from middle age onwards. The WHAP began in 1991, with baseline participants now 70 years or older.

In 2016, the WHAP cohort was linked to the National Death Index to identify deceased study participants and their cause(s) of death.

To further expand the coverage of the WHAP, this study investigates patterns of healthcare and medication use.

WHAP data will be linked to the National Death Index, the Australian Cancer Database, the National Aged Care Data Clearinghouse, the Medicare Benefits Schedule, and the Pharmaceutical Benefits Scheme.

Study findings will provide important information about patterns of healthcare and medication use among middle-aged and older Australian women, informing future health policies and treatment practices.

Evaluation of four community pharmacy programs funded under the Sixth Community Pharmacy Agreement (EO2019/1/507)

Applicant: HealthConsult
Approval valid until: 31 January 2020

The Sixth Community Pharmacy Agreement (6CPA) is an initiative, developed by the Commonwealth Government, designed to expand existing community pharmacy programs. These programs aim to ensure that medication and other pharmaceutical interventions are available and accessible to disadvantaged groups in the community, improving patient care and health outcomes.

This study evaluates four community pharmacy programs funded under the 6CPA. Specific evaluation outcomes include medication adherence, healthcare resource use and cost effectiveness.

The study cohort will consist of any individual in a 6CPA program, who agreed to participate in the program between November 2018 and January 2019.

6CPA program data will be linked to the Medicare Enrolment File, the Medicare Benefits Schedule, and the Pharmaceutical Benefits Scheme. Study findings will inform the development of future community pharmacy programs to further improve patient care and health outcomes.

Provision of data from the National Death Index to enrich data available for research through the NBCF BreastScreen Demonstration Cohort (Lifepool) (EO2019/1/513)

Applicant: Peter MacCallum Cancer Centre
Approval valid until: 31 December 2026

The National Breast Cancer Foundation BreastScreen Demonstration Project, also known as the Lifepool project, is a collaboration between the National Breast Cancer Foundation, the Peter MacCallum Cancer Centre, the University of Melbourne, Melbourne Health and BreastScreen Victoria. It is a resource for research in the prevention and detection of breast cancer.

The aim of this study is to update the data in the Lifepool project by identifying deceased individuals and their cause(s) of death.

The Lifepool study cohort consists of approximately 54,000 women. Data will be linked to the National Death Index.

Study findings will enable healthcare professionals to update the Lifepool data, ensuring its accuracy and currency as a resource to inform future research in the areas of breast cancer and other important areas of women’s health.

Juvenile Justice National Minimum Dataset (JJ NMDS) and DOMINO data linkage project (EO2019/1/515)

Applicant: Australian Institute of Health and Welfare
Approval valid until: 1 March 2021

The over-representation of Aboriginal and Torres Strait Islander people—particularly those with histories of youth justice supervision—in the judicial system and in the correctional system was highlighted by the 2016 Council of Australian Governments (COAG) Prison to Work report. A key recommendation was that Commonwealth and state/territory governments share de-identified criminal justice data to monitor the flow of individuals within all aspects of the justice system.

This study examines pathways through the justice system and the welfare system among individuals with histories of youth justice supervision. This study, in particular, will consider transitions from youth justice facilities to adult correctional facilities, including employment and education outcomes and welfare use after release from youth justice supervision or adult correctional facilities.

The AIHW will prepare a study cohort by drawing data from Juvenile Justice National Minimum Dataset. Data about patterns of welfare use will be drawn from the DOMINO dataset.

Study findings will inform welfare policy and improve the transition of young people and adults from the judicial system to the wider community.

REDDISH Study: REDucing Delays In aneurysmal Subarachnoid Haemorrhage (EO2019/1/518)

Applicant: University of Tasmania
Approval valid until: 31 December 2019

Aneurysmal subarachnoid haemorrhage (aSAH) is a rare, yet devastating form of stroke. It is usually caused by a ruptured brain aneurysm. High rates of mortality have been linked to aSAH. Conversely, patients who manage to survive aSAH display high levels of disability, requiring extensive care and support, placing substantial financial burdens on households and the wider healthcare system.

Healthcare professionals can mitigate the disabling effects of aSAH, among survivors, through immediate access to specialist radiological, surgical and intensive care facilities.

The study has the following aims:

• investigate time delays in the treatment of aSAH patients across Tasmania and South–East Victoria
• identify factors that contribute to treatment delays
• determine the best time to implement treatment to maximise patient outcomes
• establish clinical pathways through which patients can receive timely intervention.

This study will be the first to examine delays in the provision of treatment for aSAH and to identify causes of these delays.

Study investigators will draw a cohort of approximately 800 patients with aSAH from Tasmanian and Victorian hospitals data.

Data will be linked to the National Death Index to identify all deceased patients and their cause(s) of death.

Study findings will inform hospital interventions, ultimately reducing treatment delays and enhancing aSAH patient quality of life.

Linking primary, secondary and tertiary care data to build prediction models for total knee replacement in patients with osteoarthritis—linkage to MBS and PBS (EO2019/1/520)

Applicant: BioBrid Australia
Approval valid until: 1 February 2024

Osteoarthritis is a degenerative joint condition affecting over two million Australians. Those with severe osteoarthritis, who are unresponsive to medication and conservative management, may benefit from total joint replacement surgery.

In the last 10 years, rates of total knee replacement surgery have increased significantly. This has placed substantial demands on the healthcare system. Furthermore, approximately 20 per cent of patients who undergo a total knee replacement do not benefit.

This study seeks to identify patients who are likely to benefit from total knee replacement surgery versus those who are unlikely to benefit.

The study cohort will consist of approximately 475,000 patients, drawn from multiple healthcare datasets.

Data will be linked to the National Death Index, the Medicare Benefits Schedule, and the Pharmaceutical Benefits Scheme.

Study findings will inform the development of prediction models. Healthcare professionals can use these models to identify patients with several osteoarthritis who are likely to benefit from a total knee replacement and those who are unlikely to benefit from this treatment.

LSDP NDI-cause-of-death data linkage project (EO2019/1/522)

Applicant: Australian Department of Health
Approval valid until: 30 June 2020

In Australia, patients with rare medical conditions rely on medication to promote survival and maintain quality of life. These medications can be very costly to patients, their families and their carers.

To reduce the financial burden, the Commonwealth Government implemented the Life Saving Drugs Program (LSDP). Through this program, the Commonwealth Government fully subsidises the cost of life-saving medications for patients with rare diseases.

This study examines the effectiveness of the LSDP in facilitating survival and maintaining quality of life among patients with rare diseases.

The study cohort consists of patients who received LSDP-funded medications and who are known to be deceased.

A subset of the patient cohort will be linked to the National Death Index to identify all causes of death.

Findings will provide important information about the safety and efficacy of LSDP medications.

Demonstrating capability of linking MedicineInsight with MBS/PBS data (EO2019/1/531)

Applicant: NPS MedicineWise
Approval valid until: 30 June 2020

MedicineInsight, a longitudinal general practice data platform, was designed to improve the post-marketing surveillance of medicine use in Australia and to support improvement activities in general practices.

This study is a feasibility project which seeks to establish whether it is possible to link de-identified MedicineInsight data to the Medicare Benefits Schedule and to the Pharmaceutical Benefits Scheme.

Study findings will inform evidence-based decisions regarding health policy and health priority areas for funding to improve health outcomes for general practice patients.

Analyses for Royal Commission into Aged Care Quality and Safety (EO2019/1/534)

Applicant: Australian Institute of Health and Welfare
Approval valid until: 31 December 2021

The Royal Commission into Aged Care Quality and Safety was actioned on 8 October 2018 with a final report expected in 2020.

The AIHW will undertake this study as part of the Royal Commission.

This study has the following research questions:

• What is the nature of potentially preventable hospitalisations from residential aged care?
• How does the use of pharmaceuticals vary between individuals living in residential aged care compared to those receiving aged care in their home, and the general older community?
• How does the use of primary and specialist health care vary between those living in residential aged care, those receiving aged care in their home, and the general older community?
• How and when do people in aged care use acute care versus primary/specialist care?

Linked data will be analysed from the following datasets: the National Aged Care Data Clearinghouse, the National Death Index, the Medicare Benefits Schedule, and the Pharmaceutical Benefits Scheme.

Study findings will inform the Royal Commission, contributing to the following areas of aged care in Australia:

• establishing the extent to which aged care services meet the needs of individuals accessing these
• ascertaining how best to deliver aged care services to individuals with disabilities and those with dementia residing in aged care facilities
• identifying future challenges and opportunities for delivering accessible, affordable, and high-quality aged care services.

Mortality of patients of the MindSpot Clinic (EO2019/2/242)

Applicant: Macquarie University
Approval valid until: 30 June 2021

In Australia, the two most prevalent forms of psychological distress are anxiety and depression, with the latter being the most common predictor of suicide. The rising prevalence of anxiety and depression and the increased rates of suicide-related mortality have, unfortunately, placed significant emotional and financial burdens, not only on the healthcare system, but also on many households and workplaces.

Many interventions exist to manage depression and anxiety, such as psychological therapies, medication and telephone and internet counselling.

The MindSpot Clinic, funded by the Commonwealth Government, is a community resource which provides telephone and internet counselling to individuals with anxiety and/or depression, including those reporting suicidal thoughts and plans.

To examine the effectiveness of the MindSpot Clinic in treating individuals with anxiety and/or depression, this study seeks to investigate suicide rates among individuals who registered with MindSpot between 2013 and 2016.

Data will be linked to the National Death Index to obtain relevant mortality data.

Study findings will enable therapists at the MindSpot Clinic to assess the effectiveness of existing interventions in the prevention of suicide. Findings will also inform any necessary improvements to current interventions to maximise quality of life among those with anxiety and/or depression.

Surveillance of health service use among people with hepatitis C or hepatitis B virus infection in South Australia and Northern Territory: A population-based linkage study (EO2019/2/1009)

Applicant: South Australian Health and Medical Research Institute (SAHMRI)
Approval valid until: 1 July 2025 

This study examines hepatitis B and C incidence in South Australia and the Northern Territory. It also examines treatment use and health outcomes.

The study cohort will consist of individuals with a hepatitis B or C notification in South Australia or the Northern Territory.

Data will be linked to the National Death Index, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme.

Findings will inform future policies designed to reduce the burden of disease associated with hepatitis B and C.

National data linkage for HIV surveillance—enhancing routine surveillance systems to provide ongoing estimates for the HIV cascade of care in Australia (EO2019/2/1031)

Applicant: The Kirby Institute, University of New South Wales
Approval valid until: 31 December 2023

In Australia, HIV is an incurable and a debilitating disease, placing significant financial demands on the healthcare system. To reduce the burden of disease and ultimately to supress the virus, healthcare professionals have introduced several initiatives: regular surveillance and testing, commencing treatment early, and adherence to treatment. These initiatives represent the HIV cascade of care—a widely used approach to describe the benchmark stages along the care pathway to viral suppression.

This study attempts to enhance routine HIV surveillance by improving the accuracy of the current cascade of care and producing cascades for priority populations.

A study cohort will be drawn from the National HIV Registry and linked to the National Death Index, the Medicare Enrolment File, the Medicare Benefits Schedule, and the Pharmaceutical Benefits Scheme.

Healthcare professionals can use study findings to increase the accuracy of HIV surveillance and reduce the debilitating effects of this viral infection.

Linkage of AIHW death data with tumour-banked specimens held in the Kolling Institute Tumour Bank (EO2019/2/1033)

Applicant: University of Technology, Sydney
Approval valid until: 31 May 2024

The Kolling Institute Tumour Bank, established in 1992, collects and stores tumour tissue from patients undergoing surgery. The Tumour Bank also collects and stores tissue and blood samples from patients at risk of cancer. In total, approximately 10,000 patients with different tumour types, both benign and malignant, have been recruited since the Tumour Bank was first established.

This study examines survival rates among patients in the Tumour Bank.

The study cohort consists of Tumour Bank patients, who underwent surgery at either Royal North Shore Hospital, North Shore Private Hospital or Mater Hospital.

Data will be linked to the National Death Index.

Study findings will enable healthcare professionals to update the Tumour Bank by identifying deceased patients and their cause(s) of death.

Improving morbidity and mortality outcomes of patients with mental health symptoms following acute coronary syndrome (EO2019/2/1039)

Applicant: University of Melbourne
Approval valid until: 30 April 2021

Psychological distress is a common response to life-threatening cardiovascular events. Patients have typically displayed symptoms of anxiety and depression in the months following a myocardial infarction. This psychological distress can be a risk factor for additional cardiovascular events and, in severe cases, mortality.

The ADVENT study, a large prospective investigation that ran from 2013 to 2016, examined the prevalence of depression and anxiety, among patients, one and two years after a myocardial infarction. It also investigated the interaction between psychosocial and biological factors in the onset and maintenance of depression and anxiety.

This study extends the scope of the ADVENT study by investigating whether psychological distress following a cardiovascular event is a risk factor for mortality.

ADVENT study cohort data will be linked to the National Death Index.

Healthcare professionals can use study findings to improve quality of life following a major cardiovascular event by reducing the risk of psychological distress and mortality.

Leaving military service: A mixed-methods study into the experience of transition from active service to civilian life among a subset of former Australian Defence Force members (EO2019/2/1052)

Applicant: University of Adelaide
Approval valid until: 31 December 2020

Australian Defence Force (ADF) personnel who transition from active service to civilian life represent a vulnerable group in the population. Exposure to potentially traumatic events, during active service, can significantly elevate their risk of developing depression and/or anxiety later in life. In severe cases, some personnel may engage in self-harm and suicide.

In response to this national concern, the Transition and Wellbeing Research Mental Health Prevalence Study investigated emotional well-being and help-seeking behaviour among transitioned ADF personnel. An important finding was that individuals who were medically discharged had higher psychological distress compared to those who were not medically discharged. Furthermore, a large number of transitioned personnel with a mental illness had not sought assistance.

This study extends the Transition and Wellbeing Research Mental Health Prevalence Study by examining, in more detail, the transition experience of personnel at risk of depression and anxiety.

Data will be linked to the National Death Index to identify deceased personnel so study investigators can exclude these individuals from the study.

Study findings will facilitate a better understanding of the needs of transitioned ADF personnel, enabling healthcare professionals to meet these needs.

Guideline-concordant breast cancer surgery and radiotherapy (GLANCER study) (EO2019/2/1057)

Applicant: University of New South Wales
Approval valid until: 31 December 2021

Surgery and radiotherapy are the most common treatments of breast cancer. However, the proportion of women who receive surgery and/or radiotherapy, in accordance with existing optimal care guidelines, is unknown. Furthermore, the factors that predict non-concordance are not clear.

This study investigates discrepancies between breast cancer care practices and existing best-practice guidelines.

The study cohort consists of women, in NSW, with an invasive in-situ breast cancer diagnosis. The study cohort will be drawn from the NSW Cancer Registry and the NSW Admitted Patient Data Collection, and will contain approximately 75,000 women.

Data will be linked to the National Death Index, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme.

Study findings will improve existing practices for the treatment and care of breast cancer patients, enhancing quality of life and reducing the burden of disease.

Bowel cancer screening patterns and outcomes in the 45 and Up Study Cohort (EO2019/2/1064)

Applicant: Cancer Council NSW
Approval valid until: 30 September 2020

In Australia, colorectal cancer is one of the leading causes of mortality among men and women. To reduce the burden of disease, the Commonwealth Government introduced the National Bowel Cancer Screening Program (NBCSP), encouraging routine screening for symptoms of colorectal cancer.

The NBCSP typically targets individuals aged over 45 years due to their elevated risk of colorectal cancer. However, little is known about patterns of colorectal cancer screening and colonoscopy use within this population sub-group.

This study examines colorectal cancer screening and colonoscopy use among individuals in the 45 and Up Study cohort.

A study cohort, drawn from the 45 and Up Study, will be linked to the NBCSP.

Study findings will provide important information colorectal cancer screening practises and colonoscopy use among individuals in the 45 and Up Study cohort.

Partners in prevention: Characteristics, demand and health services use of persons who are the subject of a suicide-related call to emergency services (EO2019/2/1068)

Applicant: Queensland Forensic Mental Health Service
Approval valid until: 11 January 2021

Emergency services (e.g. police, ambulance and mental health crisis assessment teams) provide a frontline response to mental health crises such as self-harm and suicide. In Australia, it is estimated that three out of every 100 individuals will attempt suicide during their lifetime. However, little is known about the number of suicide calls that police or ambulance responders receive each year and, more importantly, whether emergency responses are effective in meeting the needs of individuals at mental health crisis and at risk of suicide.

The Partners in Prevention, a study funded by Queensland Health, Suicide Prevention Health Taskforce and the National Health and Medical Research Council, has the following aims:

• establish the frequency and timing of suicide calls to first responders (e.g. police and paramedics)
• identify characteristics of individuals who are the subject of a suicide call
• explore care pathways before and after a suicide crisis.

A study cohort will be drawn from Queensland Police and Queensland Ambulance records.

Data will be linked to the National Death Index, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme.

Emergency service agencies can use study findings to inform best-practice models for responding to individuals at risk of self-harm and/or suicide in the community.

Australian Collaboration for Coordinated Enhanced Sentinel Surveillance (ACCESS) of Blood Borne Viruses (BBV) and Sexually Transmissible Diseases (STI) (EO2019/2/1070)

Applicant: Burnet Institute
Approval valid until: 31 December 2025 

ACCESS is a health surveillance system which monitors the incidence of and treatment of bloodborne viruses and sexually transmissible diseases in Australia. Approximately 150 clinics and laboratories participate in ACCESS.

This study investigates treatment patterns among ACCESS patients.

The study cohort will be drawn from 16 laboratories that contribute HIV and hepatitis B and C data to ACCESS.

Data will be linked to the Pharmaceutical Benefits Scheme.

Study findings will inform future updates to ACCESS. Healthcare professionals can use this data to improve the treatment of bloodborne viruses and sexually transmissible diseases.

Opioids and other prescription medicines use in people presenting to Queensland emergency departments for acute neck and back injury: A one-year community follow-up using data linkage (EO2019/3/1037)

Applicant: University of Queensland
Approval valid until: 31 December 2021

This study investigates opioid use patterns among individuals presenting with neck and/or back soft tissue injuries to hospital emergency departments.

The cohort will be drawn from emergency department presentations at six Queensland hospitals. It will consist of adult patients who presented with acute neck and/or back soft tissue injuries between 01 January 2019 and 30/06/2019.

Data will be linked to the National Death Index and the Pharmaceutical Benefits Scheme.

Study findings will inform the development of interventions to improve the management of patients presenting with acute neck and/or back soft tissue injuries to hospital emergency departments.

The impact of prenatal exposure on indicators of offspring neurodevelopment (EO2019/3/1040)

Applicant: Curtin University
Approval valid until: 10 October 2026

This study examines adverse health, developmental and educational outcomes, including risk factors, among infants.

The cohort will consist of babies, born between January 2008 and December 2017, drawn from the Queensland Perinatal Data Collection. The cohort will also contain the mothers of these babies.

The study cohort will be linked to the National Death Index, the Medicare Benefits Schedule, and the Pharmaceutical Benefits Scheme. Data will also be linked to the Australian Early Development Census to assess developmental and educational outcomes.

Study findings will inform an evidence base for infants who may be at risk of adverse health, developmental and educational outcomes. Healthcare professionals can use this evidence base to develop initiatives and approaches to assist these infants and their families.

Australian Orthopaedic Association National Joint Replacement Registry—NDI linkages (EO2019/3/1058)

Applicant: South Australian Health and Medical Research Institute (SAHMRI)
Approval valid until: 31/12/2029

The Australian Orthopaedic Association National Joint Replacement Registry (AOANJRR) compiles data about all joint replacement surgeries in Australia.

This study extends the linkage work undertaken in a past project: EC2012/2/24 in which data from the AOANJRR was linked to the National Death Index (NDI).

Data will be linked to the NDI to obtain important mortality data about deceased patients.

Study findings will enable researchers to periodically update the AOANJRR with important mortality data. Researchers can use findings to monitor survival outcomes of all individuals who underwent joint replacement surgery in Australia. Healthcare professionals can use these findings to develop care and management initiatives to maximise quality of life among individuals who undergo a joint replacement.

Evaluation of embedding a primary care nurse in a transitional support service (EO2019/3/1060)

Applicant: University of Melbourne
Approval valid until: 31 December 2024

Individuals transitioning from correctional facilities to the community are at risk of adverse health outcomes such as substance dependence, chronic medical conditions and, in severe cases, mortality. To maximise health outcomes, effective post-release primary care is essential.

ReConnect, a primary care service in Victoria, delivers intensive post-release services to at-risk individuals such as Aboriginal and Torres Strait Islander people, women, and those who have committed serious violent or sexual offences.

This study examines health outcomes, particularly mortality, among individuals transitioning from correctional facilities to the community. The study cohort will consist of existing ReConnect clients.

Data will be linked to the National Death Index.

Linked data will contribute to enhancing ReConnect services and improving outcomes for individuals transitioning from correctional facilities to the community.

Australian and New Zealand Hip Fracture Registry (EO2019/3/1065)

Applicant: Neuroscience Research Australia
Approval valid until: 31 December 2024

The Australian and New Zealand Hip Fracture Registry (ANZHFR) was established to optimise health outcomes for hip fracture patients. It outlines standards for care and secondary prevention.

With Australia’s ageing population and the tendency for older Australians to be over-represented in hip fracture prevalence rates, the ANZHFR is crucial to enabling healthcare professionals to maximise quality of life among hip fracture patients while reducing financial demands on the healthcare system.

This study investigates survival rates among hip fracture patients by identifying deceased individuals in the ANZHFR. Mortality is a key outcome measure for hip fracture patients.

ANZHFR data will be linked to the National Death Index (NDI) to identify deceased individuals at several follow-up periods.

Researchers will use mortality data, drawn from the NDI, to update the ANZHFR. Healthcare professionals can use the ANZHFR to guide and inform care plans designed to meet patients’ treatment needs and maximise treatment outcomes and quality of life.

Patterns of state-wide hospital utilisation and mortality among homeless patients at St Vincent’s Hospital, Melbourne Emergency Department: A 15-year retrospective cohort study (EO2019/3/1072)

Applicant: St Vincent’s Hospital Melbourne
Approval valid until: 31 July 2020

Homelessness is a prominent risk factor for adverse health outcomes, poor quality of life and reduced life expectancy. Furthermore, at St Vincent’s Hospital, Melbourne, homeless individuals have been consistently over-represented in emergency department presentations.

A primary aim of this study is to examine health outcomes among homeless patients, presenting to St Vincent’s Hospital, Melbourne. A secondary aim is to compare mortality rates between homeless patients and non-homeless patients.

The study cohort will consist of a homeless patient cohort and a comparison group. The homeless patient cohort will be drawn from emergency department presentations at St Vincent’s Hospital between 1 January 2003 and 31 December 2004. A comparison group will be drawn from the emergency department records. The study cohort will be linked to the National Death Index to obtain important mortality data about patient outcomes.

Healthcare professionals can use study findings to improve health outcomes among homeless individuals presenting to hospital emergency departments.

Treatment patterns, resource utilisation and healthcare costs among patients with advanced soft tissue sarcoma: A data linkage project using a Victorian cohort (EO2019/3/1074)

Applicant: Peter MacCallum Cancer Foundation
Approval valid until: 1 October 2021

Soft tissue sarcoma is a rare type of tumour, accounting for less than 1% of all malignancies in adults. The rarity of this tumour poses significant treatment challenges for healthcare professionals.

This study investigates healthcare use among patients with soft tissue sarcoma in Australia. This study also investigates the financial burdens associated with the management of this cancer.

A patient cohort will be drawn from the Australian Comprehensive Cancer Outcomes and Research Database (ACCORD). Data will be linked to the National Death Index, the Medicare Benefits Schedule, and the Pharmaceutical Benefits Scheme.

Healthcare professionals can use study findings to improve the treatment of soft tissue sarcoma, maximising quality of life.

Health service utilisation and preventable mortality in justice-involved young people (EO2019/3/1080)

Applicant: University of Melbourne
Approval valid until: 31 December 2023

Young people who have had contact with the juvenile justice system are vulnerable group in the population. They have been over-represented in prevalence rates for mental illness, substance abuse, and risk-taking behaviour.

Young people are particularly at risk of these health and behavioural concerns following release into the community from juvenile correctional facilities.

To address these health and behavioural concerns, this study examines health service use and mortality among young people, across Australia, who have been exposed to the juvenile justice system. This study also attempts to establish an evidence base to inform initiatives that may alter adverse trajectories and reduce the risks of morbidity and mortality.

The study cohort will consist of all individuals in the AIHW Juvenile Justice National Minimum Dataset (JJNMD) from 2000 to 2019. A comparison group, matched to the JJNMD cohort, will be drawn from the Medicare Enrolment File.

The study cohort and the comparison group will be linked to the National Death Index, the Medicare Benefits Schedule, and the Pharmaceutical Benefits Scheme.

Healthcare professionals can use study findings to reduce the risks of mental illness, substance abuse and risk-taking behaviour among young people who have contact with the juvenile justice system.

International Study of Comparative Health Effectiveness with Medical and Invasive Approaches (ISCHEMIA) (EO2019/3/1090)

Applicant: Flinders Medical Centre
Approval valid until: 31 December 2025

The International Study of Comparative Health Effectiveness with Medical and Invasive Approaches (ISCHEMIA) is an international, randomised study which aims to identify the most optimal approach to managing patients with ischaemic heart disease and those with advanced chronic kidney disease.

This study examines mortality outcomes, over time, among a small subset of the ISCHEMIA cohort.

Data will be linked to the National Death Index.

Study findings will enable ISCHEMIA investigators to monitor health outcomes over time.

Evaluation of four Community Pharmacy Programs funded under the Sixth Community Pharmacy Agreement-Waiver of Consent for Evaluation (EO2019/4/1059)

Applicant: HealthConsult
Approval valid until: 30 April 2020

The Sixth Community Pharmacy Agreement (6CPA) was developed to improve the accessibility of pharmaceutical services across Australia while enhancing patient care and health outcomes.

A previous investigation (project: EO2019/1/507) assessed the effectiveness of four community pharmacy programs, funded under the 6CPA, according to medication adherence, healthcare use, and cost effectiveness.

This study extends the previous investigation by using a larger study cohort.

The study cohort will consist of individuals drawn from the 6CPA Program. The study will also include a control group.

Data will be linked to the National Death Index, the Medicare Benefits Schedule, and the Pharmaceutical Benefits Scheme.

Study findings will inform initiatives designed to improve the accessibility of pharmacy services in the community.

Prudent advice on dementia risk management and prevention in Australia—translating best evidence, using The 45 and Up Study cohort data (EO2019/4/1062)

Applicant: The Sax Institute
Approval valid until: 1 October 2020

In line with Australia’s ageing population, dementia has emerged as a major burden of disease and a leading cause of death.

A number of risk factors have been linked to dementia, many of which are modifiable lifestyle factors, such as educational attainment, health complaints during midlife (e.g. hypertension, obesity, diabetes), and late-life (e.g. physical inactivity, social isolation, depression).

This study will draw participants from The 45 and Up Study cohort to identify modifiable risk factors for participants who are receiving treatment for dementia (or who received such treatment).

Data will be linked to the National Death Index, the Australian Cancer Database, the National Aged Care Data Clearinghouse, the Medicare Benefits Schedule, and the Pharmaceutical Benefits Scheme.

Healthcare providers can use study findings to improve the treatment of dementia.

Australian Longitudinal Study of Heroin Dependence: An 18–20-year prospective cohort study of mortality, abstinence, psychiatric and physical health comorbidity (EO2019/4/1073)

Applicant: University of Sydney
Approval valid until: 1 January 2027

In response to the high prevalence of heroin dependence and its significant burden of disease in Australia, the Australian Treatment Outcome Study (ATOS) was implemented. The ATOS is Australia’s largest and longest longitudinal study of heroin dependence.

The ATOS first recruited study participants, in 2001, from 19 treatment facilities. At the time of recruitment, participants were either receiving pharmacotherapy, undertaking treatment at residential communities, or detoxification.

This study is a follow-up of the original ATOS study cohort. It will investigate patterns and predictors of heroin use. This study will also examine long-term outcomes such as remission rates, physical and psychiatric health, health service use, criminal involvement, and mortality rates.

An ATOS cohort will be linked to the National Death Index, the Medicare Benefits Schedule, and the Pharmaceutical Benefits Scheme.

Healthcare providers can use study findings to improve the treatment of heroin dependence.

Antecedents for Renal Disease in Aboriginal Children and Young Adults (ARDAC) Study (EO2019/4/1084)

Applicant: Westmead Children’s Hospital and Flinders University
Approval valid until: 31 December 2025

Aboriginal and Torres Strait Islander people have displayed a higher incidence of end-stage kidney disease compared to non-Aboriginal and Torres Strait Islander people. Furthermore, mortality rates stemming from end-stage kidney disease are also higher among Indigenous Australians.

In response to these discrepancies, the ARDAC study—a prospective, longitudinal investigation—was developed to examine risk factors for end-stage kidney disease among Indigenous and non-Indigenous individuals. Study participants were primary school children, aged between six and twelve years, from urban, rural and remote regions of New South Wales.

This study investigates the prevalence of end-stage kidney disease, diabetes, and cardiovascular disease in the ARDAC study cohort. This study also examines risk factors for chronic kidney disease and its long-term health effects.

A study cohort consisting of Indigenous ARDAC study participants and non-Indigenous controls will be linked to the following datasets: the National Death Index; the Medicare Enrolment File; The Medicare Benefits Schedule; the Pharmaceutical Benefits Scheme; the National Diabetes Services Scheme; and the Australian and New Zealand Dialysis and Transplant Register.

Study findings will contribute to an evidence base that healthcare policymakers and healthcare providers can use to develop sustainable and culturally sensitive treatments for end-stage kidney disease among Indigenous Australians. Furthermore, it is envisaged that findings will reduce the gap between Indigenous and non-Indigenous Australians in the incidence of end-stage kidney disease.

The Personality and Total Health (PATH) Through Life Project (EO2019/4/1098)

Applicant: University of New South Wales and the Australian National University
Approval valid until: 31 December 2023

The Personality and Total Health (PATH) Through Life Project is a longitudinal cohort study of young, middle-aged and older adults in the Australian Capital Territory and surrounding areas of New South Wales.

The PATH Through Life Project has investigated trajectories of depression, anxiety, substance abuse, and cognitive decline. It has also examined risk and protective factors, including relationships between depression, anxiety, substance abuse and cognitive decline.

This study is an extension of a previous linkage project: EC2008/4/30.

It will examine survival outcomes among PATH Through Life study participants. Data will be linked to the National Death Index.

Study findings will contribute to an evidence base that healthcare providers can use to identify risk and protective factors for mortality.

Intergenerational Health in the Northern Territory (I–HINT) (EO2019/4/1100)

Applicant: Menzies School of Health Research (NT)
Approval valid until: 31 December 2022

This study examines cardiovascular outcomes among babies born in the Northern Territory, between 1986 and 2016, and their mothers.

Specific study objectives include:

• investigate trends in birthweight and diabetes in pregnancy for Aboriginal and Torres Strait Islander babies and non-Indigenous babies
• examine associations of diabetes in pregnancy with obstetric and neonatal outcomes
• investigate associations of birthweight and diabetes in pregnancy with long-term cardiovascular outcomes in mothers and their babies.

Data will be linked to the National Death Index.

Healthcare providers can use study findings to improve cardiovascular health in the Northern Territory.

The Better Cardiac Care Collaborative Data Linkage Project for New South Wales and the Australian Capital Territory (EO2019/4/1106)

Applicant: NSW Ministry of Health
Approval valid until: 5 May 2023

Aboriginal and Torres Strait Islander people, compared with non-Indigenous Australians, display higher rates of cardiovascular disease.

This study examines disparity in incidence rates of cardiovascular disease between Indigenous and non-Indigenous individuals. It is an extension of an earlier linkage project (EO2015/2/155).

The study population will consist of adults who were treated for cardiovascular disease in New South Wales or the Australian Capital Territory.

Data will be linked to the National Death Index, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme.

Policymakers and healthcare providers can use study findings to deliver improvements in health service delivery, equity of access and quality and safety of patient care for Aboriginal and Torres Strait Islander people, and other population groups with cardiac conditions.

Data linkage to determine long-term survival following adult and paediatric admissions to the ICU (EO2019/5/1051)

Applicant: Australian and New Zealand Intensive Care Society
Approval valid until: 31 December 2025

This study investigates predictors of long-term survival among patients admitted to Intensive Care Units (ICUs).

The study cohort will consist of adult and children ICU patients in Australia and New Zealand.

Data will be linked to the National Death Index.

Healthcare providers can use study findings to improve long-term outcomes among ICU patients.

Cancer Risk aftEr medicAlly assisTed rEproduction (The CREATE Project) (EO2019/5/1061)

Applicant: University of New South Wales
Approval valid until: 31 December 2022

Assisted Reproductive Technologies (e.g. in-vitro fertilisation, intrauterine insemination, and ovulation-induction hormonal medications) have enabled many individuals to have children.

Currently, the second highest rates of assisted reproductive technology occur in Australia, with almost four per cent of Australian children conceived using this technology.

Despite this high level of use, assisted reproductive technologies have been linked to cancer in women and their children.

This study investigates whether assisted reproductive technologies increase the risk of cancer in women and their children.

The study cohort will consist of women who received assisted reproductive technologies and women who did not receive this medical assistance. The cohort will also consist of children conceived through assisted reproductive technologies and those conceived naturally.

Data will be linked to the Medicare Enrolment File, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme. Data will also be linked to the National Death Index and the Australian Cancer Database.

Healthcare providers can use study findings to enhance health outcomes in women and their children following the use of assisted reproductive technologies.

Investigating retrospective SUDEP at epilepsy centres: A case-control study in three NSW hospitals (EO2019/5/1063)

Applicant: Westmead Hospital
Approval valid until: 1 February 2023

This study investigates risk factors and potential biomarkers for Sudden Unexpected Death in Epilepsy (SUDEP).

Data will be linked to the National Death Index.

Clinicians can use study findings to assist in identifying patients who may be at increased risk of SUDEP, enabling early intervention.

What is the impact of the National Bowel Cancer Screening Program on colorectal cancer outcomes for people over the age of 50 with severe mental illness? (EO2019/5/1108)

Applicant: University of Queensland
Approval valid until: 31 December 2022

This study examines the effect of the National Bowel Cancer Screening Program on colorectal cancer screening participation, treatment use, and survival outcomes among individuals with severe mental illness.

Historically, severe mental illness has been a risk factor for poor screening participation, reduced treatment use, and mortality.

A key aim of this study is to compare bowel cancer screening participation between patients with severe mental illness and those without severe mental illness.

National Bowel Cancer Screening data will be linked to the National Death Index, the Australian Cancer Database, the Medicare Enrolments File, the Medicare Benefits Schedule, and the Pharmaceutical Benefits Scheme.

Healthcare providers can use study findings to improve the management of colorectal cancer, particularly among patients with severe mental illness.

Royal Commission into Victoria’s Mental Health System (EO2019/5/1119)

Applicant: Royal Commission into Victoria’s Mental Health System
Approval valid until: 31 October 2020

This study will be undertaken as part of the Royal Commission into Victoria’s Mental Health System.

Specifically, this study examines the following areas:

• the extent to which individuals with mental illness use mental health services and/or medication
• the extent to which individuals with mental illness use other support services
• the characteristics of individuals who use mental health services and/or medication and those who do not.

The study cohort will consist of individuals who accessed a mental health service in Victoria.

Data will be linked to the National Death Index, the MBS, and the PBS.

Study findings will assist the Commission to investigate how well the Victorian Mental Health system is responding to the needs of the community while identifying opportunities for improvement.

Mortality among mothers and their offspring in the Mater–University of Queensland Study of Pregnancy (MUSP): Data linkage with the National Death Index (NDI) (EO2019/5/1122)

Applicant: University of Queensland
Approval valid until: 1 November 2022

The Mater–University of Queensland Study of Pregnancy (MUSP), starting in 1981, was originally a prospective study of pregnant women, with data first collected after an initial antenatal examination. Study investigators have since expanded the study scope to collect data about mothers and their children.

The MUSP is one of a few longitudinal studies, worldwide, which has examined health trajectories in mothers and their children.

This study examines survival outcomes, including mortality risk factors (e.g. mental illness and substance abuse) and mortality protective factors (e.g. physical activity and healthy lifestyle).

MUSP data will be linked to the National Death Index.

Healthcare providers can use study findings to enhance survival outcomes among pregnant women and their offspring.

The National Integrated Health Services Information (NIHSI) Analysis Asset (AA) (EO 2018/1/438)

Applicant: Australian Institute of Health and Welfare (AIHW)
Approval valid until: Ongoing approval

AIHW is working with the Commonwealth Department of Health and state and territory health authorities to create the National Integrated Health Services Information (NIHSI) Analysis Asset (AA). The NIHSI AA will contain de-identified data from 2010–11 onwards on admitted patient care services (in public and private hospitals where available), emergency department services and outpatient services in public hospitals for all participating states and territories, along with Medicare Benefits Schedule data, Pharmaceutical Benefits Scheme and Repatriation Pharmaceutical Benefits Scheme data, Residential Aged Care data and National Deaths Index data. The incorporation of data into the NIHSI AA will be staged and will be dependent on timing of receipt of the required data.

These de-identified data will initially be available to selected analysts nominated by the data providers – state and territory health authorities, the Australian Government Department of Health and the AIHW in the mid-to-second half of 2020. Sometime after that, other users will be able to apply for access to the NIHSI AA, or to data extracted from the NIHSI AA, provided their proposed use of the data complies with the AIHW Ethics Committee–approved purposes for the NIHSI AA. They are:

• patterns of use and effectiveness of health and residential aged care services;
• quality and safety of services provided;
• health risks for particular patient cohorts;
• chronic disease management — patterns of service provision;
• validation of the current treatment pathways for chronic disease management and care;
• defining patient journeys and assessing efficiency and effectiveness of the health and residential aged care systems;
• safety and quality of hospital and other services, such as residential aged care services;
• accessibility and effectiveness of services contributing to the management of chronic conditions; and
• policies and programs designed to reduce the incidence and severity of disease and injury.

Prevention of Serious Adverse Events Following Angiography (PRESERVE) (EO2018/1/416)

Applicant: The George Institute for Global Health
Approval valid until: 1 April 2023

Patients who undergo a coronary angiograph are at risk of developing Contrast-Induced Acute Kidney Injury (CIAKI). On average, 76,000 coronary angiographs are performed each year in Australia, and in approximately 25 per cent of patients, CIAKI is predicted to develop, leading to ongoing dialysis and, in severe cases, mortality.

To reduce the risk of CIAKI in patients receiving coronary angiography, and to establish an evidence-base for the effectiveness of interventions, researchers at the George Institute developed the PRESERVE (Prevention of Serious Adverse Events Following Angiography) study. This is a double-blind, randomised controlled trial designed to investigate the effectiveness of several treatments—bicarbonate compared to saline and N–Acetylcysteine (NAC) compared to placebo—in reducing the risk of CIAKI. Study outcome measures will include survival rates, kidney functioning, frequency of dialysis, rates of hospitalisation, and cardiovascular events.

This project examines survival outcomes in 311 patients recruited to the PRESERVE cohort. Data will be linked to the National Death Index (NDI) to obtain data about any deceased patients.

The PRESERVE study findings will guide and inform an evidence-base which healthcare providers can use to develop and implement interventions designed to reduce the risk of CIAKI, and its adverse effects, in patients who undergo a coronary angiograph.

Evaluating healthy ageing in Australia (EO2018/1/148)

Applicant: South Australian Health and Medical Research Institute (SAHMRI)
Approval valid until: 01 January 2021

In response to Australia’s ageing population and the demands it places on the healthcare system, this study examines the use of health and aged care services between 2002 and 2016 and the characteristics of individuals using these services. The study will investigate risk factors for adverse health events and mortality; and assess and identify successful areas and areas in need of improvement in aged care health service delivery.

A study cohort drawn from the National Aged Care Data Clearinghouse will be linked to the National Death Index, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme. The cohort will contain approximately one-million individuals, aged 65 years and over, who have received aged care services (e.g., residential aged care; aged and transition care packages; and home and community care support).

Ten specific research questions have been proposed:

1. Who are the recipients of aged care services? We will define aged care clients per their demographics, geographic location, socioeconomic status, general health status, social support, psychosocial profile, and specific important determinants of health for this population (e.g. home safety status, risk of vulnerability, cognitive impairment, functional capacity, and depression). How have the recipients changed over the study period (2002-2016)?
2. What changes in aged care services have occurred during the study period and how they have affected ageing in Australia?
3. What are the factors associated with specific aged care services (e.g. type of service, level of service, specific therapies) provided and subgroups of aged care recipients?
4. How do the aged care clients’ characteristics affect the types of services provided to them and access to these services?
5. What are the factors associated with progression from one type of aged care service/package type to the next (e.g. determinants of clients change from aged care package program to transition care program, to residential aged care)?
6. What are the factors associated with mortality and/or other health events (e.g. falls, pain, fractures, health services utilisation) in aged care seekers/recipient?
7. What are the successful areas and areas in need of improvement in the delivery of health services for aged care?
8. What are the existing evidence-based health promotion strategies and guidelines in the delivery of aged care services?
9. What are the factors associated with successful industry innovations/opportunities that can benefit older Australians?
10. What are the opportunities to deliver cost-effective services to aged care recipients?

The results of the study will guide and inform policies and initiatives to enhance the quality of life and wellbeing of older Australians.

The project will also support the development of the Registry of Older South Australians (ROSA) providing information on the historical utilisation rates of health and aged care services within the ROSA population.

Using linked data to evaluate and improve hip fracture care (EO2018/1/401)

Applicant: Neuroscience Research Australia
Approval valid until: 15 January 2020

Hip fractures—particularly in older people who display a significantly higher risk of sustaining these injuries—have been linked to marked physical and psychological impairment. Furthermore, due to the complexity of hip fractures and the subsequent need for extensive surgical intervention, these injuries have placed substantial demands on the healthcare system. With an ageing population, rates of hip fractures will only increase.

There is therefore a need to establish an evidence-base for the management of hip fracture patients to enhance physical and psychological functioning, reducing the burden on the healthcare system.

This study examines healthcare trajectories and long-term outcomes following a hip fracture in older patients.

The study cohort consists of approximately 42,000 patients, aged 50 years and older, who sustained a fall-related hip fracture and who were admitted to a NSW hospital between 1 January 2010 and 31 December 2016.

This patient cohort will be linked to the following Commonwealth datasets:

• National Death Index
• Pharmaceutical Benefits Scheme
• National Aged Care Data Clearinghouse
• Australasian Rehabilitation Outcomes Centre Database.

Study findings will contribute to a much-needed evidence-base about healthcare pathways (and their effectiveness) in older patients who sustain hip fractures. Healthcare providers will use this evidence-base to improve the management of hip fracture patients, enhancing quality of life.

First seizure assessment and management (EO2018/1/425)

Applicant: Alfred Health
Approval valid until: 31 December 2020

This study will investigate patterns of first seizure management and whether delayed assessments are associated with poor patient outcomes and high treatment costs.

The Centre for Victorian Data Linkage will prepare a study cohort consisting of approximately 5,000 patients, aged 18 years and over, who had a first seizure and who presented to a Melbourne hospital between January 2008 and December 2017. Data will be linked to the National Death Index and the Pharmaceutical Benefits Scheme.

Study findings will contribute to the development of the First Seizure Assessment and Management Algorithm—an evidence-based model that will enable healthcare professionals to assess and treat first seizure patients in a timely manner.

Surveillance of disease outcomes and management of people diagnosed with hepatitis B or hepatitis C virus infection in Western Australia: A population-based linkage study (EO2018/2/374)

Applicant: WA Department of Health
Approval valid until: 30 June 2021

In Australia, hepatitis B (HBV) and/or hepatitis C (HCV) are prominent burdens of disease, associated with poor health outcomes and, in severe cases, mortality. Fortunately, effective treatments exist.

This study will monitor HBV and/or HCV rates and survival outcomes in Western Australia. The study cohort will consist of all individuals who had a HBV and/or HCV notification in the state between 1990 and 2016.

Data will be linked to the National Death Index, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme.

Findings will assist healthcare practitioners to evaluate the effectiveness of existing treatments for HBV and/or HCV infections.

Veterans’ Medicines Advice and Therapeutics Education Services (Veterans’ MATES) (EO2018/2/385)

Applicant: University of South Australia
Approval valid until: 31 August 2021

The Veterans’ Medicines Advice and Therapeutics Education Services (Veterans’ MATES), a program funded by the Department of Veterans’ Affairs, designed to maintain the health and wellbeing of veterans, has been running since 1998. This program provides health education to veterans and advice to their healthcare providers.

This study will investigate survival outcomes among individuals in the Veterans’ MATES program. Data will be linked to the National Death Index.

Findings will assist healthcare practitioners to maintain the health and wellbeing of veterans.

Registry of Older South Australians: Measuring and Intervening for Healthy Ageing (EO2018/2/429)

Applicant: South Australian Health and Medical Research Institute (SAHMRI)
Approval valid until: 31 December 2023

Australia’s population continues to age, placing increasing demands on the health and aged-care sectors. It is therefore important to ensure that aged-care services are provided in an efficient and cost-effective manner.

This study will establish the Registry of Older South Australians (ROSA)—a data collection to monitor the health and wellbeing; service utilisation; medication use; and mortality of older South Australians.

This study has received substantial funding from the South Australian Premier’s Research and Industry Fund, and builds on the Evaluating Healthy Ageing in Australia project (EO2018/1/418).

The study cohort will consist of approximately 16,000 individuals who received (or are receiving) an aged care assessment in South Australia. These individuals will be drawn from the National Aged Care Data Clearinghouse.

The study cohort will be linked to the National Death Index, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme. Data will also be accessed from several South Australian health administrative datasets.

Study findings will identify various pathways through which individuals access services in the aged-care and healthcare sectors. Healthcare policymakers can use this information to guide decisions about the provision of healthcare services to older individuals.

Sex disparities in management of myocardial infarction and other cardiovascular diseases (EO2018/2/431)

Applicant: University of New South Wales
Approval valid until: 1 July 2022

This study, funded by the National Health and Medical Research Council, and undertaken by The George Institute and the Centre for Big Data Research in Health at the University of NSW, investigates disparities in treatment and health outcomes among patients with myocardial infarction and other cardiovascular diseases, and whether demographic variables (e.g. age, sex, religion, socio-economic and indigenous status) account for these disparities.

The study cohort consists of approximately 100,000 men and women admitted to a NSW hospital with a cardiovascular event/myocardial infarction or who have a NSW Ambulance record related to those conditions.

Data will be linked to the National Death Index, the Medicare Benefits Schedule, and the Pharmaceutical Benefits Scheme.

Study findings will inform healthcare pathways by identifying modifiable factors that account for disparities in treatment and health outcomes across cardiovascular disease patients.

Australian Heart Eye Study (EO2018/2/435)

Applicant: Westmead Institute of Medical Research
Approval valid until: 1 May 2021

This study will examine whether retinal microvascular signs are associated with poor prognoses in patients with coronary heart disease (CHD). This study will also investigate survival outcomes.

The study cohort will consist of 1,680 CHD patients.

Data will be linked to the National Death Index.

Study findings will enable healthcare practitioners to identify CHD patients at risk of poor prognoses.

Economic impacts of antimicrobial resistance in Australia (EO2018/2/441)

Applicant: Griffith University
Approval valid until: 31 July 2020

Infections arising from Antimicrobial Resistance (AMR) have been linked to rising rates of morbidity; lengthy hospital stays; increased health expenditure; and, in severe cases, mortality. This study, commissioned by the Commonwealth Department of Health, will use a case-controlled design to examine AMR; its burden of disease; and its clinical and economic impact.

The study will comprise two groups of patients with AMR drawn respectively from state and territory hospital data, and the Pharmaceutical Benefits Scheme plus two comparative control groups consisting of people with drug-susceptible (non-resistant) microbial infections. The first round of linkage will involve Queensland and Northern Territory hospital data.

These data will be linked to the National Death Index, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme.

Study findings will provide information about the prevalence of AMR infections; the duration and course of AMR infections; and the economic and clinical impacts of AMR infections. This information will inform healthcare policy, health expenditure and resource allocation. Healthcare practitioners can also use this information to inform best practice treatment models.

PROBE–NET: The PROgression of Barrett’s Esophagus to cancer NETwork (EO2018/2/442)

Applicant: QIMR Berghofer Medical Research Institute
Approval valid until: 31 December 2024

Barrett’s Oesophagus, a chronic medical condition, can be a precursor to oesophageal cancer.

The PROBE–NET (PROgression of Barrett’s Esophagus to cancer NETwork) is a multi-centre consortium devoted to the study of Barrett’s Oesophagus and oesophageal cancer. A key aim of PROBE–NET is to quantify the overall and cause-specific risks of progression to cancer and mortality in patients with Barrett’s Oesophagus.

A study cohort containing 700 patients undergoing upper-gastrointestinal endoscopy will be linked to the National Death Index.

Study findings will enable healthcare practitioners to improve the treatment of patients with Barrett’s Oesophagus, delaying (and ideally preventing) the onset of oesophageal cancer.

Evaluation of enhanced models of primary care in the management of stroke and other chronic disease (PRECISE) (EO2018/2/449)

Applicant: Monash University
Approval valid until: 31 December 2022

This study will examine the effect of primary healthcare models on rates of hospitalisations and emergency department presentations among stroke patients.

The study cohort will consist of approximately 25,000 patients who were hospitalised between January 2012 and December 2016. Patients will be drawn from the Australian Stroke Clinical Quality Registry (AuSCR).

Data will be linked to the Medicare Benefits Schedule, the Pharmaceutical Benefits Scheme and the National Aged Care Data Clearinghouse.

Study findings will inform improvements to existing primary healthcare models, enhancing quality of life for stroke survivors.

AusDiab3: Emerging risk factors for and long-term incidence of cardiometabolic diseases (EO2018/2/453)

Applicant: Baker Heart and Diabetes Institute
Approval valid until: 31 December 2024

The Australian Diabetes, Obesity and Lifestyle (AusDiab) study is the largest prospective study in Australia to examine the natural history of diabetes and its complications. The AusDiab commenced in 1999–2000 and has followed up participants in 2004–05 and 2011–12.

This study is an extension of a previous project (EC358), in which the AusDiab cohort was linked to the National Death Index (NDI) to investigate survival outcomes. In this study, data will be linked to the NDI, annually, over five years.

Study findings will continue to inform diabetes healthcare policy. Healthcare practitioners will continue to use AusDiab data to inform evidence-based treatment models.  

Long-term Influence of Fertility Treatment on Cardiovascular Events—The LIFE study (EO2018/2/447)

Applicant: Baker Heart and Diabetes Institute
Approval valid until: 1 May 2021

In recent years, reproductive technologies—particularly fertility treatments—have seen widespread use. However, some fertility treatments have emerged as risk factors for cardiovascular events.

The Long-term Influence of Fertility Treatment on Cardiovascular Events (LIFE) study investigates whether fertility treatments are risk factors for cardiovascular events.

A cohort of women (approximately 42,000) who received fertility treatment between 1978 and 2017 will be linked to the National Death Index.

Healthcare practitioners will use study findings to help reduce the risk of cardiovascular events in women receiving fertility treatment.

Suicide risk following intensive care admission with self-harm (EO2018/2/457)

Applicant: St Vincent’s Hospital Melbourne
Approval valid until: 21 May 2020

This study investigates whether self-harming patients admitted to an intensive care unit are at a greater risk of suicide, compared to those admitted to wards and those discharged from an emergency department.

A study cohort of approximately 400,000 patients will be linked to the National Death Index.

Study findings will identify treatment pathways and inform treatment protocols for self-harming patients.

Department of Social Services—Outcomes Payment Framework for Social Impact Investing—Specialist Homelessness Services and DOMINO (EO2018/2/464)

Applicant: Department of Social Services
Approval valid until: 1 December 2025

This study examines government welfare use among homeless young people. It will support a 2017–18 Commonwealth Government initiative to reduce homelessness among young people.

The study cohort consists of individuals born in 1981 or later who appear in DOMINO (Data Over Multiple Individual Occurrences, a Department of Social Services income support data collection), between 2001 and 2017 and/or the Specialist Homelessness Services Collection (SHSC), an AIHW data collection, between 2011–12 and 2016–17.

DOMINO income support data will be linked to the SHSC.

Study findings will provide an evidence-base designed to improve housing and welfare outcomes for young people who are homeless or at risk of homelessness.

STaR–Link: National Collection of Cancer Data on Stage, Treatment and Recurrence (STaR)—Phase 2 data linkage (EO2018/3/455)

Applicant: Cancer Australia
Approval valid until: 1 February 2022

This study, undertaken in collaboration with state and territory cancer registries, examines variations in cancer stage and treatment pathways across population sub-groups and geographical locations, one year after diagnosis. It also investigates five-year survival outcomes.

A study cohort of approximately 70,000 individuals diagnosed with a top-five incidence cancer (breast, colorectal, lung, melanoma and prostate) between January and December 2011 will be linked to state and territory Admitted Patient Data Collections; the National Death Index; the Medicare Benefits Schedule; and the Pharmaceutical Benefits Scheme.

Study findings will contribute to an evidence-base designed to improve cancer patients’ survival and outcomes.

ACT and SE NSW Breast Cancer Treatment Group Quality Assurance Project (EO2018/3/467)

Applicant: ACT Health
Approval valid until: 30 June 2020

The ACT and SE NSW Breast Cancer Treatment Group Quality Assurance Project, a cohort study of breast cancer including its management and treatment outcomes, commenced in 1997 following the publication of the NHMRC Guidelines for the Management of Early Breast Cancer.

This project has examined disease and treatment parameters and survival outcomes. Healthcare practitioners have used the findings to improve clinical pathways. Findings also have informed the content of various educational and training programs.

This study has the following objectives:

• to examine the causes of outcomes for individuals diagnosed with breast cancer, with particular reference to care received compared with existing treatment guidelines
• to assess overall and disease-specific survival outcomes
• to understand gaps in routine care
• to improve outcomes of care for individuals diagnosed with breast cancer and, in turn, reduce the number of deaths from breast cancer.

The study cohort will consist of 6,300 individuals, and will be linked to the National Death Index.

Study findings will enable healthcare practitioners to identify both risk and protective factors for cancer-related mortality compared to other cause-related mortality, and to establish possible explanations for individual differences in breast cancer survival and thus to enhance survival and maximise quality of life.

Pathways into homelessness, on behalf of NSW Department of Family and Community Services (EO2018/3/476)

Applicant: NSW Department of Family and Community Services
Approval valid until: 30 June 2020

The NSW Department of Family and Community Services has contracted Taylor Fry, an analytics and actuarial consultant, to undertake this study. It investigates patterns of support service use as a potential risk factor for homelessness.

NSW Government services data will be linked to the AIHW Specialist Homelessness Services Collection. A control group will be created from the Medicare Enrolment File.

Study findings will inform an evidence base designed to identify individuals at risk of homelessness while facilitating early intervention.

The impact of guideline-recommended medicines after hip fracture, ischaemic stroke, myocardial infarction and diabetes complication on rehospitalisation and mortality in people with and without dementia (EO2018/4/468)

Applicant: Monash University
Approval valid until: 6 January 2021 

Dementia is highly prevalent in older adults. Prevalence rates are likely increase significantly as Australia’s ageing population continues to rise.

Studies of prescription patterns in older patients with dementia, who have been hospitalised for various conditions such as hip fractures, ischaemic stroke, myocardial infarction and diabetes have found lower prescription medication rates than those without dementia. This discrepancy may be due to the cognitive impairment, observed in patients with dementia, adversely affecting compliance with medication regimens.  

This study further investigates prescribing rates in older patients with dementia. It also investigates the effect of discharge medication regimens on health and wellbeing among patients with and without dementia.

The study cohort consists of patients who discharged from public hospitals in Victoria, between 1 July 2012 and 31 December 2017, having previously presented with hip fractures, ischaemic stroke, myocardial infarction and diabetes.

Data will be linked to the National Death Index, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme.

Study investigators will use the findings to develop prescription guidelines for dementia patients, following discharge from hospital.

The Health in Men Study (HIMS)—A linkage to MBS and PBS data (EO2018/4/472)

Applicant: University of Western Australia
Approval valid until: 1 May 2021

The Health in Men Study (HIMS) is a longitudinal study of the health and well-being of men aged between 65 and 84 in Western Australia. A total of 12,203 men were originally recruited at baseline in 1996. Since then, there have been six waves of follow-up.

Under a previous study (EO2016-2-250), HIMS data were linked to several Western Australian health datasets and aged care data.

Study investigators wish to examine mortality rates and the extent and costs of health service utilisation among individuals in the HIMS cohort.

The study cohort consists of 12,203 men recruited to the HIMS in 1996. Data will be linked to the National Death Index, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme.

Potentially preventable medication-related hospitalisations in First Australians (EO2018/4/486)

Applicant: Griffith University
Approval valid until:  2 September 2020

This study examines the rates and costs of potentially preventable medication-related hospitalisations among Aboriginal and Torres Strait Islanders in Queensland.

The study cohort will consist of Aboriginal and Torres Strait Islander patients admitted to a Queensland hospital between 1 January 2013 and 31 December 2017.

Data will be linked to the National Death Index, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme.

Study investigators will use the findings to establish an Indigenous-specific medication review service, designed to reduce rates of potentially preventable medication-related hospitalisations.

Linkage of the Australian Cystic Fibrosis Data Registry with the National Death Index (EO2018/4/495)

Applicant: Monash University
Approval valid until: 25 October 2025

This study investigates mortality rates associated with cystic fibrosis—a highly debilitating genetic condition, affecting the lungs and the digestive system.

A study cohort will be drawn from the Australian Cystic Fibrosis Registry (ACFDR), a collection compiling diagnostic, clinical and outcome data about cystic fibrosis patients from 23 participating sites in Australia. The ACFDR has collected data, annually, since 1998.

Data will be linked to the National Death Index to update mortality data for individuals in the ACFDR, who have died since 1998.

Study findings will also assist investigators to identify risk and protective factors for mortality in cystic fibrosis patients.

IBIS–I: A multicentre trial of tamoxifen to prevent breast cancer (long-term follow up) (EO2018/4/496)

Applicant: Breast Cancer Trials
Approval valid until: 1 June 2033

The International Breast Cancer Intervention Study–I (IBIS–I) was a double-blind, randomised, controlled trial investigating the effectiveness of oral tamoxifen in the prevention of breast cancer. The IBIS–I was also a multi-national project, drawing women aged between 35 and 70 years, who were at a high risk of developing breast cancer. The trial started in 1992, with recruitment completed in 2001, and a total of 7,154 women participated.

A total of 2,514 women participated in the Australian tranche. During both follow-up assessments, study investigators found that tamoxifen was effective in reducing breast cancer incidence rates, compared to that of a placebo. This finding resulted in the inclusion of tamoxifen on the Pharmaceutical Benefits Scheme.

A study cohort consisting of the 2,514 Australian women will be linked to the National Death Index and the Australian Cancer Database with follow-up linkages every three to five years. These linkages will enable study investigators to examine cancer incidence and survival outcomes, over time.

Study findings will have important implications for the prevention of breast cancer in at-risk women. For those who develop breast cancer, study findings will inform treatment and management approaches to improve survival outcomes.

Closing the gap on Indigenous cardiovascular health: Improving community outcomes through policy-relevant research (EO2018/4/498)

Applicant: University of Melbourne
Approval valid until: 14 January 2022

Cardiovascular disease is the largest contributor to the gap in health and mortality between Indigenous and non-Indigenous Australians.

This study retrospectively analyses data drawn from the MedicineInsight database—a large-scale, general practice dataset, whose data currency ranges from January 2007–January 2018.

The primary aim of this study is to examine cardiovascular risk, treatment utilisation and outcomes in Indigenous Australians. Other study aims include:

• to assess whether implementation of evidence-based cardiovascular care differs between Indigenous and non-Indigenous people
• to assess the impact of evidence-based cardiovascular care on health and economic outcomes.

A cohort of over two million adults, drawn from the MedicineInsight database will be linked to the National Death Index.

Study findings will inform cardiovascular risk management pathways, identifying how cardiovascular disease is managed across the primary and tertiary care continuum. In addition, findings will assist healthcare providers to improve the treatment of cardiovascular disease in Indigenous Australians, reducing the gap in health and mortality between Indigenous Australians and non-Indigenous Australians.

Determining the health and welfare use of New South Wales workers with long-duration workers’ compensation claims (Section 39 study) (EO2018/4/480)

Applicant: Monash University
Approval valid until 31 December 2020

In 2012, the NSW government amended existing workers’ compensation legislation by implementing a five-year limit on the duration of payments for all injured workers, except those with very serious injuries and those from specific occupational groups. Workers who reached the end of their compensation benefit period would then be eligible for welfare benefits. Prior to these changes, injured workers could receive incapacity payments until retirement age.

This study investigates patterns of healthcare and welfare use for injured workers whose compensation benefit ceased under the 2012 amendment (the Section 39 cohort). It also compares healthcare and welfare use between this cohort and two comparison groups: injured workers with shorter duration workers’ compensation claims and a community group.

Data will be linked to the Medicare Benefits Schedule, the Pharmaceutical Benefits Scheme and Centrelink data.

Findings will inform healthcare and welfare policies, maximising the quality of life of injured workers.

Defining and defeating Aboriginal and Torres Strait Islander disadvantage in breast cancer survival (EO2018/5/432)

Applicant: Fiona Stanley Hospital
Approval valid until: 31 December 2022

The incidence and mortality rate of breast cancer in Indigenous Australian women are significantly higher than in non-Indigenous Australian women. Past studies have revealed that several factors—age, remoteness and degree of access to medical services—partially explain these discrepancies. Targeting these factors has enabled healthcare professionals to reduce the gap in breast cancer incidence rates and mortality rates between Indigenous Australian women and their non-Indigenous counterparts. However, there appear to be other factors that more prominently explain these discrepancies. Identifying these additional factors would enable healthcare professionals to further reduce the gap.

This study investigates the effect of known risk factors such as age, remoteness and degree of access to medical services, including biological factors and treatment utilisation, and whether these additional factors explain differences between Indigenous and non-Indigenous women.

The study cohort will be drawn from the WA Cancer Registry and consists of Indigenous Australian women diagnosed with any form of cancer in WA from 2001 onwards and non-Indigenous women matched according to age and remoteness.

The study cohort will be linked to the Pharmaceutical Benefits Scheme to establish the nature and extent of pharmaceutical interventions utilised.

Findings will enable healthcare professionals to reduce breast cancer mortality rates in Indigenous Australian women and further reduce the gap between Indigenous Australian women and their non-Indigenous counterparts.

Atherosclerosis Secondary Prevention Study (EO2018/5/506)

Applicant: Illawarra Shoalhaven Local Health District
Approval valid until: 30 July 2021

Atherosclerosis, also known as arteriosclerotic vascular disease, is a condition in which plaque deposits build up on the inside of the artery walls resulting in narrowed and hardened blood vessels, disrupting blood flow. Atherosclerosis has been linked to serious cardiovascular complaints such as a heart attack or stroke and, in more severe cases, recurrent cardiovascular events.

Among individuals with a history of atherosclerosis, several interventions—pharmacotherapy (e.g. blood-pressure lowering medications) and lifestyle approaches (e.g. increased physical activity)—have been effective in clinical trials at preventing recurrent atherosclerotic events. Such trials have studied patients with histories of cardiovascular events, who are mostly compliant to treatment regimens, reducing the extent to which results can be generalised to those, who may have atherosclerosis but have not experienced a cardiovascular event.

This study investigates the effectiveness of secondary prevention strategies on reducing recurrent atherosclerotic events, and any subsequent cardiovascular events.

The sample will consist of adult patients who had at least one hospital admission for a secondary cardiovascular event (e.g. heart attack, stroke, lower limb ischemia), linked to atherosclerosis, between 2001 and 2016. Study investigators plan to compare health outcomes between patients who had two, or more, atherosclerotic events with a control group consisting of patients who experienced only one atherosclerotic event.

Data will be linked to the National Death Index, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme.

Healthcare professionals will be able to use study findings to reduce the likelihood of recurrent atherosclerotic and other cardiovascular events.

Linking primary, secondary and tertiary care data to build prediction models for total knee replacement in patients with osteoarthritis (EO2018/5/509)

Applicant: University of Melbourne
Approval valid until: 3 December 2023

Osteoarthritis, a degenerative and debilitative condition, affects over two million Australians. With Australia’s ageing population, this number is likely to increase significantly. Currently, total joint replacement surgery—in particular, total knee replacement—is the most frequently used treatment. The majority of patients who receive a total joint replacement generally display positive outcomes, such as enhanced mobility and better quality of life. However, in a minority of cases, adverse treatment outcomes have been observed.

This study will develop predictive models to identify osteoarthritis patients who may benefit from total knee replacement surgery and those who may be at risk of adverse outcomes.

The study cohort will consist of approximately 475,000 patients, aged 45 years and over, diagnosed with osteoarthritis prior to 2018. This cohort will be linked to the National Death Index to identify all deceased patients, enhancing the accuracy of predictive models.

Study findings will contribute to the development of predictive models, enabling better identification and treatment of osteoarthritis patients who may be at risk of adverse outcomes after a total knee replacement and those who are likely to benefit from this intervention.

Measuring the burden and trends of diabetes complications in Australia (EO2018/5/501)

Applicant: Baker Heart and Diabetes Institute
Approval valid until: 1 January 2021

This study examines the burden of decease associated with diabetes across four jurisdictions in Australia, and investigates variations in health service use and outcomes, and relationships between medication regimens and diabetes complications.

A study cohort will be drawn from the National Diabetes Service Scheme and linked to the National Death Index, the Medicare Enrolment File and the Pharmaceutical Benefits Scheme.

Healthcare practitioners will be able to use study findings to improve the treatment and management of diabetes patients, reducing the burden of disease and maximising quality of life.

Outcomes of minimally invasive mitral valve surgery: repair versus replacement (EO2018/5/510)

Applicant: Sir Charles Gairdner Hospital
Approval valid until: 31 December 2020

This study investigates post-surgical outcomes (e.g. incidence of stroke, heart attack, kidney failure, and hospital admission rates) among patients who underwent surgery to either repair or replace a mitral heart valve—also known as the bicuspid valve—the valve in the heart which regulates blood flow between the upper and lower chambers.

The study cohort consists of patients who underwent surgery either to repair or replace a mitral valve. Data will be linked to the National Death Index to establish survival rates, and to identify deceased patients who study investigators can then omit from follow-up assessment.

Study findings will contribute to an evidence base capturing post-surgical outcomes among patients who underwent surgery to repair or replace a mitral valve. This evidence base will inform the post-surgical care and management of patients, and enhance overall quality of life.

Retrospective review of rheumatic heart valve surgical outcomes in the Northern Territory between 1996 and 2016 (EO2018/5/410)

Applicant: Charles Darwin University and Menzies School of Health Research
Approval valid until: 31 December 2019

This study examines post-treatment outcomes among rheumatic heart disease patients, with the aim of establishing a surgical register.

The study cohort consists of patients who underwent surgery to treat rheumatic heart disease in the Northern Territory over the past 20 years. The cohort will be linked to the National Death Index to identify survival rates.

Study findings will facilitate the development of a surgical register, containing key information about post-surgical outcomes, including risk factors for adverse outcomes, among patients with rheumatic heart disease. This register will inform the care and treatment management of patients to maximise survival rates and quality of life.

IMPROVE – Investigating Medication re-Purposing to Reduce risk of OVarian cancer and Extend survival (EO 2016/3/276)

Applicant: QIMR Berghofer Medical Research Institute
Approval valid until: 01 February 2020

Ovarian cancer is a prominent cause of mortality, with five-year survival rates less than 50 per cent.

This study investigates whether chemo-preventive medications (e.g., beta-blockers, bisphosphonates and raloxifene) are effective in treating, and even preventing, ovarian cancer.

A specific objective is to investigate the association between chemo-preventive medication use and ovarian cancer incidence, and survival rates.

State health administrative datasets will be linked with the National Death Index, Australian Cancer Database, and the Pharmaceutical Benefits Schedule.

Study findings will inform additional investigations to establish further ovarian cancer treatments, while also identifying potential prevention strategies.

Assessing risk and predicting harms of prescribed opioids (EO 2016/4/314)

Applicant: University of New South Wales
Approval valid until: 31 December 2022

Opioid-use disorders place considerable demands on the healthcare system. Moreover, these disorders are linked to high mortality rates.

Of the available treatments, pharmaceutical interventions are most commonly used to treat opioid-use disorders.

This study investigates risk factors for adverse outcomes following prescription opioid use, and aims to identify patients at most risk of adverse outcomes.

A cohort of adult, opioid-dependent patients will be linked with the following datasets: the National Death Index, the Australian Cancer Database, the Medicare Benefits Schedule, and the Pharmaceutical Benefits Schedule. Data will also be linked with state and territory hospital and emergency datasets.

Findings will enable healthcare practitioners to identify patients at risk of adverse outcomes, following prescription opioid use, leading to better targeted interventions and a reduction in mortality rates.

Colorectal cancer – Early detection, clinical management and survival outcomes at a population level (EO 2016/4/317)

Applicant: South Australian Health and Medical Research Institute (SAHMRI)/University of South Australia
Approval valid until: 31 December 2025

Colorectal cancer prevalence continues to increase, posing a significant burden of disease. It is also a major cause of mortality.

There is a demand for ongoing research to inform procedures that enhance colorectal cancer patients’ quality of life, and survival rates.

This study will establish a linked, de-identified dataset of South Australian colorectal cancer patients. It will examine screening behaviour patterns, service use and adverse outcomes, and differences in these variables across time and socio-demographic group.

A cohort of South Australian residents diagnosed with colorectal cancer from 2003 onwards will be linked with the following Commonwealth datasets: the National Bowel Screening Register, the Medicare Benefits Schedule, and the Pharmaceutical Benefits Schedule. Data will also be linked with several South Australian health datasets.

Study findings will facilitate early detection of colorectal cancer. Healthcare practitioners can target interventions to enhance quality of life and increase survival rates.

Colorectal Cancer Database (EO 2017/1/285)

Applicant: Concord Hospital and University of Sydney
Approval valid until: 30 December 2024

Colorectal cancer is highly prevalent in Australia. It is the second, most commonly diagnosed cancer, and generally has a poor prognosis.

The Colorectal Cancer Database contains information about colorectal cancer patients treated at Concord Hospital, NSW.

Healthcare practitioners have used the database to improve their understanding of the natural history of colorectal cancer, evaluate the effectiveness of surgical options and oncological treatments, and investigate the probability of relapse.

The AIHW previously linked the colorectal cancer database with the National Death Index (NDI). In the current study, the colorectal cancer database will be linked with the NDI to update patient information. An updated database will enable healthcare professionals to enhance the management of colorectal cancer patients.

Differences in absolute and relative risks for CVD mortality among various low and high risk groups: Exploring the phenomenon (EO 2017/1/334)

Applicant: Baker IDI Heart and Diabetes Institute
Approval valid until: 01 March 2020

While much is known about cardiovascular disease risk factors, little is known about differences in the incidence and magnitude across various demographic groups.

Women have historically displayed a lower risk of cardiovascular mortality than men. This difference is due to a multitude of factors. The hypothesis of this study is that, the addition of one risk factor, in this case diabetes, among a group of people who have a lower absolute risk for cardiovascular mortality (e.g., women) will have a greater relative impact than the addition of the same risk factor among a group of people already at higher risk for cardiovascular mortality (e.g., men).

This study investigates sex differences in cardiovascular mortality rates. It will use the results of a previous project - The Australian and New Zealand Diabetes and Cancer Collaboration - where several patient cohorts were linked with the National Death Index and the Australian Cancer Database to examine relationships between obesity, diabetes, cancer incidence, and mortality.

Findings will lead to a better understanding of sex differences in cardiovascular mortality rates and have implications for improving cardiovascular mortality risk assessment. This will enable healthcare practitioners to implement early, targeted interventions to reduce mortality rates.

Exploring the Natural History of Adverse eND-points in Cardiovascular disease and co-morbid Depression (ENHANCeD) (EO 2017/1/339)

Applicant: South Australian Health and Medical Research Institute (SAHMRI)
Approval valid until: 31 December 2020

Indigenous Australians display a significantly higher incidence of cardiovascular disease than non-Indigenous Australians. There is also a discrepancy in the risk of cardiovascular-related mortality.

This study—the ENHANCeD project—will investigate the effects of depression and other psychosocial risk factors on cardiovascular disease among Indigenous Australians. Data from two studies (Men, Hearts and Minds, and Heart of the Heart) will be linked with the National Death Index to obtain important outcome measures: death status, date of death, and cause/s of death.

Findings will enable healthcare professionals to obtain a better understanding of psychosocial risk factors for cardiovascular disease among Indigenous Australians. This information will have implications for indigenous health policy development, enhancing the availability and accessibility of targeted interventions.

International Spinal Cord Injury (InSCI) Community Survey (EO 2017/1/341)

Applicant: University of Sydney
Approval valid until: 01 February 2018

The InSCI Community Survey examines factors that influence activity levels, health and well-being among spinal cord patients.

This study will utilise InSCI survey data to inform health policy to improve the development and implementation of healthcare services.

Study investigators will establish a cohort by recruiting patients from various healthcare databases, managed by state spinal cord injury units, and other sources such as spinal cord injury associations, care and support agencies, and third party insurers.

The data will be linked with the National Death Index in order to exclude deceased individuals from the study cohort.

Healthcare practitioners can use InSCI survey results to improve treatment and support services for spinal cord patients.

Mothers and their Children’s Health Study (MatCH) Phase 1 (data linkage project) (EO 2017/1/342)

Applicant: University of Queensland
Approval valid until: 31 August 2018

The family environment is critical in shaping a child’s psychosocial development. Most studies investigating child development are limited in their ability to investigate the various effects among children within each family unit because they focus on individual children.

The Mothers and their Children’s Health (MatCH) study is an extension of the Australian Longitudinal Study on Women’s Health, and builds on the current knowledge base of the impact of familial factors on psychosocial development. This study examines the contributions of maternal health and well-being and family environment characteristics towards a child’s development, and whether there is any variation in developmental outcomes across children in the same family.

MatCH study data will be linked with the Australian Early Development Census to obtain important information about children who commenced school during any of the census years: 2009, 2012 or 2015.
Findings will provide further information about the contribution of familial factors towards psychosocial developmental outcomes, informing policy and enhancing existing initiatives.

Quantifying cancer patient’s health service use and costs in Queensland (EO 2017/1/343)

Applicant: James Cook University
Approval valid until: 31 December 2020

This study examines cancer patients’ out-of-pocket expenditure on healthcare services. It also quantifies the distribution of the cost of cancer, while identifying any inequalities between demographic groups.

Specific objectives include:

1. Determine any inequalities (according to income group, Indigenous status, and geographic location) in cancer incidence
2. Quantify any inequalities (according to income group, Indigenous status, and geographic location) in healthcare use and healthcare expenditure
3. Quantify healthcare, out-of-pocket expenditure and any inequalities (according to income group, Indigenous status, and geographic location)

Another objective is to investigate relationships among health system use, health system expenditure, out-of-pocket expenditure, and clinical outcomes.

A cohort from the Queensland Cancer Registry will be linked with state hospital and emergency care datasets, the Medicare Benefits Schedule and the Pharmaceutical Benefits Schedule.

Findings will provide information about cancer patients’ expenditure on healthcare utilisation, and any demographic discrepancies. This will have implications for improving the availability and accessibility of healthcare services.

Identifying gaps and inequalities in access to General Practitioner coordinated care for survivors of stroke (EO 2017/1/346)

Applicant: Monash University
Approval valid until: 01 July 2019

Stroke survivors present unique healthcare needs. General practitioners have historically been a primary source of care, through Medicare-funded Chronic Disease Management Programs and other coordinated care models.

This project examines the care of stroke survivors under Medicare-funded programs and other models of General Practitioner coordinated care to identify inequalities in availability and accessibility of care.

Australian Stroke Clinical Registry data will be linked with the Medicare Benefits Schedule and the Pharmaceutical Benefits Schedule to obtain information about services and prescriptions related to the prevention and treatment of stroke and related conditions.

Findings will inform policy to reduce any inequalities in the availability and accessibility of interventions for stroke survivors.

A comprehensive approach to international cancer survival benchmarking (EO 2017/1/347)

Applicant: NSW Cancer Institute
Approval valid until: 30 September 2019

The International Cancer Benchmarking Project (ICBP) examined survival among breast, colorectal, lung, and ovarian cancer patients diagnosed between 1995 and 2007. The ICBP also compared survival rates between six, high-income countries.

Findings demonstrated improvements in overall survival rates. However, there were differences in survival rates across countries. Another large, international study—the CONCORD-2—investigated survival among cervical, liver, prostate, and stomach cancer patients, in addition to the cancers studied in the ICBP, and obtained similar findings.

The current investigation, SurvMark-2 will build on the ICBP by investigating cancer incidence, mortality, cancer coding, registration practices, and death registration practices. The SurvMark-2 will also examine eight cancers of public health importance: colon, liver, lung, oesophagus, ovarian, pancreatic, rectum, and stomach.

Cancer incidence data and survival and mortality data will be supplied to the International Agency for Research on Cancer (IARC; Lyon, France) by the cancer registries of five high-income countries.

Data will be drawn from the NSW Cancer Institute, and linked with the National Death Index to obtain date and all causes of death. The linked dataset will be sent to the IARC for analysis.

Findings will provide important information about variations in cancer survival rates between countries, and across different cancer types. Furthermore, the cancers included in this study have considerable public health significance in Australia.

Healthcare professionals and policymakers can utilise study findings to enhance the care and management of cancer patients and increase survival rates.

Health economics of early childhood and maternal health: Using data linkage to identify health service use, and health system and patient costs (EO 2017/1/338)

Applicant: James Cook University
Approval valid until: 01 July 2020

Maternity and child healthcare costs are a significant source of expenditure for many families. But, for some families, these costs can be a significant barrier to accessing healthcare services.

To date, limited research has examined out-of-pocket expenditure for maternity and child healthcare services.

This study examines out-of-pocket expenditure for healthcare services, among mothers who gave birth in Queensland, between 2012 and 2015.

Specific objectives include:

1. Quantify health system use and expenditure on antenatal, postnatal, and early childhood health events in Queensland, including hospital-admitted patient services, out-of-hospital services, and prescription pharmaceuticals
2. Compare health system use, health system expenditure, and out-of-pocket expenditure with clinical outcomes
3. Compare levels of health system use, health system expenditure, and out-of-pocket expenditure for different geographic and socio-economic groups.

The study population consists of mothers who gave birth in Queensland, between 01 July 2012 and 30 June 2015, and their babies. A cohort comprising data drawn from several Queensland health administrative datasets will be linked with the Medicare Benefits Schedule and the Pharmaceutical Benefits Schedule.

Findings will have important implications for the development of policies and initiatives to enhance the accessibility of maternity and child healthcare services.

Mitral valve replacement—a review of 20 years experience at a single centre (EO 2017/2/357)

Applicant: Prince of Wales Hospital
Approval valid until: 09 May 2019

This study investigates survival outcomes for patients, who underwent mitral valve replacement, at the Prince of Wales Hospital, between January 1996 and December 2016.

A patient cohort will be linked with the National Death Index.

Findings will enable healthcare professionals to identify preoperative and operative characteristics that may be risk factors for mortality, following mitral valve replacement. Furthermore, study investigators have examined survival outcomes for mitral valve repair patients. Findings will also enable healthcare professionals to compare mortality rates between mitral valve replacement patients and mitral valve repair patients.

The Childhood to Adolescence Transition Study (CATS): The long-term effects on schooling outcomes of early developmental vulnerabilities in children (EO 2017/2/354)

Applicant: Murdoch Children’s Research Institute
Approval valid until: 29 June 2018

The Childhood to Adolescence Transition Study (CATS) is a longitudinal study that began in 2012. It has followed a cohort of over 1,200 children through the middle years of school, in and around metropolitan Melbourne. Data are collected annually and, to date, investigators have collected five waves of data.

The purpose of this study is to identify individual, family and school factors that contribute to children’s developmental and educational outcomes.

CATS data will be linked with Australian Early Development Census (AEDC) data. The AEDC is a nationwide, data collection of early childhood development from the first year of school. It collects data about the following areas: physical health; social competence; emotional maturity; language and cognitive skills; and communication skills.

Findings will inform health and education policies to enhance children and young people’s health, wellbeing and academic attainment.

Temporal trends in the incidence, site and survival of metastatic breast cancer in Australia (EO 2017/2/255)

Applicant: University of Notre Dame
Approval valid until: 31 December 2019

Breast cancer is one of the most prevalent cancer types in Australia. Approximately 17,000 women are diagnosed each year. Of those diagnosed, approximately 3,000 die each year. Recent improvements in adjuvant therapy have improved survival rates. However, there is no Australian population-based information about their impact on the risk of cancer spread (metastasis) and survival after metastasis.

This linkage project will investigate breast cancer patients’ survival outcomes, before and after the introduction of new adjuvant therapies. The project will utilise two patient groups: women diagnosed with breast cancer between 2001 and 2002 (before the introduction of the new treatments) and women diagnosed with breast cancer between 2006 and 2007 (after the introduction of the new treatments). Another objective is to identify other factors that contribute to survival outcomes, such as demographic variables (for example, remoteness and socioeconomic status).

A patient cohort will be linked with the Medicare Benefits Schedule and the Pharmaceutical Benefits Schedule.

Findings will inform treatment planning and enable healthcare professionals to enhance the care and management of women newly diagnosed with breast cancer and women with an existing diagnosis.

The impact of combat study: Evaluation of biological markers of traumatic stress risk and resilience (EO 2017/2/355)

Applicant: University of Adelaide
Approval valid until: 31 December 2018

The Evaluation of biological markers of traumatic stress risk and resilience project, a collaboration between Australian and Canadian investigators, extends the analysis undertaken in two previous linkage projects: The Middle East Area of Operations (MEAO) Prospective Health Study (EC 2009/3/30) and the transition and Wellbeing Research Programme: Impact of Combat Study (EO 2015/1/161).

There are two components to the Evaluation of biological markers of traumatic stress risk and resilience project: extended serum testing and storage for use in later studies.

The objective of this study is to identify biomarkers of mental illness (for example, post-traumatic stress disorder (PTSD)), health risk and resilience, among current and ex-serving Australian Defence Force members.

Data will be linked with the National Death Index to identify deceased military personnel, so that study investigators can exclude them (and their families) from the consent process.

Findings will provide important information about specific biomarkers of PTSD, and resilience. Healthcare professionals will be able to better identify individuals who may be at risk of PTSD or an adverse reaction (and those who may not) after exposure to a potentially traumatic event. Findings will also enable healthcare professionals to better establish prognoses following treatment for PTSD.

Victorian Cardiac Outcomes Registry (VCOR) (EO 2017/2/352)

Applicant: Monash University
Approval valid until: 01 June 2025

The Victorian Cardiac Outcomes Registry (VCOR) is a Clinical Quality Registry (CQR), designed to monitor the quality of care of patients with specific cardiac conditions, or those undergoing cardiac procedures, in Victorian hospitals. It collects data about patients, aged 18 and above, who present with cardiovascular conditions (e.g., acute myocardial infarction and heart failure), and who receive one or more of the following procedures: percutaneous coronary intervention (e.g., coronary stents) and cardiac implantable electronic devices (e.g., pacemakers).

The VCOR also collects information about procedures undertaken at participating Victorian hospitals at both baseline and 30 days post-procedure. The registry currently contains approximately 35,000 patient records.

In order to establish VCOR patient survival outcomes, VCOR data will be linked with the National Death Index.

Study findings will update existing VCOR data. Healthcare professionals can use the study findings to improve cardiac patient outcomes by enhancing the quality of care, and reducing mortality rates.

The magnitude of the association between antipsychotic medication use in psychiatric admissions and the increased risk of sudden cardiac death (EO 2017/2/351)

Applicant: Hunter New England Local Health District
Approval valid until: 01 August 2019

Psychotic-spectrum disorders are highly prevalent in the community. They have been linked to marked psychosocial impairment and, in severe cases, mortality. Both historically, and currently, pharmaceutical interventions (e.g., antipsychotics and anti-depressants) have been the treatment of choice to manage the adverse psychological and physical effects of these disorders.

The study cohort consists of adult psychiatric inpatients, admitted to public hospitals in the Hunter Region, NSW, between 2000 and 2010. Data about the following areas: electrocardiograph morphology and discharge diagnosis will also be collected.

This study will determine if there is any association between antipsychotic or antidepressant drug use and an increased mortality rate. Specific objectives include:

1. Compare antipsychotic mortality rates with those of the general population
2. Identify the magnitude of the association psychiatric medication use and mortality (all causes)
3. Examine the results of any cardiac investigations, conducted during patients’ inpatient admissions, among those who later died from sudden cardiac death.

Data will be linked with the National Death Index.

Findings will provide much-needed information about any associations between psychiatric medication use and mortality. Healthcare professionals can utilise this information to improve the management of psychiatric patients, and reduce mortality rates.

Aspirin Reducing Events in the Elderly (ASPREE) (EO 2017/2/350)

Applicant: Monash University
Approval valid until: 31 December 2018

ASPREE (ASPirin in Reducing Events in the Elderly) is a large-scale, international, double-blind, randomised, placebo-controlled study, that investigates whether daily, low-dose aspirin (100 mg) extends life, free of physical and mental disability among healthy people aged 70 years and over. It is the largest clinical trial, of its kind, in Australia, and has recruited more than 16,500 participants, and registered more than 2,700 general practitioners as co-investigators.

A primary objective of the ASPREE study is to establish whether low-dose aspirin prolongs life, or life free of disability (both physical and mental) among the healthy elderly, over a five-year treatment period. A secondary objective is to determine the effect of low-dose aspirin on mortality rates among the elderly.

ASPREE study data will be linked with the National Death Index to identify deceased individuals, and the cause of death.

In Australia (and overseas), there has been a steady rise in life expectancy. In an ageing Australian population, which continues to grow, study findings will have significant implications for the care of the elderly (e.g., delaying the onset of chronic disease associated with ageing), and for meeting their unique health needs.

Linking the Myeloma and Related Diseases Registry with the National Death Index (EO 2017/2/349)

Applicant: Monash University
Approval valid until: 10 May 2024

Myeloma, also known as multiple myeloma, is a type of bone marrow cancer. It is an incurable disease, arising from abnormal plasma cells in the bone marrow. Normal plasma cells produce antibodies to help fight infection. In myeloma, the plasma cells release only one type of antibody—paraprotein—that is ineffective against infection. Myeloma usually affects areas where bone marrow is normally active: bones of the spine, skull, pelvis, the rib cage, and the areas around the shoulders and hips. It is most common in those aged 60 years and older, with men affected more than women.

The Myeloma and Related Diseases Registry (MRDR) is a national registry, established to collect data about diagnosis, treatment and outcomes among patients with myeloma and related diseases.

In order to improve (and maintain) the accuracy of MRDR mortality data, MRDR data will be linked with the National Death Index on a continual basis.

The updated MRDR mortality data will enable healthcare professionals to improve survival rates for myeloma patients, through more accurate treatment evaluation, and more informed treatment planning and implementation.

HABITAT NDI Data Linkage (EO 2017/2/336)

Applicant: Australian Catholic University
Approval valid until: 31 December 2020

HABITAT (How Areas in Brisbane Influence healTh And activity) is a multilevel, longitudinal study, that began in 2007, and which collects data about lifestyle, health and wellbeing, and the facilities and services available in local areas. It currently includes over 11,000 Brisbane residents from 200 neighbourhood areas.

The primary objective of the HABITAT study is to examine the effect of physical activity (and sedentary behaviour) on physical functioning over the lifespan, and the extent to which neighbourhood environment, socio-demographic, social and psychological factors contribute to physical activity (and sedentary behaviour).

HABITAT study data will be linked with the National Death Index to identify deceased participants, and to explore neighbourhood predictors of mortality and survival.

Study findings will inform health policies and initiatives, designed to prevent (or delay) the onset of physical function decline among the elderly. Furthermore, this will reduce demands placed on the healthcare system.

The Royal Prince Alfred Hospital Transcatheter Aortic Valve Implantation Outcomes Study (RTOS) (EO 2017/2/335)

Applicant: Royal Prince Alfred Hospital
Approval valid until: 31 December 2018

Transcatheter aortic valve implantation (TAVI), a minimally invasive procedure, is the primary treatment option for aortic stenosis, rather than surgical aortic valve replacement (SAVR), among high-risk patients. As the ageing population continues to increase in Australia, the prevalence of aortic stenosis is also expected to increase. Such a trend has occurred in many highly-developed countries, where the number of annual TAVI procedures has also increased.

There is currently a paucity of research about the long-term outcomes of TAVI patients, in Australia. For this reason, the RTOS (Royal Prince Alfred Hospital Transcatheter Aortic Valve Implantation Outcomes Study) was established.

The objectives of the RTOS are as follows:

1. Continual review of TAVI outcomes
2. Identify predictors of post-surgical outcomes to facilitate pre-operative risk stratification
3. Undertake a health economic analysis of TAVI compared with SAVR.

Data will be linked with the National Death Index to obtain important mortality information for the TAVI patients in the study cohort.

Findings will have implications for improving the care of aortic stenosis patients, through the provision of cost-effective surgical procedures, designed to enhance survival outcomes.

Concord Health and Ageing in Men Project (CHAMP) (EO2017/3/312)

Applicant: University of Sydney
Approval valid until: 31 May 2020

This study is a continuation of the Concord Health and Ageing in Men Project (CHAMP), an epidemiological study that investigated the prevalence and burden of disease of various age-related impairments, including cognitive decline and dementia, incontinence, reduced mobility and functionality in older Australian men. Study participants are assessed at baseline, and then followed-up after two years, after five years and after eight years. The CHAMP commenced in 2005, initially collecting data from a cohort of 1,705 men aged 70 years and over.

This study has the following objectives:

• enhance the existing evidence-base regarding health trajectories of older Australian men
• understand the relationships among health behaviours, chronic health conditions and the use of aged care services
• understand the impact use of aged care services have on quality of life, cognitive functioning, medication use and mortality.

This study will broaden the scope of data collected in the CHAMP by including data from a National Aged Care dataset and mortality data. The CHAMP cohort will be linked to the Pathways in Aged Care (PIAC) database and the National Death Index (NDI).

The PIAC will provide important data about aged care program utilisation, and the NDI will provide important mortality data about deceased CHAMP study participants.

Study findings will inform healthcare policy designed to improve the quality of life and functionality of older Australian men.

Costs of Surviving Cancer—a Queensland study (COS–Q) (EO2017-3-348)

Applicant: University of the Sunshine Coast
Approval valid until: 01 January 2023

This study examines long-term health service usage and associated costs for cancer survivors in Queensland, according to time since diagnosis. This study has the following objectives:

• quantify cancer patients’ health service usage, over time
• identify factors associated with higher health service use and higher costs
• estimate lifetime health service use and costs
• identify opportunities to improve future health service delivery.

The study cohort consists of approximately 475,000 individuals, diagnosed with cancer in Queensland (QLD) over the past 15–20 years. This data will be drawn from the QLD Cancer Registry.

Study cohort data will be linked to the National Death Index, the Australian Cancer Database, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme.

Study findings will contribute to the development of economic models to estimate lifetime outcomes of cancer survivors, according to cancer type. A better understanding of cancer survivors’ long-term health trajectories will inform healthcare policy to improve quality of life, reduce the risks of further cancers developing and decrease mortality rates.

Using registry, administrative and research data to prevent deaths from breast cancer in Australia (EO2017/3/361)

Applicant: University of South Australia and South Australian Health and Medical Research Institute (SAHMRI)
Approval valid until: 31 August 2020

The prevalence of breast cancer and its burden of disease is well documented. It is currently one of the most prominent causes of mortality in women. Over the years, there have been significant advancements in evidence-bases for detecting breast cancers, particularly early detection, and treating breast cancers. Despite these medical advancements, breast cancer continues to be a leading cause of mortality.

This study will develop a large, population-based breast cancer database to investigate trends and differences in the prevalence and burden of disease, according to a multitude of variables including: demographic status (e.g., age, sex, remoteness, socioeconomic status); medical comorbidity; screening history and frequency; treatment utilisation and timeliness; survival rates.

The study cohort will consist of approximately 16,000 women, diagnosed with breast cancer from 01 January 2000 to the present, in South Australia (SA). Data will be drawn from the SA Cancer Registry.

Study cohort data will be linked to the National Death Index, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme.

Study findings will inform healthcare policy designed to improve the detection and treatment of breast cancer. Findings will also enable healthcare providers to reduce the burden of disease, and mortality rates, associated with breast cancer.

Inequalities in health service utilisation, morbidity and mortality of cardiovascular disease in Queensland adults: A longitudinal cohort study (EO 2017/3/362)

Applicant: Griffith University
Approval valid until: 31 December 2020

Cardiovascular disease (CVD) is the leading cause of death in Australia. Historically, lifestyle factors (e.g., poor diet, smoking, alcohol use and sedentary lifestyles) have accounted for differences in the prevalence and burden of disease of CVD. Despite significant advances, over the years, in the availability and quality of healthcare services, healthcare utilisation may also be an important factor.

This study investigates healthcare service use and costs of care associated with CVD. Specific aims of this study are:

• compare associated health service utilisation for patients with CVD
• determine prior use of relevant cardiovascular and circulatory health services and medications
• investigate the cost of care for various CVD.

The study cohort will consist of adult patients who had a cardiovascular event and presented to a Queensland hospital in 2010. Study cohort data will be linked to the National Death Index, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme.

Healthcare providers will use study findings to improve the management of patients with CVD, thereby reducing the associated burden of disease. Findings will also inform healthcare policy to enhance the availability and accessibility of healthcare services for individuals with CVD.

Medicare-derived patient and sibling links (EO2017-3-372)

Applicant: Australian Taxation Office
Approval valid until: 16 May 2018

The Australian Taxation Office (ATO) has produced a de-identified longitudinal data collection using tax and superannuation information called the Australian Longitudinal Individual File (aLife). This is an enduring data collection (currently covering from 2000 to 2016) that will be used for social welfare and economic research, including intergenerational income mobility and household inequality. De-identified samples of aLife will be made available to ATO-approved external researchers through the Secure Unified Research Environment (SURE).

To facilitate intergenerational and household-level research, family groupings were derived in the aLife data collection using information held by the ATO.

To further enhance the accuracy of the aLife family groupings data from the aLife collection will be linked to the MBS in order to derive a flag to indicate groups of records relating to the same Medicare card. No identified information will be provided to the ATO.

This project will enable the ATO to undertake intergenerational public policy research, such as:

• understanding household health and welfare impacts of the tax and transfer system
• understanding household labour market decisions
• understanding household responses to tax and transfer system
• estimating intergenerational income mobility and household inequality.

Study findings will improve the quality of public policy research, investigating welfare and economic issues affected by intergenerational income mobility and household inequality.

Improving access to primary care for Aboriginal babies in Western Australia (EO2017/4/368)

Applicant: University of Western Australia
Approval valid until: 1 November 2020

This study investigates the effectiveness of a model of primary healthcare designed to enhance accessibility to healthcare and reduce hospitalisation rates in Western Australian Aboriginal infants, aged less than three months. This study will also investigate the timing of Medicare enrolment, immunisation rates in the first six-months of life, and utilisation rates of routine child health checks.

Specific objectives are to determine if best practice levels in access to primary care can improve:

• child health screening assessments in Aboriginal infants, aged less than three months
• immunisation coverage in Aboriginal infants, aged less than six months.

The WA Data Linkage Branch (WA DLB) will prepare a study cohort by drawing approximately 4,300 Aboriginal babies, born between October 2015 and April 2018, from the Western Australian Registry of Births, Deaths and Marriage. WA DLB will link the study cohort to hospital and emergency data.

The AIHW will link the study cohort to the Medicare Benefits Schedule and the Australian Immunisation Registry.

Study findings will inform health policies and practices, designed to enhance the health and well-being of Aboriginal and Torres Strait Islander people.

Towards optimising hospitalised older adults’ medications (EO2017/4/373)

Applicant: University of Sydney and Royal North Shore Hospital
Approval valid until: 1 September 2020

Medicating older patients, particularly those experiencing dementia and those approaching the end of their lifespan, poses significant challenges to healthcare professionals. Older patients are a highly vulnerable group due to an increased susceptibility to medication side effects, age-related cognitive decline and a tendency to present with multiple medical complaints. This last factor—comorbid medical conditions—often necessitates polypharmacy use to manage multiple symptoms and multiple side effects.

In recent years, a major limitation of polypharmacy use in older patients has been the unnecessary prescription (and use) of certain medications. For example, one in five medications prescribed to older patients has been unnecessary, even harmful.

This study investigates the prevalence of unnecessary, even inappropriate, polypharmacy use in hospitalised older patients. It also investigates the effectiveness of an intervention to reduce the incidence of inappropriate polypharmacy use in older patients.

This study will draw data from several NSW administrative health datasets:

• NSW Admitted Patient Data Collection
• NSW Emergency Department Data Collection
• NSW Registry of Births, Deaths and Marriage
• NSW Cause of Death Unit Record File

The Centre for Health Record Linkage will link these datasets to prepare a study cohort. The AIHW will link the study cohort to the Pharmaceutical Benefits Scheme.

Study findings will inform an evidence-base regarding the prevalence and management of inappropriate polypharmacy in hospitalised older people. Findings will also inform health practice policies to reduce the incidence of inappropriate polypharmacy use in older people and adverse side effects. Healthcare professionals can use study findings to improve the care of older hospitalised patients.

Eating As Treatment (EAT: a stepped-wedge, randomised controlled trial of a health behaviour change intervention provided by dieticians to improve nutrition in patients with head and neck cancer undergoing radiotherapy) (EO2017/4/384)

Applicant: University of Newcastle
Approval valid until: 31 December 2023

The EAT—a randomised, controlled study collecting data from hospital patients in five states—examined the effectiveness of a psychological intervention to treat malnutrition (and any related psychological symptoms, such as depression and anxiety) in head and neck cancer patients undergoing radiotherapy. The EAT study found that the intervention was effective in enhancing nutritional status and quality of life, while reducing psychological symptoms.

Study investigators wish to establish survival outcomes of EAT study participants and, in particular, whether the intervention is effective in reducing mortality rates.

The EAT study will be linked to the National Death Index to examine survival outcomes and to identify important mortality data for any deceased participants.

Study findings will inform an evidence-base for the management of treatment side effects, such as malnutrition and psychological symptoms, in cancer patients undergoing radiotherapy. Healthcare professionals will use study findings to reduce psychological distress among cancer patients, thereby enhancing quality of life.

Reducing the evidence practice gap in preventing rehospitalisation and recurrence following stroke (EO2017/4/386)

Applicant: Monash University
Approval valid until: 31 December 2027

In Australia, stroke has become a national healthcare priority due to its burden of disease. The effects of a stroke are quite debilitating—not only for patients but also for their families. Strokes also place significant financial demands on the healthcare system.

Stroke survivors can still maintain quality of life, largely because of the availability of several treatments such as blood pressure lowering.

A recent approach—Chronic Disease Management (CDM)—encourages general practitioners to be actively involved in the management of chronic illness, including stroke.

This study investigates the effectiveness of CDM in the management of stroke.

A cohort of adult stroke patients will be linked to the National Death Index, Medicare Enrolments File, Medicare Benefits Schedule, and Pharmaceutical Benefits Scheme and Repatriation Pharmaceutical Benefits Scheme.

Study findings will provide important information about the effectiveness of CDM in reducing rates of reoccurrence and rehospitalisation among stroke survivors.

An empirical framework for assessing mortality and morbidity in people with psychotic illness: 7 year follow-up and 10-year retrospective analysis of 2,075 Survey of High Impact Psychosis (SHIP) participants using linked mortality and health registers (EO2017/5/236)

Applicant: University of Western Australia
Approval valid until: 31 December 2020

This study will examine mortality and morbidity outcomes in patients with psychotic illness. Data will be drawn from the National Survey of High Impact Psychosis (SHIP) study.

This study has the following aims:

• establish Australian benchmarks about mortality and morbidity to monitor the impact of public health policies and procedures on changes in mortality and morbidity rates
• reformulate risk prediction for cardio-metabolic disease, specifically for individuals with severe mental illness
• calculate the economic burden of mortality and morbidity related to psychotic illness, from both a governmental and societal perspective.

SHIP cohort data will be linked to the National Death Index to establish survival outcomes and to obtain relevant mortality data.

Study findings will inform health policies designed to enhance the care and management of patients with psychotic illness.

The nature and frequency of health contacts in victims and perpetrators of family violence (EO2017/5/380)

Applicant: Swinburne University of Technology
Approval valid until: 31 December 2019

Family violence victims experience significant psychological distress, such as depression, anxiety, substance abuse and, in severe cases, suicide. Victims also report prominent physical ailments such as cardiovascular and gastrointestinal complaints, and previous studies have found elevated use of health services and medication in family violence victims.

Conversely, little is known about the physical health complaints and psychological distress that family violence perpetrators may experience.

This study investigates health service use among victims and perpetrators of family violence. Family violence data (for approximately 6,000 individuals) will be drawn from Victorian Police records. The Victorian Data Linkage Unit will prepare a cohort by linking this data to the following Victorian data sources:

• Public Mental Health Data
• Admitted Episodes Dataset
• Emergency Minimum Dataset.

To obtain data about the use of healthcare services and medication, the AIHW will link the study cohort to the following Commonwealth datasets:

• Medicare Benefits Schedule
• Pharmaceutical Benefits Scheme.

Study findings will inform improvements to existing police protocols designed to manage family violence incidents and the allocation of targeted community resources to manage family violence. Healthcare providers will use study findings to assist victims to manage the physical health and psychological consequences of family violence. In addition, where psychological distress is a risk factor for perpetrating family violence, findings will have implications for developing diversionary programmes to reduce family violence rates.

Healthwise Cancer and Mortality Study (EO2017/5/382)

Applicant: Monash University
Approval valid until: 1 February 2031

The Healthwise Cancer and Mortality Study is a longitudinal investigation of adverse, occupational health outcomes among workers at Alcoa, an Australian aluminium treatment and processing facility. The tendency for any adverse health outcomes—cancer and, in severe cases, mortality—to have a delayed onset has meant that extensive follow-up study is required to monitor the incidence over time.

This study extends the original work undertaken in the Healthwise Cancer and Mortality Study by establishing the incidence and prevalence of cancer and mortality, over time, among Alcoa workers. Specifically, this study will examine cancer incidence, according to primary site, and whether this incidence and any mortality are linked to occupational exposure.

The study cohort consists of approximately 12,500 Alcoa workers. Data will be linked to the National Death Index to identify any deceased individuals, and to the Australian Cancer Database to identify any individuals diagnosed with cancer. Several repeat linkages will be undertaken to monitor the incidence of cancer and mortality over time.

Study findings will inform an evidence-base about any relationships between occupational exposure and adverse health outcomes among Alcoa workers. Healthcare providers can use study findings to manage any risks of occupational exposure.

QUIET-IPF Study: Quality of Life and Costs Associated with Idiopathic Pulmonary Fibrosis (EO2017/5/389)

Applicant: Menzies Institute for Medical Research (University of Tasmania)
Approval valid until: 31 December 2021

Idiopathic pulmonary fibrosis (IPF) is a debilitating condition which affects the lungs. Currently, no effective treatments are available, and life expectancy is usually between two and four years. In response to this poor prognosis, researchers developed and implemented the QUIET-IPF (Quality of LIfE and Costs AssociaTed with Idiopathic Pulmonary Fibrosis) study to quantify the health economic and quality of life burdens associated with IPF.

This linkage project will extend the QUIET-IPF study by examining survival outcomes and health service use among IPF patients. It will recruit study participants from the Australian IPF Registry. Data will be linked to the National Death Index.

Study findings will facilitate the development of an IPF health economics model to enable health economic evaluations of new treatments and interventions.

Quality Assurance Head & Neck Database and Central Nervous System Database Projects (EO2017/5/392)

Applicant: Prince of Wales Hospital
Approval valid until: 31 December 2018

To facilitate the management of cancer patients, including the provision of treatment in accordance with best practice standards, the Prince of Wales Hospital developed the Head and Neck and Central Nervous System databases. Healthcare providers routinely use these databases to monitor patient progress, to ensure that all treatment is consistent with international standards, and, in the event of mortality, to establish whether this was related to a primary cancer or an unrelated medical condition.

This study aims to identify cause/s of death and survival time from the date of cancer treatment and whether treatment modifications are required to improve quality of life and survival.

Approximately 2,000 cancer patients received treatment at the Prince of Wales Hospital between 1967 and 2016.This cohort will be linked to the National Death Index to examine survival outcomes and to obtain mortality data for any deceased patients.

Study findings will inform protocols designed to enhance the care and management of cancer patients at the Prince of Wales Hospital to maximise quality of life, while reducing mortality rates.

Long-term effects of erythropoietin in patients with moderate to severe traumatic brain injury: A follow-up study of an international randomised controlled trial (EO2017/5/393)

Applicant: Monash University
Approval valid until: 1 February 2019

Traumatic Brain Injury (TBI) is characterised by marked impairment and disability, and in severe cases can lead to death. Prognoses among TBI patients are poor and the World Health Organisation has forecasted that by 2030 TBI will be the third leading cause of disability.

The EPO-TBI study conducted between 2010 and 2015, is one of the few studies that examined the effect of erythropoietin on survival outcomes. Findings revealed lower mortality rates among TBI patients treated with erythropoietin, compared to those treated with a placebo. However, it is unclear whether this effect remains, even after several years following erythropoietin treatment.

This linkage study investigates survival outcomes in patients from the original EPO-TBI study. There were 226 living patients at the end of the original study.

Data will be linked to the National Death Index to identify deceased patients and to obtain the causes of death.

Study findings will contribute to the design of future randomised controlled trials for this highly debilitating condition.

Biomarkers in younger-onset neurocognitive disorders (B_YOND) (EO2017/5/398)

Applicant: NorthWestern Mental Health, Neuropsychiatry Unit
Approval valid until: 30 September 2021

Young-onset dementia (YOD), a neurological condition diagnosed before age 65 years, affects about 26,000 people in Australia. It usually occurs during middle-age—when many people are at the peak of their occupational functioning and income-earning capacity and/or are parenting children. People with YOD display marked impairment in a multitude of domains.

This study examines the cognitive, psychiatric and neurological effects of YOD. Primary healthcare providers will use study findings to identify YOD patients at risk of adverse health outcomes to improve their care and management.

Data will be linked to the National Death Index to investigate survival outcomes and to obtain relevant mortality data.

A surveillance system to monitor the incidence of diagnosed hepatitis C re-infection in New South Wales residents who have received direct-acting anti-viral therapy for hepatitis C infection (EO2017/5/403)

Applicant: NSW Health
Approval valid until: 31 December 2021

In Australia, about 90 per cent of new hepatitis C infections arise from unsafe injecting drug use. Healthcare providers have used various pharmaceutical interventions to treat hepatitis C infections.

To reduce the incidence of hepatitis C infection, the Australian Government listed direct acting antiviral (DAA) medications on the Pharmaceutical Benefits Scheme in March 2016. Studies have shown that DAAs have been highly efficacious in treating hepatitis C infection, with efficacy rates of 95 per cent.

In response to the high rates of injecting drug use, combined with the elevated rates of hepatitis C infection, the NSW Government implemented a surveillance system to monitor hepatitis C infection (and re-infection) rates in NSW residents receiving DAA medications.

This study examines rates of hepatitis C infection, following DAA medication use, particularly for NSW Aboriginal and Torres Strait Islander people for whom notification rates are eight-and-a-half times higher than for non-Indigenous Australian individuals.

Data will be linked to the Pharmaceutical Benefits Scheme, and also the National Death Index to identify deceased study participants to be excluded from the study. Study findings will inform health policies, designed to assist healthcare providers to treat patients with hepatitis C infection, reducing the associated burden of disease.

Health service access for children entering out-of-home care in Victoria (EO2017/5/405)

Applicant: Murdoch Children’s Research Institute
Approval valid until: 31 December 2021

Children in out-of-home care have historically presented with marked levels of physical, mental and developmental impairment. The National Standards for Out-of-Home Care, a best-practice model, was established to identify developmental and psychological impairment in children and young people in out-of-home care in a timely manner to ensure that healthcare providers can implement targeted interventions accordingly. To evaluate the effectiveness of the National Standards, the Pathway to Good Health program was introduced to some regions in Victoria.

This study will establish the timeliness and the extent of healthcare service use in children, aged up to 13 years, who received out-of-home care in Victoria for at least three months between 01 April 2010 and 31 December 2015. This study will also examine the effectiveness of the National Standards and the Pathway to Good Health program.

To meet these study objectives, the Victorian Data Linkage Unit will prepare a cohort dataset by linking records from the Victorian Child Protection Client Record Information System (children and young people meeting the inclusion criteria will be drawn from this data source) to records from several Victorian administrative datasets.

The AIHW will link the study cohort to the Medicare Benefits Schedule to identify healthcare services utilised.

Study findings will inform policies and guidelines designed to meet the healthcare needs of children and young people in out-of-home care. Healthcare providers will use study findings to identify children and young people in out-of-home care, who are at the most risk of adverse health outcomes, and to ensure that these healthcare needs are met.

Medically Assisted Reproduction: The role of IVF, ovulation induction and subfertility on reproductive and infant outcomes (EO2017/5/420)

Applicant: University of New South Wales
Approval valid until: 31 December 2021

In Australia, healthcare professionals have used a number of Assisted Reproductive Technologies (ART), such as in-vitro fertilisation (IVF) and various ovulation-induction medications to facilitate pregnancies in many women incapable of natural conception.

In recent years, there has been an influx of novel types and applications of ART, such as intracytoplasmic sperm injection, extended embryo culture and rapid embryo freezing. Furthermore, there has been an increase in utilisation rates of these novel ART applications. Despite these increased utilisation rates, there is still no evidence-basis for the effectiveness of these applications and the impacts (if any) on infant’s and children’s health outcomes.

This study examines the impact of different fertility treatments on reproductive outcomes and infant’s and children’s health outcomes. In particular, this study investigates whether novel types and applications of ART are related to any adverse health outcomes in infants and children.

The NSW Centre for Record Linkage will prepare a study cohort (approximately 600,000 women who gave birth in NSW and ACT from 01 January 2009 to the present) by linking data from several NSW health administrative datasets. The AIHW will link the study cohort to the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme.

Study findings will inform a much-needed evidence-base for the effectiveness of novel types and applications of ART and other fertility treatments. Healthcare providers will use this evidence-base to guide and inform best-practice, fertility treatment decisions.

Bilateral Agreements on Coordinated Care—Data Linkage Phase 1 (EO2017-5-421)

Applicant: Department of Health
Approval valid until: 31 December 2020

The Bilateral Agreements on Coordinated Care (the Bilateral Agreements) between the Commonwealth and jurisdictions are part of a national approach to improving health care coordination in Australia to fulfil expectations set by the Council of Australian Governments. The Bilateral Agreements include a broad range of coordinated care activities and projects that will be undertaken by the Commonwealth, states and territories. The Commonwealth’s key contribution to the Bilateral Agreements is the Health Care Home (HCH) model in primary care initiative.

The HCH trial is a common activity across all states and the Northern Territory. Two hundred general practices (GP) and Aboriginal Community Controlled Health Services (ACCHS) in ten Primary Health Networks (PHNs) in all states and the Northern Territory have agreed to recruit patients for the HCH trial. A linked dataset (the Bilaterals dataset) will be established to evaluate the HCH initiative involving the following datasets:

• State and Territory Admitted Patient National Minimum Datasets
• State and Territory Emergency Department National Minimum Datasets
• State and Territory Outpatient Services Data
• Medicare Benefits Schedule
• Pharmaceutical Benefits Scheme
• National Aged Care Data Clearinghouse
• National Death Index.

The dataset will include patients in the HCH trial as well a comparator sample of people from the trial areas but who were not in the trial.

The evaluation is being undertaken by the Commonwealth Department of Health. Consultants from Health Policy Analysis are leading the evaluation that also involves researchers from the University of NSW’s Centre for Big Data Research in Health, and the University of Technology’s Centre for Health Economics Research and Evaluation.

The key questions posed for the HCH evaluation are:

• How was the HCH model implemented and what were the barriers and enablers?
• How does the HCH model change the way practices approach chronic disease management?
• Do patients enrolled in HCH experience better quality care?
• What are the financial effects of the HCH model on governments, providers and individuals?

Study findings will inform a national evidence-base for the coordinated provision of healthcare services to patients with chronic and complex conditions in Australia. Furthermore, findings will inform health policies designed to facilitate the accessibility and availability of healthcare services within each of the jurisdictions.

NSW and ACT cancer health system performance reporting utilising linked administrative data to examine care, treatment patterns and health outcomes for people with cancer in ACT and NSW (EO 2016/1/224)

Applicant: Cancer Institute NSW
Approval valid until: 01 July 2021

This project seeks to develop a de-identified dataset containing data from several state and territory data sources, including: ACT Cancer Registry; NSW Cancer Registry; ACT and NSW Hospital Admissions; ACT and NSW Emergency Department Data Collections; BreastScreen NSW.

Data will also be drawn from the following Commonwealth data sources: National Death Index (NDI); Medicare Benefits Schedule (MBS); Pharmaceutical Benefits Schedule (PBS).

The final, linked dataset will be used for various purposes, including:

• Investigate, monitor and evaluate patterns of care and outcomes for ACT and NSW cancer patients.
• Evaluate the impact of patient, disease, treatment and socio-demographic factors on cancer incidence and outcomes.
• Broaden available non-identifiable linked data for health service planning, performance monitoring, and reporting.

Findings will contribute to improved clinical outcomes for ACT and NSW cancer patients.

Aboriginal and Torres Strait Islander Better Cardiac Care data linkage project, Queensland (EO 2016/1/233)

Applicant: Queensland Health
Approval valid until: 30 June 2018

The Australian Health Ministers’ Advisory Council (AHMAC), at the 2013 Closing the Gap Strategic Discussion, highlighted disparities in the incidence of cardiovascular complications and treatment utilisation between Indigenous and non-Indigenous individuals as a major health priority. The Better Cardiac Care for Aboriginal and Torres Strait Islander People project was established to address these disparities.

The objective of this study is to assess the continuum of cardiac care against clinical guidelines and best practice standards. The cohort consists of patients, of all ages, who were first hospitalised in Queensland, during the period 2010/2011 to 2014/2015, with a diagnosis of Ischaemic Heart Disease (IHD), Congestive Heart Failure (CHF), Stroke or Acute Rheumatic Fever/Rheumatic Heart Disease (ARF/RHD).

The study cohort will be linked with the National Death Index (NDI); Medicare Benefits Schedule (MBS); Pharmaceutical Benefits Schedule (PBS).

Findings will inform health service planning to improve the availability and accessibility of treatment for Indigenous individuals with cardiovascular complications.

Sydney Centenarian Study (EO 2016/1/234)

Applicant: University of New South Wales
Approval valid until: 01 July 2018

Australia’s rapidly increasing ageing population, particularly Centenarians, continues to place significant demands on the health system. This project—The Sydney Centenarian Study—a longitudinal investigation, seeks to identify genetic and environmental factors that contribute to quality of life among Sydney residents aged 95 years and over.

The objectives of this study include:

• Identify the prevalence of major medical and neuropsychiatric disorders
• Explore quality of life, mental health, physical health, and degree of functional independence.

Data will be linked with the National Death Index (NDI).

Findings will inform health policy and initiatives designed to improve and maintain quality of life among elderly individuals.

The Older Twins Study (EO 2016/1/237)

Applicant: University of New South Wales
Approval valid until: 01 July 2018

The Older Australian Twins Study (OATS) is a comprehensive study of ageing in 600 twins, older than 64 years, recruited through the Australian Twin Registry. A major focus of this investigation is cognitive decline, and establishing the role of genetic and environmental factors.

The OATS cohort will be linked with the National Death Index (NDI) to identify deceased individuals and their cause/s of death.

OATS findings will contribute to a greater understanding of the precursors of cognitive decline. This information can be used to inform early interventions and initiatives that may delay, or even prevent, the onset of cognitive deterioration.

Assessment of breast density as a potential surrogate for efficacy of adjuvant therapy in early breast cancer (EO 2016/1/238)

Applicant: Southern Metropolitan Health/University of Western Australia
Approval valid until: 31 December 2017

Among women, breast cancer is the most common type of cancer diagnosed. The majority of cases are hormone receptor positive. This study seeks to identify factors that may be linked to improved outcomes for women with hormone receptor positive breast cancer.

A study cohort, consisting of approximately 1,900 women registered on the Royal Perth Hospital Breast Unit Database, between 1994 and 2011, will be linked with the Pharmaceutical Benefits Schedule (PBS) to assess treatment adherence and concomitant prescription medication use.

Findings will contribute to the development of initiatives and interventions, designed to optimise outcomes.

Sydney Memory and Ageing Study (SMAS) (EO 2016/1/239)

Applicant: University of New South Wales
Approval valid until: 01 July 2018

The Sydney Memory and Ageing Study (SMAS) was initiated to investigate the prevalence of and progression of cognitive decline in elderly individuals.

The SMAS study cohort will be linked with the National Death Index (NDI) to identify deceased individuals, their age at death and cause/s of death.

Findings will inform policies and initiatives designed to enhance elderly Australians’ quality of life.

National Echo Database Australia (NEDA) (EO 2016/1/243)

Applicant: University of Notre Dame
Approval valid until: 28 February 2023

An objective of this study is to establish a database of individuals with pulmonary hypertension—a common, yet under-diagnosed condition characterised by high blood pressure between the heart and lungs. Both retrospective and prospective data will be collected from digital echo laboratories across Australia.

The Echo database will be linked with the National Death Index (NDI) as part of this study.

The database will facilitate the identification of individuals with pulmonary hypertension, and those at risk of this condition. This should allow health professionals to reduce the burden of disease, and enhance quality of life.

Cushing’s Disease: Understanding the long-term morbidity and mortality in the context of control and relapse (EO 2016/1/244)

Applicant: Royal Adelaide Hospital
Approval valid until: 01 March 2019

This study investigates post-surgery outcomes among patients with Cushing’s Disease—a condition characterised by excessive release of adrenocorticotropic hormone from the anterior pituitary gland.

A cohort will be drawn from national and state-based hospital record data. It will be linked with the National Death Index (NDI) to:

• Calculate mortality rates
• Identify remission predictors
• Identify mortality predictors

Findings will inform policies and practices designed to improve the management of Cushing’s Disease, and patients’ quality of life.

Life pathways and associated government service usage of NSW out-of-home care leavers (EO 2016/1/245)

Applicant: NSW Treasury
Approval valid until: 30 June 2021

This study seeks to examine life trajectories of young people, leaving out-of-home care (OOHC).

The study scope is individuals aged between 14 and 18 years, who exited OOHC from 1996/97 until the most recent financial year for which data are available.

The OOHC cohort will be linked with several Commonwealth data sources, including Medicare Benefits Schedule (MBS), Pharmaceutical Benefits Schedule (PBS), Centrelink data, Vocational Education and Training, and Higher Education support.

Findings will facilitate the development of policy directions and services for young people after leaving OOHC.

Melbourne Collaborative Cohort Study—Linkage to National Death Index and National Cancer Statistics Clearing House (EO 2016/1/247)

Applicant: Cancer Council Victoria
Approval valid until: 01 April 2026

The Melbourne Collaborative Cohort Study (MCCS) was a large, population-based investigation that prospectively examined known and putative risk factors for cancer and other common chronic disease.

This linkage project will link data from the Melbourne Collaborative Cohort Study (MCCS) with the National Death Index (NDI) and the Australian Cancer Database (ACD).

Findings will contribute to those of the MCCS by further consolidating existing initiatives and interventions that attempt to reduce the burden of disease posed by cancer and other chronic illness, and enhance quality of life.

Study of Heart and Renal Protection—Extended Review (SHARP-ER) (EO 2016/2/225)

Applicant: The George Institute for Global Health
Approval valid until: 01 May 2024

The original SHARP study investigated the effectiveness of cholesterol-lowering treatment among pre-dialysis and dialysis patients. A key objective was to examine the time taken to reach the first occurrence of a major atherosclerotic event. The cholesterol-lowering medication reduced this time by 17 per cent. Despite this finding, gaps still exist in research on reducing the burden of morbidity and mortality associated with kidney disease.

The SHARP-ER study extends the follow-up of the original SHARP study by an additional five years. Using patient visits, telephone contact, hospital record review and linkage to national data registries, this extended follow-up will provide data regarding the long-term effects for patients with chronic kidney disease and end-stage kidney disease.

This project will link the SHARP cohort with the National Death Index (NDI) to obtain mortality data for those who have died since the final SHARP study visit in 2010 until the end of the SHARP-ER study (2015).

Findings in this study will identify the long-term effects of cholesterol-lowering treatment on chronic kidney disease. Health practitioners can use this information to improve medical care for patients with chronic kidney disease, thereby minimising the burden of disease, and enhancing quality of life.

Victorian Cancer Registry—National Bowel Cancer Screening Program Linkage (EO 2016/2/229)

Applicant: Cancer Council Victoria
Approval valid until: 01 June 2020

This project investigates whether variables of inequality—socioeconomic status and distance to services—contribute to the incidence of, and survival from, colorectal cancer in Victoria.

Data from the Victorian Cancer Registry (VCR) will be linked with the National Bowel Cancer Screening Program (NBCSP).

Findings will lead to a greater understanding of factors that influence the variation in both risk and outcomes of colorectal cancer and help to better target interventions, thereby reducing the burden of disease.

Outcomes of repair of atrioventricular septal defect: A multicentre review (EO 2016/2/257)

Applicant: The Royal Children’s Hospital, Melbourne
Approval valid until: 01 January 2020

This project is a retrospective review of outcomes following heart surgery performed on approximately 2,000 children, in particular surgery for atrioventricular septal defects (AVSD). The sample was drawn from paediatric centres in Melbourne, Sydney, Perth, Brisbane and Auckland, of children who had surgery from 1975 onwards.

This project investigates the long-term outcomes of AVSD surgery. It will also study risk factors for patient mortality, while attempting to highlight surgical techniques and interventions associated with improved survival.

The study cohort will be linked with the National Death Index (NDI) to obtain mortality data for deceased patients in the cohort.

Health practitioners can use study findings to enhance survival rates following AVSD surgery.

Liver cancer prevention: Linking viral hepatitis diagnosis, treatment, and outcomes (EO 2016/2/258)

Applicant: The Doherty Institute
Approval valid until: 31 March 2019

Viral hepatitis is now the leading cause of liver cancer, and liver transplants. The aim of this study is to identify individuals most at risk of living with, and suffering adverse outcomes from, viral hepatitis. Another objective is to determine the level of clinical engagement and treatment uptake among those diagnosed with this debilitating condition, and to establish the impact of service access in preventing complications arising from infection.

The study cohort consists of people in Victoria who were the subjects of notification for hepatitis B or C between 1997 and 2014 (approximately 90,000). This cohort will be sourced from the Victorian Public Health Events Surveillance System, and linked with the following data sources: Victorian Admitted Episodes Dataset (VAED); Victorian Emergency Minimum Dataset (VEMD); Victorian Cancer Registry (VCR); National Death Index (NDI); Medicare Benefits Schedule (MBS); Pharmaceutical Benefits Schedule (PBS)

Findings will contribute to the early identification of individuals at risk of viral hepatitis and assist health practitioners in implementing interventions to minimise this risk, as well as adverse outcomes that may result following onset of the condition.

Propensity score survival analysis comparing Ross Procedure with mechanical/bioprosthetic aortic valve replacement in adults less than 60 years of age (EO 2016/2/260)

Applicant: Royal Melbourne Hospital and The University of Melbourne
Approval valid until: 01 July 2020

An aortic valve replacement (AVR) is the most commonly used technique to treat aortic valve disease, and prevent progression to heart failure and, in some cases, death. Prostheses, such as bioprostheses and mechanical valves, have historically been used as replacement valves. Bioprostheses have a functional capacity of approximately 15 years. Mechanical valves, on the other hand, despite being durable, require lifelong anticoagulation with medications such as Warfarin. Both bleeding and clotting complications have thus been linked to AVR with mechanical valves.

The Ross procedure—a more complex surgical technique—is an alternative approach that uses an individual’s pulmonary valve to replace the aortic valve; a homograft is fitted to replace the pulmonary valve. A prominent advantage of this procedure is that it results in an aortic valve that is living and capable of remodelling, and thus overcomes many of the limitations associated with both bioprosthetic and mechanical valves.

The objective of this study is to ascertain which of the available options for AVR—bioprostheses, mechanical valves, and the Ross procedure—are associated with the most optimal long-term survival outcomes.

A study cohort will be linked with the National Death Index (NDI) to obtain mortality data, which will be used as an index of long-term survival outcome.

The study findings could potentially improve survival for people with aortic valve disease.

Incidence of Type I Diabetes in Australian children before and after the introduction of Rotavirus Vaccine: A case-control linkage study (EO 2016/2/262)

Applicant: Murdoch Children’s Research Institute (MCRI)
Approval valid until: 30 June 2018

A large body of research has investigated microbiological and immunological links between viruses and the development of Type I diabetes. Conversely, little is known about whether early vaccination has any impact on the incidence of diabetes in young children.

In Australia, the oral rotavirus vaccine (ORV) was introduced to the routine National Immunisation Program (NIP) for all infants born from 01 May 2007. As an extension of the NIP, a project was undertaken to ascertain whether early infant vaccination against the rotavirus had any impact on the incidence of diabetes in young children. This project sought to examine whether the incidence of Type I diabetes in young Australian children would have decreased in the five years following the introduction of the vaccine.

The present investigation, a retrospective case-control study, will link data from the National Diabetes Services Scheme (NDSS), between 01 July 2002 and 01 July 2012, with the Australian Childhood Immunisation Register (ACIR).
Findings will establish whether rotavirus exposure is either a risk factor for, or a protective factor against, the onset of Type I diabetes in infant children, and help to reduce the burden of this disease among infants and their families.

Efficacy of breast cancer screening in Queensland (EO 2016/2/275)

Applicant: Princess Alexandra Hospital
Approval valid until: 30 December 2017

This study assesses the efficacy of mammographic screening, among Queensland women.

It has the following objectives:

• Determine the impact of mammographic screening on the rate of breast cancer mortality
• Examine whether the frequency of mammographic screening has an effect on the incidence of breast cancer mortality
• Establish the impact of mammographic screening and frequency of screening on the age-standardised incidence rate of late-stage breast cancer.

A study cohort will be obtained from the Queensland Oncology Repository (QOR), which comprises data from various sources, including the Queensland Cancer Registry and Deaths. The scope of the study cohort will be women, who were eligible for mammographic screening in 2000, drawn from the Queensland Electoral Commission.

Data from the study cohort will be linked with the Medicare Benefits Schedule (MBS) to establish attendance at breast cancer screening, and utilisation of related services, for women in the study cohort.

Findings will yield important information about the efficacy of mammographic screening in identifying women at risk of breast cancer, and those with existing tumours. This information can be used to progressively reduce rates of mortality associated with breast cancer among women.

Victorian Cerebral Palsy Register (EO 2016/3/131)

Applicant: Murdoch Children's Research Institute
Approval valid until: 01 November 2023

The Victorian Cerebral Palsy Register (VCPR) collects and compiles data about Victorian cerebral palsy patients.

This study has the following objectives:

• Ascertain survival rates of cerebral palsy patients 
• Monitor changes in survival rates 

VCPR data will be linked with the National Death Index to identify deceased patients.

Findings will further contribute to the existing body of knowledge about mortality, and causes of mortality, among cerebral palsy patients. This will assist healthcare professionals to improve the care of cerebral palsy patients.

Examining the association between correctional education and post-release mortality (EO 2016/3/220) 

Applicant: Edith Cowan University
Approval valid until: 22 December 2017

This study investigates the effect of correctional education on re-imprisonment rates, welfare dependency, and employment outcomes. Another objective is to examine whether correctional education reduces the risk of premature mortality.

A prisoner and ex-prisoner cohort will be linked with the National Death Index.

Results will have implications for reducing re-offending (and re-imprisonment) through enhancing ex-prisoners' assimilation into the community.

Clinical, pathological and molecular markers of disease aetiology and outcome in prostate cancer and prostatic diseases (EO 2016/3/256) 

Applicant: Garvan Institute of Medical Research
Approval valid until: 03 September 2021

Prostate cancer is the second leading cause of mortality among Australian men. Healthcare professionals have sought to gain a better understanding of the underlying molecular mechanisms.

This study aims to compile a large tissue resource, and related database, to provide the foundation for further investigation of the genetic basis of prostate cancer. Specific study objectives include:

• Assess molecular genetic abnormalities in biological samples
• Examine clinical and pathological factors as predictors of relapse
• Identify novel genes involved in the occurrence and subsequent disease progression

The study investigators seek mortality data to update patient records. A cohort will be linked with the National Death Index.

Study findings will enable healthcare professionals to target interventions more effectively, reducing mortality and improving quality of life. 

Does pneumococcal vaccination protect against cardiovascular disease? A randomised placebo-controlled double-blind trial (EO 2016/3/271) 

Applicant: University of Newcastle
Approval valid until: 01 February 2021

The growing incidence of cardiovascular disease has prompted healthcare professionals and policymakers to develop initiatives that reduce cardiovascular-related morbidity and mortality. One such initiative-the Australian Study for the Prevention through Immunisation of Cardiovascular Events (AUSPICE), a multi-centre clinical trial-investigates the effectiveness of the pneumococcal vaccine in reducing cardiovascular events.

As part of the AUSPICE study, data will be linked with the National Death Index, Australian Cancer Database, Medicare Benefits Schedule and Pharmaceutical Benefits Schedule.

The potential of the pneumococcal vaccine to protect against cardiovascular disease is of public health significance. Findings will pose implications for reducing cardiovascular-related mortality.

Deaths in young people involved in the youth justice system: Towards evidence-based prevention (EO 2016/3/280) 

Applicant: Griffith University
Approval valid until: 31 December 2019

This study investigates mortality among young people who have had contact with the Queensland Youth Justice System. In particular, it will examine the incidence and causes of premature deaths. Specific objectives include:

• Describe the incidence, timing, causes, context and risk factors for mortality among young people who had contact with the Queensland youth justice system between 1993 and 2014
• Identify key psychosocial risk factors, health morbidities, precipitating factors and service contacts for deceased individuals
• Identify specific interventions and policy reforms that have the potential to reduce mortality among juvenile offenders

A cohort containing individuals who had contact with the Queensland youth justice system between 1993 and 2014 will be linked with the National Death Index.

Study findings will inform policy and assist targeted interventions to reduce premature mortality among juvenile offenders. Furthermore, because young, Indigenous Australians are over-represented in the youth justice system, results will also assist policymakers and healthcare professionals to reduce the gap in life expectancy between Indigenous and non-Indigenous Australians.

Patterns of care in adolescents and young adults with cancer (EO 2016/3/283) 

Applicant: Cancer Council Victoria
Approval valid until: 31 December 2017

Young adult cancer patients typically display low survival rates. Researchers have attributed this poor prognosis to a multitude of factors, including patient, disease and healthcare factors. It should be noted that the delivery of young adult cancer services is often fragmented. Patients may receive treatment at either paediatric or adult facilities.

In response to growing mortality rates among young adult cancer patients, this study seeks to identify the modifiable health-system factors and practices that influence survival.

Data will be linked with the National Death Index.

Study findings will enable policymakers and healthcare professionals to improve survival rates for young adult cancer patients.

Risk and prognostic factors for glioma in Australia (the Australian Genomics and Clinical Outcome of Glioma—Epidemiology Study) (EO 2016/3/284) 

Applicant: University of New South Wales
Approval valid until: 01 February 2018

This project is a population-based, case-control, family study of adults with gliomas-cancers of the brain or spine-and unaffected family members. It will examine the contribution of environmental, lifestyle and occupational factors, and genetic variables to the development of gliomas. This project will also investigate the relationship between these variables and survival rates.

As part of this project, a cohort of adult glioma patients, diagnosed between 2013 and 2016, and unaffected family members, will be linked with the National Death Index and the Australian Cancer Database.

Gliomas have poor prognoses. Furthermore, there have been no prior family-based, case-control studies of gliomas. Through identifying potential risk factors for the onset of gliomas, findings will enable researchers and healthcare professionals to enhance disease prognosis and, ideally, prevent disease onset.

Impact of a multidisciplinary cardiac meeting on short- and long-term mortality outcomes of high-risk cardiac surgery patients (EO 2016/3/289) 

Applicant: Sydney South West Area Health Service - Liverpool
Approval valid until: 31 December 2026

Liverpool Hospital, in New South Wales, Australia, implemented a multidisciplinary cardiac meeting in 2008 to promote long-term survival outcomes of high-risk, cardiac patients.

This project-a retrospective, observational study-examines post-cardiac surgery mortality rates at one, three, five, seven, and ten years.

The Australian and New Zealand Society of Cardiac and Thoracic Surgeons (ANZSCTS) maintain a database of cardiac surgical procedures, and outcomes in Australia, with data from 28 hospitals. This database will be linked with the National Death Index to obtain mortality data for patients who underwent cardiac surgery between 2008 and 2015.

Study findings will provide important information about survival outcomes following cardiac surgery. Healthcare professionals can use this information to improve the management of cardiac patients, thereby enhancing surgical prognoses.

A National approach to measuring non-fatal crash outcomes (EO 2016/3/290) 

Applicant: Flinders University 
Approval valid until: 31 December 2017

Motor vehicle accidents, either fatal or non-fatal, place a significant burden on the healthcare system, and impose substantial financial demands on insurance providers. Australia's road safety agencies have thus attempted to reduce the incidence of motor vehicle accidents through a multitude of safe-driving initiatives. For these agencies to continue to improve road safety, they require up-to-date, national data about motor vehicle accidents that result in either fatal or non-fatal injuries.

The purpose of this study is to inform road safety policies and initiatives through the provision of up-to-date, national data about motor vehicle accidents, and related mortality.

State and territory motor vehicle accident data, and hospital records will be linked with the National Death Index.

Study findings will contribute to the improvement of road safety, and reduced mortality by informing road safety initiatives and enhancing the effectiveness of existing measures.

The Baker IDI Healthy Hearts Clinic (EO 2016/3/295) 

Applicant: Baker IDI Heart and Diabetes Institute 
Approval valid until: 01 September 2017

The Baker IDI Heart and Diabetes Institute has maintained a database of various cardiovascular risk and protective factors for over 15,000 patients.

This project investigates the relationship between various cardiovascular risk factors and mortality-both cardiovascular-related mortality and non-cardiovascular-related mortality.

Data will be linked with the National Death Index.

Healthcare professionals can utilise study findings to improve the detection of individuals at risk of cardiovascular events, reduce the incidence of such events by targeting risk factors, and prevent cardiovascular-related mortality.

A study of the epidemiology of systemic amyloidosis in Queensland (EO 2016/3/298) 

Applicant: Princess Alexandra Hospital, Queensland 
Approval valid until: 10 July 2017

Systemic amyloidosis is a rare condition. It is characterised by abnormal protein deposits in organs and tissues, which can lead to organ dysfunction and, in severe cases, mortality. Due to the rarity of systemic amyloidosis, little is known about its epidemiology.

The purpose of this study is to establish the incidence and prevalence of systemic amyloidosis. Additional study objectives include:

• Ascertain the impact of age on systemic amyloidosis-related mortality
• Ascertain the impact of geography and remoteness on systemic amyloidosis incidence and mortality

Study data will be linked with the National Death Index.

Study findings will provide much-needed information about the incidence and prevalence of systemic amyloidosis. Healthcare professionals can use this information to improve detection and management.

The National Data Linkage (Hospitals-MBS-PBS-NDI) Demonstration Project (EO 2016/3/307)

Applicant: AHMAC’s National Health Information and Performance Principal Committee (NHIPPC)
Approval valid until: 31 December 2018

This project brings together public hospital admitted patient and emergency department data from two jurisdictions, New South Wales and Victoria, with Medicare Benefits Scheme data, Pharmaceutical Benefits Scheme data and National Deaths Index data from 2010–11 to 2014–15.

These de-identified data are available to selected analysts nominated by the New South Wales Ministry of Health, the Victorian Agency for Health Information, the Australian Government Department of Health and the AIHW.

The data are used for analyses related to topics such as:

• Patterns of use of healthcare services
• Quality and safety of services provided
• Chronic disease management—patterns of service provision
• Risks to particular patient cohorts and patterns of health service use.

It is planned that the project will be evaluated in 2018 and a report of the evaluation provided to AHMAC in early 2019.

SCREEN-HFL (SCReening Evaluation of the Evolution of New Heart Failure)—a Longitudinal Study (EO 2016/4/241) 

Applicant: Monash University
Approval valid until: 31 December 2019

Chronic heart failure has been linked to poor quality of life and, in many cases, premature mortality. In response to the immense burden of disease posed by chronic heart failure, the Screen-HFL, a longitudinal study, was developed. This study examined the extent to which NT-proB-type Natriuretic Peptide (NT-proBNP), a bloodborne substance, was a risk factor for chronic heart failure.

The present study has the following objectives:

• Determine whether patients with high levels of NT-proBNP are more likely to develop chronic heart failure than patients with low levels of NT-proBNP
• Determine the incidence of new heart failure, hospitalisations for heart failure, hospitalisations for cardiovascular causes, total hospitalisations, mortality, heart attack and stroke in patients with high levels of NT-proBNP compared to patients with low levels of NT-proBNP.

SCREEN-HF data will be linked with the National Death Index.

Findings will enhance the early detection of individuals at risk of chronic heart failure. Healthcare professionals can target interventions appropriately to improve quality of life and reduce premature mortality.

Improving the health of Indigenous and non-Indigenous ex-prisoners in Australia (HiP-Aus Study) (EO 2016/4/281) 

Applicant: University of Western Australia
Approval valid until: 31 December 2022

A 2011 study found that the annual mortality rate among recently released Australian offenders was approximately 10 times higher than that of incarcerated offenders.

The present study will, for the first time, examine health-related predictors of mortality among ex-prisoners.

A study cohort will be linked with the National Death Index.

Findings will inform evidence-based interventions to reduce ex-prisoner mortality.

Perioperative mortality and morbidity prediction: Application of National Surgical Quality Improvement Program (NSQIP) online calculator and Surgical Outcome Risk Tool (SORT) to neck of femur fracture surgical management (Retrospective multicentre study) (EO 2016/4/282) 

Applicant: Royal North Shore Hospital
Approval valid until: 31 July 2021

This study investigates surgical outcomes among neck of femur fracture patients. A long-term objective is to predict risk of adverse outcomes. Researchers will use two online, peri-operative risk assessment tools-the NSQIP (National Surgical Quality Improvement Program, a US online risk calculator) and the SORT (Surgical Outcome Risk Tool, a UK-based instrument)-to meet this long-term objective. Researchers will also compare predicted morbidity and mortality with observed events.

A patient cohort will be linked with the National Death Index to obtain mortality data at 30-days post-surgery. Researchers will compare NDI mortality data with predicted mortality to establish the accuracy of the risk assessment tools.

Findings will inform the accuracy of the NSQIP and SORT. Findings will also facilitate the detection of patients at risk of post-operative complications. Healthcare professionals can target interventions to reduce the likelihood of post-surgical mortality, and other complications.

Australian Breakthrough Cancer Study—Linkage to National Death Index and National Cancer Statistics Clearing House (EO 2016/4/301) 

Applicant: Cancer Council Victoria
Approval valid until: 31 December 2026

The Australian Breakthrough Cancer (ABC) study, an ongoing prospective investigation, aims to predict an individual's risk of cancer. The study examines the interaction between lifestyle and genomic factors, including the identification of genes involved in cancer formation.

ABC study data will be linked with the National Death Index (NDI) and Australian Cancer Database (ACD). NDI data will provide important mortality information; ACD data will identify those diagnosed with cancer.

Findings will facilitate early detection of cancer risk, targeted interventions and screening, and reduced mortality.

Balloon Aortic Valvuloplasty: Patients, procedures and outcomes before and during the transcatheter heart valve era (EO 2016/4/306) 

Applicant: Prince Charles Hospital/University of Queensland
Approval valid until: 31 December 2017

Degenerative aortic valve stenosis (AS) is the most common form of valvular heart disease. In severe cases, it has been linked to premature mortality. Corrective surgery is the standard treatment for AS. This, however, may not be suitable for 25 to 50 per cent of cases, due to multiple co-morbidities. In these instances, health professionals can utilise an alternative intervention-Balloon Aortic Valvuloplasty (BAV)-as a palliative approach. BAV can also be utilised as a pre-treatment option for transcatheter aortic valve implantation (TAVI).

A paucity of research has examined the effectiveness of BAV. This study investigates the effectiveness of BAV as a palliative procedure, and its utility as a pre-treatment option for TAVI.

A BAV patient cohort will be linked with the National Death Index.

Findings will provide much-needed information about the effectiveness of BAV as a palliative procedure for patients with inoperable aortic stenosis.

Data linkage - NDI and RPAH Diabetes Centre Database (EO 2016/4/310)

Applicant: Diabetes Centre, Royal Prince Alfred Hospital
Approval valid until: 01 June 2017

In recent years, adult obesity rates and, in particular, those in young adults have increased significantly. Obesity has been linked to adverse health outcomes-cardiovascular disease, type II diabetes and, in severe cases, mortality. Furthermore, type II diabetes is highly prevalent among young adults.

This study aims to identify clinical risk factors for mortality among young adult type II diabetes patients. Another objective is to determine whether these risk factors differ from those associated with mortality among adult type II diabetes patients, and type I diabetes patients.

In this study, the Royal Prince Alfred Hospital Diabetes Centre, in collaboration with the University of Sydney, wish to link their database-a register of over 31,000 patients-with the National Death Index.

Findings will enhance early identification of young adults at risk of type II diabetes. Healthcare professionals can target interventions to reduce adverse health complications, and improve quality of life.

The Health Science Alliance (HSA) Biobank (EO 2016/4/313)

Applicant: University of New South Wales
Approval valid until: 20 January 2022

The HSA Biobank, an initiative of the South Eastern Sydney Local Health District and University of New South Wales, is an ongoing collection of tumour banking and health data. Approximately 2,500 participants from all cancer types have been recruited, with ongoing recruitment. Samples and data are usually made available to third party researchers for projects with approval from an accredited Human Research Ethics Committee.

HSA Biobank data will be linked with the National Death Index. This will enable researchers to examine important questions such as the association of specific clinical and molecular features of cancer on survival. Research of this nature improves the understanding of cancer aetiology, and markers of diagnosis and treatment outcomes.

Women's Healthy Ageing Project (EO 2016/4/318)

Applicant: University of Melbourne
Approval valid until: 01 December 2019

The Women's Healthy Ageing Project (WHAP) is a longitudinal, prospective study of the health and well-being of Australian women. The WHAP collects data about lifestyle, quality of life, social connectedness, and cognitive decline. A primary objective is to identify cardiovascular, cognitive and lifestyle risk factors for mortality. The WHAP initially followed a middle-aged cohort. These women are now aged over 70 years.

The WHAP cohort will be linked with the National Death Index to examine relationships between neurological functioning, lifestyle factors, cardiovascular disease, and mortality.

Findings will identify risk and protective factors for mortality. Healthcare professionals can utilise this information to promote healthy ageing among women.

A cardiogeriatric model of care: Prospective assessment of a new method of care for elderly patients admitted with heart failure (EO 2016/4/328)

Applicant: Department of Cardiology, Western Health, Victoria
Approval valid until: 30 November 2017

Heart failure is a significant health concern. It is a prominent cause of mortality for children and adults and, in particular, the elderly. Western Health in Victoria, Australia established a cardio-geriatric unit to meet the health care needs of elderly heart failure patients. Within this unit, under a multidisciplinary care model, a cardiologist and geriatrician review patients' cardiovascular functioning. Patients also access additional cardiology services.

A Western Health patient cohort will be linked with the National Death Index. This will enable researchers to evaluate the effectiveness of interventions in reducing mortality among elderly heart failure patients.

Life expectancy of patients with Floppy Eyelid Syndrome (EO 2016/4/329)

Applicant: Royal Victorian Eye and Ear Hospital
Approval valid until: 31 December 2017

Floppy Eyelid Syndrome (FES) is a rare condition resulting in sticky discharge and watering from the eye(s), droopiness of the upper eyelid(s) and, in some instances, reduced vision due to corneal damage. FES is strongly associated with Obstructive Sleep Apnoea, a debilitating condition linked to reduced life expectancy.

There are no published studies investigating life expectancy among FES patients. This study investigates premature mortality, and life expectancy, among FES patients. Data will be linked with the National Death Index.

Findings will have implications for enhancing FES patients' quality of life.

Improving joint replacement outcomes in Australia (EO 2016/4/316)

Applicant: University of South Australia
Approval valid until: 31 December 2025

Joint replacements are one of the most common elective procedures in Australia. The Australian Orthopaedic Association (AOA) maintains the National Joint Replacement Registry (NJRR). This registry contains information about joint replacement procedures undertaken, including surgical outcomes such as revision surgery, and mortality. The AOR, through the NJRR aims, as its key objective, to identify factors that contribute to both poor and successful prognoses following joint replacement surgery.

AIHW previously linked the NJRR with the National Death Index. This linkage provided important information about deceased NJRR individuals.

As part of the current linkage, the NJRR will be linked with the Medicare Benefits Schedule and Pharmaceutical Benefits Schedule. The AOA will also access hospital data from state linkage units. Findings will enable the AOA to monitor a wider range of surgical outcomes. This will enable healthcare professionals to target interventions, enhance surgical outcomes, and reduce mortality.

Establishing high quality, integrated data for chronic disease management plans and secondary prevention medications and their effectiveness for patients after stroke: A substudy of STAND FIRM (EO 2016/4/325)

Applicant: Monash University
Approval valid until: 31 December 2019

Approximately 50,000 Australians suffer a stroke each year. STAND FIRM, a research initiative, was designed to assist General Practitioners to manage stroke-related risk factors, and reduce stroke prevalence. STAND FIRM has recruited 570 stroke patients, randomly allocated to receive either an individualised management plan or standard care.

The STAND FIRM cohort will be linked with the National Death Index, Medicare Benefits Schedule and Pharmaceutical Benefits Schedule to meet the following objectives:

• Describe the uptake of chronic disease management plans within 12 and 24 months after a stroke
• Evaluate the effectiveness of chronic disease management plans, based on health outcomes (e.g., rates of hospitalisation, and mortality)
• Evaluate the effectiveness of secondary prevention medications

Findings will enable healthcare professionals to improve the management of stroke patients, and reduce the associated burden of disease.

Quantifying the Burden of Systemic Sclerosis in Australia; From Data Linkages to Patient-Reported Outcomes.  (EO 2013/4/38) 

Applicant: St Vincent's Hospital Melbourne
Approval valid until 1 July 2016

Australia has one of the highest prevalence rates of Systemic Sclerosis (SSc) worldwide.  SSc is arguably the most devastating of the rheumatological diseases, with a potential to irreparably damage multiple organ systems and shorten life expectancy by an average of two decades.  Data linkage will be undertaken between the Australian Scleroderma Cohort Study, the Australian Cancer Database and the Medicare Benefits System to analyse the use of health services.  This research will inform allocation of resources, with the ultimate goal of improving patient outcomes and reducing the financial and human costs of this complex chronic disease.

Formation of a study roll for military and veteran research.  (EO 2014/4/139) 

Applicant: Department of Veterans Affairs
Approval valid until 31 December 2021

The purpose of this project is to generate a database (Study Roll) of contact and demographic information for potential serving and ex-serving participants in specific health research projects undertaken by the Department of Defence and Department of Veterans' Affairs.  In particular, the Study Roll is intended to facilitate recruitment of participants, avoid duplication of data collection and reduce risk of survey fatigue, for two major research programmes commencing in 2015.  The Roll will be kept by the AIHW, which will ensure the confidentiality of research participants is maintained.

Estimation of incidence of suicide in Australian Defence Force Personnel.  (EO 2014/4/144) 

Applicant: Australian Institute of Health and Welfare
Approval valid until 31 December 2022

There has been ongoing community concern around the issue of suicide within the veteran community and, in particular, of veterans of more recent conflicts.   However, there is a paucity of statistical evidence on suicide in the Australian veteran community.

The Department of Veterans Affairs (DVA) is generally only made aware of a veteran's suicide where a dependant lodges a claim after the death of a veteran.   The Department of Defence (Defence) keep only active records of current employees and is only aware of a death (including suicide) where the member is a current employee.  This leaves a large group of veterans about whom neither DVA nor Defence have any data.

The research involves linking ComSuper data to the National Death Index to obtain data and all causes of death to estimate the number and prevalence of suicide among the recorded deceased ADF personnel since 1990.  This research will provide a better understanding of the prevalence of suicide in the wider veteran community.

Improving the detection of disadvantaged Australians at high risk of heart disease and stroke.  (EO 2015/1/142) 

Applicant: Baker IDI Heart and Diabetes Institute
Approval valid until 31 December 2023

Risk prediction tools are commonly used to detect individuals at high risk of heart disease and stroke who may benefit from preventive treatment.  However, current risk tools in Australia do not take into account the independent risk associated with a lower social  economic status, resulting in reduced prioritisation of preventive treatment among individuals who need it most.  This study proposes to use pooled Australian cohort data to develop an Australian risk prediction tool for identifying individuals at high risk of developing heart disease and stroke, which will include a measure of social deprivation.  Improved assessment and intervention for disadvantaged Australians may reduce unnecessary cardiovascular events and premature deaths as a result of unfair and ineffective risk estimation, and thereby reduce disparities in cardiovascular disease within Australia.

This study does not involve further data linkage, but requires access to de-identified data already linked for the Australian and New Zealand Diabetes and Cancer Cohort (EC 2011/2/15).

A multi-centre retrospective observational study to evaluate whether acute hyperglycaemia during critical illness identifies survivors at risk of subsequently developing type 2 diabetes.  (EO 2015/1/146)

Applicant: Royal Adelaide Hospital
Approval valid until 8 March 2022

Approximately 50% of patients without a history of diabetes develop increased blood glucose concentrations when they are critically unwell in an intensive care unit (ICU). It is thought that this hyperglycaemia resolves completely as their condition improves. The researchers suspect that this episode of high blood glucose may identify a population that is at an increased risk of subsequently developing type 2 diabetes.

The aim of this project is to collate patient and hospital data (including blood glucose levels) from the four major public ICUs in South Australia for all patients admitted between 2004-2011 (~20,000 patients).  Linkage of this data with the National Diabetes Service Scheme and National Death Index databases will be undertaken, which  will allow the researchers to describe the incidence of subsequent diabetes in those patients with and without high blood sugar levels during their critical illness.  If the results indicate that patients with high blood glucose levels more frequently develop diabetes after ICU then screening this group and/or consider targeted diabetes prevention programs will be suggested.

Treatment challenges in diabetes: A study of over one million people with diabetes.  (EO 2015/1/148)

Applicant: Baker IDI Heart and Diabetes Institute
Approval valid until 26 January 2025

The purpose of this study is to create a dataset of over a million people with diabetes with information on multiple outcomes (Alzheimer’s disease (AD) and end-stage kidney disease (ESKD), and mortality) that will be able to address the following aims:

1. To examine the relationship between diabetes, diabetes medication and important outcomes, such as ESKD and AD
2. To investigate inequalities in numbers and types of drugs for diabetes across socio-economic strata (defined by Accessibility/Remoteness Index of Australia (ARIA) and Socio-Economic Indexes for Areas (SEIFA).
3. To explore the relationship between the uptake of diabetes education at a regional level (statistical local area) and the prescription of novel therapeutic agents in the treatment of Type 2 diabetes.

Data linkage between the National Diabetes Service Scheme (NDSS) to the Pharmaceutical Benefits Scheme database (PBS), the Repatriation Pharmaceutical Benefits Scheme database (RPBS), the National Death Index (NDI), and the ANZDATA (Australia and New Zealand Dialysis and Transplant Registry) will be undertaken.

Assessing guideline compliance of referral for, and uptake of, diabetic retinopathy screening.  (EO 2015/1/150)

Applicant: Melbourne University
Approval valid until 31 December 2022

People with diabetes are at risk of developing ocular complications which could lead to vision loss and blindness. About 75% of persons will have diabetic eye disease after 20 years. In order to avoid vision loss every person with diabetes should be screened regularly for ocular complications. Diabetic retinopathy (DR) screening is readily available in Australia, however severe vision loss due to complications can only be avoided if it is utilised. A recent pilot study conducted in Melbourne suggests that compliance for the National Health and Medical Research Council DR screening guidelines is very low. For example, NHMRC guidelines advise immediate referral for an eye screening upon diagnosis of diabetes type 2. However, the study found that the mean delay between diagnosis and first referral is three years and it is suspected that low compliance extends to the wider population.

Data linkage between the Medicare Benefit Scheme (MBS) and Pharmaceutical Benefit Scheme (PBS) will be undertaken to investigate referral practices, specifically the time delay between patients with a diagnosis for diabetes and subsequent consultation with an eye-care specialist.

Incidence and Survival after Acute Myocardial Infarction, Northern Territory 1992 to 2014.  (EO 2015/1/153)

Applicant: Northern Territory Department of Health
Approval valid until 31 March 2015

Information on incidence and prevalence of Acute Myocardial Infarction (AMI) will improve understanding of the health status of NT Indigenous and non-Indigenous people and fills a much needed information gap in Cardiac service delivery and planning. This information will inform resource allocation and program evaluation, and support improved service delivery by providing:

• An understanding of the current trend of incidence and survival for AMI patients;
• An understanding og the demographic and health characteristics affecting survival after AMI
• Information to health professionals and policy makers for planning services for ischaemic heart disease.

The study will investigate the mortality, incidence and survival associated with AMI for people in the Northern Territory (NT) in the period 1992-2014. This includes constructing a study cohort from Hospital separations and deaths data from the local registry of births, deaths and marriages (BDM), and Coroner's data; the cohort will have the scope of all NT residents who have had an AMI (identified by hospital diagnosis or cause of death). Further data linkage of this cohort to the National Death Index will be undertaken to identify AMI patients who have died interstate and confirm local data.

From the linked data-set of all AMI patients and related deaths, the AMI incidence rates (including time trends) for the NT population and survival rates for NT AMI patients will be calculated.

Effects of opioid substitution therapy on health service use of people with opioid use  (EO 2015/1/154)

Applicant: National Drug and Alcohol Research Centre (NDARK)
Approval valid until 28 February 2025

The purpose of this project is to assess reasons for, and trends in, emergency department attendance and hospitalisation among people with opioid use disorders, and determine the impacts of opioid substitution therapy (e.g. methadone maintenance treatment) on  these.

It is a retrospective, longitudinal data linkage study, using data from NSW opioid treatment, emergency department and hospital databases, and the National Death Index.  As well as identifying the base cohort of people with opioid use disorders, the study will involve analysis of two matched comparison cohorts: one of people without opioid use disorders attending emergency departments (ED comparison cohort), and one of people without opioid use disorders who are hospitalised (hospital comparison cohort).

The aims of the project are to compare health service use of people with and without opioid use disorders; and to measure the impact of opioid substitution therapy on health service use, and associated costs of people with these disorders.
In order to determine mortality and calculate time at risk for hospitalisation, data linkage will be undertaken to link the three study cohorts with the National Death Index to obtain date and all causes of death, and year and state/territory of death registration. 

This project will contribute to an understanding of emergency department attendance and hospitalisation of people with opioid use disorders, and the potential impacts of opioid substitution therapy in reducing emergency department attendance and hospitalisation of this population. Findings will assist the estimation of costs associated with opioid use disorders, and development of a cost savings model of opioid substitution therapy.

Transition and Wellbeing Research Programme: Impact of Combat  (EO 2015/1/161)

Applicant: University of Adelaide
Approval valid until 31 March 2032

The Impact of Combat Study is a follow-up study, which will enable comparison of health outcomes for a group already tested under the Military Health Outcomes Program (MilHOP) and serve as a time point in the longitudinal surveillance of the Middle East Area of Operations (MEAO) Prospective Study cohort. The MEAO Prospective Study was a Defence commissioned research project investigating the health of ADF members deployed to the MEAO between 2010 and 2012. The Impact of Combat Study aims to examine the longitudinal trajectory of, and risk and protective factors for, mental physical, and social health and wellbeing in this cohort.

In order to recruit participants, the researchers are requesting access to the contact details of the cohort from the Study Roll for Military and Veteran Research following the processes approved by the Ethics Committee for the roll (EO2014/4/149). Details will be provided for all those identified as (a) having participated in any aspect of the Middle East Area of Operations (MEAO) Prospective Health Study, (b) having previously provided consent to be contacted for future research, and (c) still living (ascertained from linkage with the National Death Index). Initial contact with participants will be made via an introductory email from the Centre for Traumatic Stress Studies (CTSS) with links to the invitation package, contained on a secure website.  Demographic data will also be provided for consenting participants to facilitate the study and for further analysis.

All eligible participants who completed a pre-deployment survey as part of the MEAO Prospective Study will be invited to complete a survey and participate in a structured diagnostic interview as part of the current investigation. Participants who were previously identified as having engaged in high-risk roles, and who underwent neurocognitive and/or biological testing as part of the MEAO Prospective Study, will also be invited to do so again. A further subgroup identified as having probable mild traumatic brain injury will in addition be targeted to undergo MRI testing.

This study has several benefits. Firstly, results will form the basis on an ongoing longitudinal study to identify trends in client needs and predictors of these trends. Secondly, the project will identify psychosocial factors that should be considered in treatment, as well as investigating barriers and pathways to care. Thirdly, the project will identify physical, mental health and cognitive factors that should be considered in treatment, as well as investigating barriers and pathways in a high-risk group. By understanding the impact of military service, deployment experience and the associated health outcomes of ex-service and currently serving ADF members, health providers will be able to better meet the needs of contemporary veterans.

Transition and Wellbeing Research Programme: Mental Health and Wellbeing Transition Study  (EO 2015/1/162)

Applicant: University of Adelaide
Approval valid until 31 March 2032

The Mental Health and Wellbeing Transition Study will provide a comprehensive picture of the mental health and wellbeing status of contemporary veterans as well as particular subgroups within the Australian Defence Force (ADF). Additionally it will examine the trajectory of disorder and pathways to care for individuals previously diagnosed with a mental health disorder as part of the 2010 ADF Mental Health Prevalence and Wellbeing study (MHPWS). The 2010 ADF MHPWS was a Defence commissioned investigation of the prevalence of mental disorder among the entire ADF. To achieve the aims of the Mental Health and Wellbeing Transition Study, five overlapping cohorts will be targeted for survey data collection. These are:

• All ADF members who have transitioned from regular ADF since 2010.
• Ab initio Reservists cohort: A representative sample of 2015 Ab initio ADF Reservists (those reservists who have only ever been reservists within the ADF).
• A representative sample of currently serving regular ADF members who are serving in 2015.
• Approximately 25,000 regular ADF personnel who participated in previous related studies.
• MHPWS CIDI cohort: All eligible MHPWS personnel who were interviewed using the CIDI in 2010 (originally 2,685).

To recruit participants, the researchers are requesting access to the contact details of the cohort from the Study Roll for Military and Veteran Research following the processes approved by the Ethics Committee for the roll (EO2014/4/149). Details will be provided for all those identified as (a) a member of one of the above five cohorts; (b) either not having participated in previous research, or else having participated previously and provided consent to be contacted for future research; and (c) still living (after linkage with the National Death Index). Initial contact with participants will be made via an introductory email from the Centre for Traumatic Stress Studies (CTSS) with links to the invitation package, contained on a secure website. CTSS also requests demographic data for consenters to facilitate the study and for further analysis.

The study aims to analyse the physical health status of current and ex-service ADF personnel, to determine the prevalence of mental health disorders among transitioning ADF members, to assess pathways to care for these groups and to examine the factors that contribute to the current wellbeing of currently-serving and ex-serving ADF personnel. 

The study involves a questionnaire, interview and, for a sub group of participants, neurocognitive tests.

A critical period in optimising the health of ex-ADF personnel is in the first two years following discharge from service due to the need to re-establish/connect with helpful providers in the civilian sector. Unfortunately, the civilian sector often has little understanding of the relevance or nature of ADF service, leaving ex-serving ADF personnel in a vulnerable position. It is hoped that this study will create community awareness among health professionals about the particular group and the importance of identifying those who have previously worked in the military. By understanding the impact of military service deployment experience and the associated health outcomes of ex-service and currently serving ADF members, health providers will be able to better meet the needs of contemporary veterans.

Seeding Success: Identifying factors that contribute to positive early childhood health and development in Aboriginal children (EO 2015/2/141)

Applicant: University of New South Wales
Approval valid until: 22 May 2019

Past studies have found that early, adverse experiences predict poor, developmental outcomes among Indigenous and non-Indigenous Australian children.

This study attempts to:

• Identify which perinatal, social and early childhood health factors predict developmental outcomes, from birth to school age, for Indigenous and non- Indigenous children.
• Determine whether Indigenous and non-Indigenous children differ in the extent to which these variables predict developmental outcomes.
• Assess the effectiveness of two early childhood programs in promoting optimum early developmental outcomes for Indigenous children.

A study cohort will be drawn from the Seeding Success cohort-a large, linked dataset that contains data from multiple sources including: Australian Early Development Census; NSW Perinatal Data Collection; NSW Emergency Department Data Collection; NSW Register of Congenital Conditions; NSW Mental Health Ambulatory Data Collection.

The study cohort will be linked with the National Death Index (NDI), Medicare Benefits Schedule (MBS), and Centrelink Income Assistance Data for Family Tax Benefit A (FTBA).

Findings will inform health initiatives to maximise developmental trajectories for Indigenous and non-Indigenous children.

Mortality after first-ever seizure (EO 2015/2/152)

Applicant: Royal Perth Hospital
Approval valid until: 30 December 2016

Studies have investigated mortality rates among epilepsy patients (those with histories of two or more seizures). Mortality rates of patients with a first-ever seizure (those with a history of a single seizure), however, have been under-investigated.

This study aims to identify mortality rates of patients with first-ever seizures, and compare these to the general population.

It will draw a cohort from the Royal Perth Hospital (RPH) First Seizure database, a collection comprising approximately 1,500 patients who attended the RPH First Seizure Clinic since 2000.

To enable comparison of mortality rates between individuals with a first-ever seizure and the general population, a control group will be randomly selected from the electoral roll, and birth records, in Western Australia.

Both cohorts will be linked with the National Death Index (NDI).

Health practitioners can use study findings to better meet the needs of first-ever seizure patients.

The better cardiac care data linkage project (EO 2015/2/155)

Applicant: NSW Ministry of Health
Approval valid until: 20 July 2016

The Better Cardiac Care project, a national health initiative, designed to improve the cardiac health of Indigenous Australians, was developed in response to disparities in cardiac care between Indigenous and non-Indigenous individuals.

Key priorities include: early cardiovascular risk assessment and management; timely diagnosis of heart disease and heart failure; guideline-based therapy for acute coronary syndrome.

This study will address these priorities by linking data with ACT and NSW emergency department data, National Death Index (NDI) and Medicare Benefits Schedule (MBS).

Findings will contribute to the improvement of the delivery of health services, equity of access, and the care and management of Indigenous and non-Indigenous patients with cardiovascular conditions.

Relationship of external cause of death of residents in Residential Aged Care Services (nursing homes) in Australia to an individual's function performance as recorded in the Aged Care Funding Instrument (EO 2015/2/174)

Applicant: Monash University
Approval valid until: 31 March 2017

Australia's ageing population has contributed to an increasing number of premature deaths from preventable causes (e.g., injuries from falls).

This study will link data from the National Death Index (NDI) with the Aged Care Funding Instrument (ACFI), a tool that assesses the level of care required by people in aged care.

Findings will identify risk factors for premature deaths among elderly Australians.

A BOLD new model for chronic non-specific respiratory disease to enable better research, prevention, treatment and outcomes (EO 2015/2/178)

Applicant: Woolcock Institute of Medical Research
Approval valid until: 31 December 2022

Respiratory complications are a major burden of disease, and a leading cause of mortality.

This study is a longitudinal investigation of 541 adults, randomly selected from the electoral roll, whose lung functioning and risk of developing lung disease was assessed.

An objective is to identify risk factors for the development of lung disease.

This study will link a cohort with the National Death Index (NDI) to identify respiratory disease-specific mortality.

Quantifying the Burden of Systemic Sclerosis in Australia: From data linkages to patient-reported outcomes (EO 2013/4/38)

Applicant: St Vincent's Hospital Melbourne
Approval: 01 July 2016

This study investigates the burden of disease associated with systemic sclerosis (SSc), a highly debilitating rheumatological disease.

Australian Scleroderma Cohort Study (ASCS) data will be linked with hospital and ambulatory care data, and the Australian Cancer Database (ACD).

Data will also be drawn from the Medicare Benefits Schedule (MBS) to establish the number and type of ambulatory health services utilised by patients in the ASCS dataset.

Data from the ASCS will also be linked, via state linkage nodes, with SA, WA and TAS Hospital and Emergency Department data.

Findings will be used to improve outcomes for SSc patients, and reduce the associated burden of disease.

15 year quality of life, survivorship and survival outcomes for prostate cancer, NSW Prostate Cancer Care and Outcomes Study (PCOS15) (EO 2015/3/171)

Applicant: Cancer Council NSW
Approval: 01 June 2020

The NSW Prostate Cancer Care and Outcomes Study (PCOS) investigated prostate cancer patients' survival experiences.

The current study-the PCOS15-is a follow-up investigation that will analyse and model prostate cancer patients' survival experiences.

The PCOS cohort will be linked with the National Death Index (NDI) to obtain mortality information for deceased patients.

Findings will identify prostate cancer patients at risk of poor outcomes (e.g., treatment side-effects and early mortality), and inform care and management policies.

Mortality and discharge destination in patients older than 80 years referred to a tertiary intensive care service (EO 2015/3/176)

Applicant: The Canberra Hospital
Approval: 01 September 2016

Australia's rapidly ageing population continues to place substantial demands on hospital resources. There has been a rise in the number of general hospital admissions and, in particular, ICU admissions for elderly patients.

Studies have investigated health outcomes of patients, aged over 80 years, and who are admitted to ICU. However, little is known about the outcomes of those patients who are declined ICU admission because they are either too well or too sick.

This study draws data from an intensive care referral database. It will be linked with the National Death Index (NDI).

Findings should improve the match between elderly patients' treatment needs and ICU resources.

Somatic comorbidities and mortality in epilepsy - A data linkage approach (EO 2015/3/177)

Applicant: Melbourne University
Approval: 30 June 2020

This project investigates risk factors, comorbidity, and premature mortality among epilepsy patients. It will identify prevalence and risk of, neoplasms, and patterns of anticonvulsant drug use.

The study cohort will consist of a community-based cohort, drawn from the Tasmanian Epilepsy Register (TER) and a hospital outpatient sample, which will be sourced from the St. Vincent's Hospital Epilepsy Clinical Database (SVHECD). 

The cohort will be linked with the National Death Index (NDI), Australian Cancer Database (ACD), and Pharmaceutical Benefits Schedule (PBS).

Findings will enable researchers to identify specific epilepsy-related factors that may contribute to premature mortality and somatic comorbidity.

Cause of death for living kidney donors and people with End Stage Kidney Disease (ESKD) in Australia and New Zealand; a data linkage study (the CELESTIAL study) (EO 2015/3/181)

Applicant: University of Sydney
Approval: 30 September 2019

This study uses a cohort drawn from the Australian and New Zealand Dialysis and Transplant (ANZDATA) Registry.

The ANZDATA Registry contains records of Australian and New Zealand patients with End Stage Kidney Disease (ESKD), who are receiving dialysis treatment or who have had a kidney transplant.

This study will examine changes in mortality rates and cause of death among ESKD patients, compared to the general population. It will also analyse the effect of different treatment modalities on mortality rates.

The ANZDATA Registry will be linked with the National Death Index (NDI). The Living Donor Kidney Registry-a kidney donor registry-will also be linked with the NDI.

Findings will pose implications for the treatment and management of ESKD.

Health outcomes and service utilisation in a cohort of people who inject drugs, sex workers and 'at risk' young people - a record linkage study (EO 2015/3/186)

Applicant: University of New South Wales
Approval: 31 December 2017

This study assesses the health outcomes and service utilisation of a population cohort (N = 55,000) of injecting drug users and sex workers.

The population cohort will be linked with National HIV and AIDS Registries, the National Death Index (NDI), Medicare Benefits Schedule (MBS), and Pharmaceutical Benefits Schedule (PBS).

Findings will guide and inform health outcomes for this particularly vulnerable population cohort.

Assessing the mental health outcomes and socioeconomic burden associated with child sexual abuse (EO 2015/3/191)

Applicant: Swinburne University
Approval: 31 December 2018

This study examines child sexual abuse survivors' developmental trajectories.

A database of child sexual abuse victims, which the Victorian Institute of Forensic Medicine (VIFM) collated between 1964 and 1994, and a control group drawn from the Australian Electoral Commission (AEC) will be linked with the Medicare Benefits Schedule (MBS), Pharmaceutical Benefits Schedule (PBS), and the National Death Index (NDI).

Findings will inform health policies, designed to assist survivors of child sexual abuse.

Mortality, disability and life expectancy of people with diabetes: A national Australian registry-based cohort study (EO 2015/3/195)

Applicant: Baker IDI Heart and Diabetes Institute
Approval: 01 August 2019

In 2011, a study was undertaken to establish cancer prevalence and mortality rates among diabetes patients, compared to the general population. This study linked the National Diabetes Service Scheme (NDSS) with both the Australian Cancer Database (ACD) and the National Death Index (NDI).

The current investigation will analyse this linked dataset to obtain mortality estimates and life expectancy among diabetes patients, compared to the general population. The study will also examine the effect of disability on life expectancy.

Health professionals can use study findings to enhance quality of life among diabetes patients.

Comparison of fact and cause of death between ANZDATA and NDI (EO 2015/3/199)

Applicant: ANZDATA Registry
Approval: 01 October 2017

The ANZDATA Registry contains records of Australian and New Zealand End Stage Kidney Disease (ESKD) patients, who are receiving dialysis treatment or who have had a kidney transplant.

As part of the CELESTIAL study, ANZDATA records were linked with the National Death Index (NDI).

The current study will use CELESTIAL study findings to compare NDI and ANZDATA cause of death codes, as the latter contains different cause of death categories.

Findings should enable health professionals to promote and maintain ESKD patients' quality of life, through a better understanding of ESKD mortality.

Linkage of the RFPCS and EOPCFS prostate cancer studies to the National Death Index (EO 2015/4/124)

Applicant: Cancer Council Victoria
Approval: 01 January 2026

This study aims to identify modifiable risk factors for prostate cancer, such as cigarette smoking, body mass index, and diet.

Epidemiological data will be linked with the National Death Index (NDI).

Findings will provide much needed information about risk factors for prostate cancer. Health professionals can use this information to enhance quality of life among prostate cancer patients.

Does continuity of primary care reduce demand on emergency department presentations and hospital admissions (EO 2015/4/192)

Applicant: Curtin University
Approval: 01 November 2018

This study examines the influence of primary care contact on emergency department visits.

It has the following objectives:

• Investigate the impact of primary care contact on emergency department visits.
• Examine the effect of primary care contact on costs related to emergency department visits and potentially preventable hospitalisations.
• Identify socio-demographic and clinical predictors of primary care contact patterns.

A study cohort will be linked with WA Hospital and Emergency Department data, the Medicare Benefits Schedule (MBS), and the National Death Index (NDI).

Enhancing the accuracy of heart disease risk assessment in Indigenous Australians (EO 2015/4/193)

Applicant: Menzies School of Health Research
Approval: 01 July 2022

Cardiovascular disease is a leading cause of mortality among Indigenous Australians.

This study will investigate cardiovascular disease mortality rates among Indigenous Australians. A cohort of Indigenous individuals and non-Indigenous controls will be linked with the National Death Index (NDI).

Findings will improve the detection and management of cardiovascular disease among Indigenous Australians.

Cancer survivors and support persons' preferences for care: A discrete choice experiment (EO 2015/4/203)

Applicant: University of Newcastle
Approval: 31 December 2017

This study examines cancer survivors' and their support persons' preferences for various forms of care (e.g., psychosocial care, peer support, caregiver roles). Another aim is to assess the extent to which demographic characteristics (e.g., sex, age and cancer type) account for different preferences between patients and their support persons.

Findings will guide health care policy, and lead to improvements in cancer survivors' quality of life.

Optimal pain assessments in joint replacement patients (EO 2015/4/204)

Applicant: University of South Australia
Approval: 31 December 2019

This study will examine reported pain and analgesic medication use, before and after joint replacement surgery.

It will also identify patient subgroups, using analgesic medication ineffectively or inappropriately.

Findings will assist health professionals to improve the care of patients who undergo joint replacement surgery.

Utilising prescription patterns to identify increased risk of death after a diagnosis of epilepsy (EO 2015/4/205)

Applicant: University of Melbourne
Approval: 02 April 2018

This project studies risk factors for premature mortality among patients, recently diagnosed with epilepsy. Specific objectives include:

• Establish anti-epileptic drug prescription patterns
• Identify mortality rates and causes of death
• Determine prevalence rates for cancer diagnoses.

A study cohort of patients with new-onset epilepsy will be linked with the Pharmaceutical Benefits Schedule (PBS), National Death Index (NDI), and the Australian Cancer Database (ACD).

Findings will assist in identifying patterns of high-risk anti-epileptic drug use, and related health complications.

The Latrobe Early Life Follow-up Anonymised Data Linkage Study: The child health and development stream of the Hazelwood Health Study (EO 2015/4/206)

Applicant: Victorian Department of Health and Human Services
Approval: 31 December 2028

The Victorian Department of Health and Human Services commissioned a study to examine Latrobe Valley residents' health outcomes, following exposure to smoke from the 2014 Hazelwood coal mine fire.

The current study aims to provide new evidence about the relative importance of the severity and timing of air pollution exposure on a range of perinatal and child health, and developmental outcomes

The Victorian Department of Health and Human Services will link a study cohort with several Victorian health data sources. AIHW will then link the data with the National Death Index (NDI) and Medicare Benefits Schedule (MBS).

Findings will inform the development of evidence-based guidelines for managing air pollution events, and minimising health risks for pregnant women, unborn babies and infants.

ACT Asbestos Health Study: Data linkage study on the risk of mesothelioma and other cancers (EO 2015/4/208)

Applicant: Australian National University
Approval: 30 June 2017

Between the late 1960s and 1979, houses in the ACT and southern NSW were insulated with loose-fill asbestos. Despite remediation, asbestos was still found in many houses, years later.

In recent years, the number of people reporting exposure to asbestos, and subsequent health complications, has risen. Despite this, little is known about the long-term health effects of living in houses containing loose-fill asbestos.

This study aims to:

• Estimate the prevalence of mesothelioma among individuals who have lived in houses containing loose-fill asbestos.
• Estimate the relative rates of mesothelioma in those who have resided in a house with loose-fill asbestos compared to individuals who have not, and to the general population.
• Calculate the rates of other types of cancers associated with long-term exposure to asbestos.

Study cohort data and controls from the ACT resident population will be linked with the National Death Index (NDI) and the Australian Cancer Database (ACD).

Findings should provide much needed information about health complications arising from exposure to loose-fill asbestos.

The safety of pharmacotherapies for smoking cessation (EO 2015/4/209)

Applicant: University of New South Wales
Approval: 30 June 2019

There are a number of pharmaceutical interventions to assist individuals to cease smoking (e.g., bupropion, varenicline and nicotine replacement therapy). Some interventions have, unfortunately, been linked to adverse events such as cardiovascular disease, depression, seizures and, in severe cases, suicide.

This study examines whether the use of smoking cessation pharmaceutical interventions is associated with an elevated risk of cardiovascular disease, adverse psychiatric outcomes, and seizures.

A study cohort will be linked with the Pharmaceutical Benefits Schedule (PBS) and the Medicare Benefits Schedule (MBS).

Findings will determine whether smoking cessation pharmaceutical interventions are, in fact, linked to adverse health outcomes.

Linkage of ACT Cancer Registry to the National Death Index (EO 2015/4/210)

Applicant: ACT Health
Approval: 30 June 2017

The ACT Cancer Registry was established in 1982. It is a population-based registry of individuals, diagnosed with cancer in the ACT.

This study links the ACT Cancer Registry to the National Death Index (NDI). It will identify individuals who were diagnosed with cancer in the ACT, but who may have died interstate.

The linked dataset will be used to conduct an up-to-date cancer relative survival analysis of ACT residents, and examine survival trends over time.

The results will be important for monitoring progress towards early diagnosis, and contributing to the effective treatment and management of ACT cancer patients.

Recent changes in IVF clinical practice: Data linkage to investigate their impact on fetal growth, birth defects and cerebral palsy (EO 2015/4/211)

Applicant: Telethon Kids Institute
Approval: 31 December 2017

In Australia, the number of invitro fertilisation (IVF) births continues to increase. At the same time, new IVF practices (e.g., extended embryo culture, rapid embryo freezing) have been implemented. However, little is known about the effects of these on developmental outcomes, if any.

This study will establish whether changes in IVF practices are linked to adverse developmental outcomes.

Western Australia (WA) is the only Australian jurisdiction to have a register of individuals who have received IVF treatment. This study will link this register with the Pharmaceutical Benefits Schedule (PBS) and WA health administrative datasets.

Health professionals can use findings to enhance post-IVF developmental outcomes.

Surveillance of hospitalisations, antiviral therapy, hepatocellular carcinoma and mortality among people diagnosed with hepatitis C or hepatitis B virus infection in New South Wales: An annual population-based linkage study (EO 2015/4/212)

Applicant: The Kirby Institute (University of New South Wales)
Approval: 01 December 2020

This study attempts to establish an annual, prospective population-based program for monitoring morbidity and mortality among individuals diagnosed with hepatitis B and/or hepatitis C.

A study cohort will be linked with the National Death Index (NDI), Pharmaceutical Drugs of Addiction System (PHDAS), and the Pharmaceutical Benefits Schedule (PBS).

The study will evaluate trends and identify populations at increased risk of hepatitis-related morbidity and mortality.

Findings will inform policies designed to reduce the risk and burden of hepatitis B and/or hepatitis C.

Hazelwood Adult Survey & Health Record Linkage (EO 2015/4/214)

Applicant: Monash University
Approval: 02 December 2025

From February to March 2014, a fire took place at the Hazelwood Power Station, in Victoria. There was community concern about potential health complications, following exposure to the smoke. The Hazelwood Adult Survey and Health Linkage Study was established to investigate any links between exposure to smoke and health complications.

The objective of this linkage study is to examine short-, medium- and long-term health effects following exposure to smoke from the Hazelwood Power Station fire.

A study cohort from Morwell and the comparison community of Sale will be linked with the National Death Index (NDI) and the Australian Cancer Database (ACD).

Findings will inform the development of strategies to manage adverse health outcomes following exposure to smoke from the Hazelwood fire.

Cancer Pathways Study (EO 2015/4/219)

Applicant: Victorian Department of Health and Human Services
Approval: 01 November 2020

The Cancer Pathways Study-a collaboration between the Victorian Department of Health and Human Services and the Commonwealth Department of Health- examines clinical pathways for cancer patients.

The objectives of this study are:

• Identify optimal cancer care pathways
• Identify variation in treatment outcomes
• Establish expenditure at each stage of a care pathway
• Make clinical pathways more available and accessible

The study cohort consists of between 50,000 and 55,000 Victorian patients diagnosed with colorectal and/or breast cancer.

AIHW will link the study cohort with the Medicare Benefits Schedule (MBS) and the Pharmaceutical Benefits Schedule (PBS).

Findings will provide information about treatment and care trajectories among cancer patients. Health professionals and policymakers can use this information to improve existing care programs by maximising availability and accessibility.

A prospective observational study of outcome of patients referred to a tertiary intensive care unit with criteria for treatment limitation.  (EO 2013/2/18)

Applicant: Geelong Hospital
Approval valid until 31 December 2016

Critical care treatment of patients can at times be limited in its ability to improve mortality outcomes and in some situations can lead to a death that is more burdensome on patients, families and resources. Although there are guidelines in place to assess whether a patient's condition warrants critical care, no research has been done to examine the implementation of these guidelines and subsequent outcomes. Appropriate information in this area can potentially optimise hospital resource usage and improve better end of life care.

The aim of this study is to describe the number, characteristics, interventions, and outcomes of patients that meet criteria for treatment limitation yet are referred to a tertiary critical care service. The study aims to describe the care of these patients after referral, their outcomes, and if they do not survive, collect information about their end-of-life care.

Linkage of 1,200 records to the NDI will be undertaken in order to obtain date of death, cause of death and state/territory of registration.

Investigating outcomes for deliberate self-harm hospitalisations in the Northern Territory.  (EO 2013/3/31)

Applicant: Menzies School of Health Research
Approval valid until 30 June 2022

The NT has the highest rate of suicide and deliberate self-harm of any jurisdiction in Australia, especially amongst its Aboriginal residents.  This research aims to create an important part of the evidence base needed to inform suicide prevention strategies in the NT.

This study will describe the characteristics, morbidity and mortality outcomes of those who attended a hospital in the NT for deliberate self-harm (DSH) (ie attempted suicide or intentional self harm) between 2000 and 2012, inclusive.  It will also incorporate an analysis of health service utilisation of such cases for Aboriginal people, in order to better identify opportunities and strategies for prevention in this high-risk group.

Linkage with the National Death Index will be undertaken to obtain date of death, year of death registration, state/territory of death registration, cause of death code and codes of other causes of death.

The study comprises two main components, referred to as Stage 1 and Stage 2.  Stage 1 is an analysis of hospitalisations in the NT for DSH and their outcomes between 2000 and 2012.  Stage 2 is an analysis of the patterns of health service utilisation of the Indigenous cases from the study population identified in Stage 1.

Long term registry of PCI/Stent procedures at the Canberra Hospital.  (EO 2013/3/35)

Applicant: Canberra Hospital
Approval valid until 30 October 2020

The cardiology department at the Canberra Hospital compiles a database of patients who have undergone coronary angioplasty and stenting procedures. The database is used for monitoring the effectiveness and the incidence of adverse events during long term follow up of patients after PCI/stent procedures. Linkage of the database to the NDI will be undertaken to obtain fact of death and date of death to improve the accuracy of the follow up information contained in this database.

Mortality among dialysis patients prescribed sevelamer hydrochloride and lanthanum carbonate compared with calcium-based phosphate binders: A retrospective cohort study using the Australian and New Zealand Dialysis and Transplant Database (ANZDATA)  (EO 2013/3/40)

Applicant: Westmead Hospital
Approval valid until 31 March 2015

Dialysis patients generally have an abnormally elevated level of phosphate in the blood (hyperphosphemia) as a result of chronic renal failure, and this can lead to a number of complications. Phosphate binders are a group of medications used to reduce the absorption of phosphate and are used almost universally in the dialysis patient population. There are a number of different classes of phosphate binders. There is some evidence that the traditional and widely used non calcium-based phosphate binders have an increased risk of mortality due to cardiovascular disease, as compared to the newer, but more expensive, non-calcium phosphate binders.

This project is a national, retrospective cohort study that aims to compare the effects on survival of the displacement of calcium-based phosphate binders by the newer non calcium-based phosphate binding agents, sevelamer and lanthanum, in patients on dialysis. The study has the capacity to establish whether these costly agents provide patient-level benefits to Australians on dialysis in a real life situation, and inform the selection of phosphate binding drugs that could improve patient survival. The study will examine the mechanisms that result in the poor survival and high cardiovascular mortality of patients on dialysis.

The AIHW, acting as the integrating authority will undertake linkage with the adult Australian dialysis patient data stored in the ANZDATA registry to the Pharmaceutical Benefits Scheme (PBS) to obtain prescription data for both classes of phosphate binders from 2002 onwards. (sevelamar and lanthanum were PBS listed in 2007-08), as well as other drugs used in treating side effects and comorbidities in dialysis patients

Cardiovascular events and death in rheumatoid arthritis patients - A 10-year follow up study  (EO 2013/4/53)

Applicant: Translational Research Institute
Approval valid until 31 December 2014

Patients with Rheumatoid Arthritis (RA) have increased morbidity and mortality from premature cardiovascular disease (CVD). Up to 50% of this excess mortality is secondary to ischaemic heart disease in the standardised mortality ratio due to CV events compared to the general population. The fact that premature CVD causes a significant health burden to RA patients necessitates the development of guidelines advising on how this increased CV should be identified and managed. Due to scarcity of long-term CV outcome data from RA patients, much of the guidance available has been extrapolated from CV studies performed in the general population. This project is a 10 year follow up.

Linkage with the National Death Index will be undertaken to determine cause and date of death, as some patients may have died in another hospital or at home and their death not recorded in their hospital notes.

Ten to Men: The Australian Longitudinal Study on Male Health  (EO 2013/4/54)

Applicant: University of Melbourne
Approval valid until 31 December 2020

Ten to Men is Australia's first nationwide longitudinal study of male health and is funded by the Commonwealth Department of Health. Participants will complete a questionnaire about their health status, social and environmental determinants of health and health-related behaviours including health service use. Data collection for the baseline wave of the study will commence in September 2013. The project aims to provide information on the determinants of male health and wellbeing aimed at building an evidence base to inform policy and programs to address health inequities between men and women and different groups of Australian males (e.g., males living in regional areas compared to capital city areas).   Annual linkage to the National Death Index will be undertaken to obtain date and cause of death.

Cardiovascular outcomes in Austin Health Heart Function Clinic patients: a mortality audit (2013)  (EO 2013/4/56)

Applicant: Austin Health
Approval valid until 30 November 2016

Chronic heart failure (CHF) is associated with high mortality and morbidity rates. Several treatments for CHF have resulted in hospital admission reductions and improvements in survival and quality of life. This project is an update to the Austin Health Heart Function Clinic mortality audit first carried out in 2006. The project aims to determine the mortality rate, analyse the relationships between cause of death, the underlying disease process and heart function therapies and to optimise patient care. Demographic, clinical and mortality data will be analysed to compare survival in patients as a function of different HF management strategies and the relative significance of specific therapies.

Linkage with the National Death Index (NDI) will be undertaken to determine fact and date of death, all causes of death and state of death registration.

Incidence and burden of childhood injury in Australia  (EO 2013/4/66)

Applicant: University of New South Wales
Approval valid until 31 December 2016

This project is a retrospective epidemiological sample cohort study of hospitalised child injury in Australia. The burden and causes of paediatric injury by injury severity are not clear, and a more accurate snapshot of the incidence and characteristics of severe injury and related follow-up care are needed. The aim of the research is to estimate and describe the burden of hospitalised childhood injury and related follow-up care; to determine the severity of the injuries experienced and factors influencing survival. The research will better inform injury prevention strategies, research priorities, trauma system design, health service planning and resource needs for injured children in Australia.

Linkage between the State and Territory Hospital data to the National Death Index (NDI) will be undertaken to obtain date and all causes of death, calculated age at death and month, year and state/territory of registration.

Massive Transfusion Registry (MTR)  (EO 2014/1/74)

Applicant: Monash University
Approval valid until 1 January 2018

The primary objective of this project is to establish a massive transfusion registry in Australia and New Zealand to collect fundamental data on transfusion practice and patient outcomes in the setting of critical bleeding (CB) and massive transfusion (MT). The Massive Transfusion Registry (MTR) collects information on patients who have experienced serious blood loss that required a large replacement of blood (i.e. massive transfusion).

Ongoing linkage will be undertaken to obtain the fact, date and cause of death for each identified patient from the National Death Index to analyse survival rates.

Using Data Linkage to Optimise Androgen Deprivation Therapy for Prostate Cancer Patients  (EO 2014/1/75)

Applicant: Repatriation General Hospital
Approval valid until 1 December 2015

Treatment of prostate cancer is a health priority for the Australian community.  Prostate cancer is diagnosed in 1 in 5 men who reach the age of 85 years and a large number of treatment options are available.  One of these options is androgen deprivation therapy.  Androgen deprivation therapy is currently recommended for patients with advanced prostate cancer.

This treatment may have side effects such as osteoporosis, heart attacks, stroke, diabetes, loss of muscle mass and depression.  At present there are no clear guidelines as to how these medications can be given to patients in such a way as to maximize survival and minimise side effects.

The study involves the linkage of data from the South Australia Prostate Cancer Clinical Outcomes Collaborative (SA-PCCOC) with the Pharmaceutical Benefits Scheme dataset (PBS) to obtain information on prescriptions to patients.  This project will  measure the survival outcomes of patients receiving androgen deprivation therapy in different ways.  This information will help to understand the needs of prostate cancer patients and to reduce the incidence of serious adverse events during androgen deprivation therapy.A prospective cohort study of ex-prisoners with a history of injecting drug use: examining health service utilisation, physical and mental health and blood borne virus trajectories  (EO 2014/1/77)

Applicant: Burnet Institute
Approval valid until 30 September 2018

This study is intended to provide insights into the complex relationships between incarceration, drug use, physical/mental health, service access and reoffending/recidivism.  This is a longitudinal study where prisoners pending release from Victorian prisons will be interviewed and blood samples collected shortly prior to release, with follow-up interviews conducted at three, twelve and twenty four months post-release.  These data will be supported by extensive record linkage with health (Medicare, justice health, hospitalisation, emergency department presentations, ambulance attendances, mental health, drug dependence treatment) and criminal justice (Victoria Police, Corrections Victoria, Justice Health) databases and paper records where appropriate.  Findings will aim to inform policy and services for this high-risk population and help prevent morbidity and recidivism

Linkage with the National Death Index will also be undertaken to establish if people in the study have died and their causes of death.

Using the National Death Index to identify deaths of people on the Northern Territory Rheumatic Heart Disease (RHD) Register  (EO 2014/1/78)

Applicant: NT Department of Health
Approval valid until 31 December 2018

The primary objective of this project is to investigate the survival rates and mortality trends of rheumatic heart disease (RHD) patients over time and to validate the causes of death recorded in the RHD register by performing data-linkage to the National Death Index every 3 to 5 years. The secondary objective is to investigate the survival rates and mortality trend of serious complications in RHD patients, specifically stroke, endocarditis, atrial fibrillation and heart failure.

Comorbidity and Trauma Study (CATS)  (EO 2014/1/81)

Applicant: National Drug and Alcohol Research Centre
Approval valid until 31 December 2021

The aim of this study is to examine the role, causes and predictors of mortality and patterns of engagement with participants on Opioid Substitution Therapy.  Data linkage between the NSW Pharmaceutical Drugs of Addiction System and the National Death Index will be undertaken.

Linkage of Australian Cystic Fibrosis Data Registry with the National Death Index  (EO 2014/1/82)

Applicant: Australian Cystic Fibrosis Data Registry
Approval valid until 31 March 2021

Cystic Fibrosis Australia operates the Australian Cystic Fibrosis Data Registry (ACFDR) in collaboration with the Directors of all cystic fibrosis (CF) treatment centres at Australian hospitals.  Annual data collected since 1998 include date and summary cause of death of patients who have died over that period.  The proposal is to obtain, through data linkage with the National Death Index, information to verify and augment the date and cause of death information recorded in the ACFDR for persons who have died over the period from 1998 until the most recent available date.

Are total hip and knee replacements associated with an increased cancer risk?  A nationwide cohort study  (EO 2014/2/84)

Applicant: Australian Orthopaedic Association National Joint Replacement Registry
Approval valid until 31 December 2016

As the rate of total hip and knee replacement has continued to increase it is critical to determine the long-term consequence of total joint replacement (TJR) to assess risk versus benefit.  Data are conflicting for an association between TJR and overall cancer risk.  Metal-on-metal (MOM) total hip replacements have been widely used over the last decade, particularly in younger patients. 

Linkage with the Australian Cancer Database (ACD)  and Australian Orthopaedic Association National Joint Replacement Registry (AOANJRR) will be undertaken to establish whether TJRs are associated with increased incidence of cancer

ANZSCTS Cardiac Surgery Database  (EO 2014/2/85)

Applicant: Monash University
Approval valid until 1 August 2021

The Australian and New Zealand Society of Cardiac and Thoracic Surgeons (ANZSCTS) database is a Clinical Quality Registry which stores information from different sites providing cardiac surgery and recruits patients continually. The purpose of the database is to monitor and improve the safety and quality of cardiac surgery in Australia. The information collected is used to monitor the treatment provided to patients, track serious complications and to understand more about treatment outcomes. It enables the identification of trends and/or gaps that may exist in service provision. Data are also used for research purposes in order to improve cardiac surgery.

Linkage to the National Death Index (NDI) to identify patients who have died beyond 30 days after their procedure, will be undertaken in order to report on long term outcomes of cardiac surgeries, thus providing researchers with additional information to identify trends and/or gaps that may exist in service provision.

NSW Cancer Registry reporting project utilising linked administrative data to examine care, treatment patterns and health outcomes for people with cancer  (EO 2014/2/89)

Applicant: Cancer Institute NSW
Approval valid until 30 June 2017

The Cancer Institute NSW reports quality, process and outcome indicators for cancer treatment in NSW at a state, Local Health District (NSW Ministry of Health administrative areas) and facility level. The reporting program aims to inform health system performance improvement through the investigation, monitoring and evaluation of patterns of treatment and treatment outcomes.

In order to measure mortality and survival outcomes of people diagnosed with cancer in NSW, linkage from NSW Central and Clinical Registries to the National Death Index (NDI) will be undertaken to obtain complete ascertainment of death.

Rapid assessment of cardiac chest pain: The Australia and New Zealand Assessment of Chest Pain Rule (ANZAP rule)  (EO 2014/2/90)

Applicant: Royal Brisbane and Woman's Hospital
Approval valid until 31 December 2015

This study extends on previous research conducted at the Royal Brisbane and Women's Hospital, Department of Emergency Medicine and prospectively validates a new clinical decision rule (the ANZAP rule) to rapidly diagnose chest pain.  The ANZAP pathway enables patients presenting with chest pain to be risk stratified up to four hours earlier than the current system.  It utilises patient characteristics, clinical findings and ECG analysis, in addition to the cardiac biomarkers, to identify patients at risk for acute coronary syndrome (ACS), enabling more rapid diagnosis and treatment.

Patients in this study are treated according to the newly developed protocol, then followed up 30-days post visit.  As an additional assessment, one-year follow up data will be collected to identify whether any major cardiac events occurred outside the hospital setting.

Linkage to the National Death Index (NDI) will be undertaken to identify deceased patients to ensure that these patients are not followed-up.  The data will also be used to identify the long term outcomes of an accelerated chest pain pathway. The data required from the NDI includes death status, date of death and all causes of death (including all causes)

TEXTMEDS - TEXT messages to improve MEDication adherence and Secondary prevention  (EO 2014/2/91)

Applicant: The George Institute for Global Health
Approval valid until 1 March 2016

Cardiovascular disease (CVD) is the leading cause of death and disease burden. Data show that approximately half of all CVD events occur in those who have had a prior hospital episode for coronary heart disease (CHD). However, if survivors of Acute Coronary Syndrome (ACS) attend secondary prevention programs and adhere to risk factor modification including drug regimens then their hospital readmissions within one year may be reduced and their survival improved.

The TEXTMEDS study represents a multi-centre randomised controlled trial across 18 Australian sites of 1,400 participants with prior ACS who will be followed for 12 months. The purpose is to investigate whether sending mobile phone text messages with advice about healthy living and preventing heart disease and offering expert advice over the phone to patients who have a high risk of cardiovascular events, will improve their risk factors after 12 months. The primary outcome is to determine whether participants in the intervention group are more adherent than the control group in taking their medications and thus reduce their risk of future cardiovascular events.

Linkage with the National Death Index (NDI) will be undertaken to establish date and cause of death.

Identifying pathways promoting socio-emotional competence and academic attainment to redress health and developmental inequities amongst Australian Children  (EO 2014/2/92)

Applicant: Royal Children's Hospital
Approval valid until 30 June 2018

The AEDI measures early childhood development for around 98% of the 261,099 school entry children for 2009.  The B Cohort of LSAC is a sample of 5,107 children recruited in 2004 collecting information on their experiences within their families and communities, their health, their child care experiences and the early years of their education.  Consent has been sought on both the AEDI and LSAC to combine the data collected with data from other sources.

Linkage between the Australian Early Development Index (AEDI) 2009 and the B Cohort of the Longitudinal Study of Australian Children (LSAC) will be undertaken

What are the long-term outcomes of patients with obstructive coronary artery disease undergoing percutaneous coronary intervention at a tertiary referral centre?  (EO 2014/2/102)

Applicant: Austin Health
Approval valid until 31 December 2014

The purpose of this study is to investigate the relationship between clinical, coronary anatomical and procedural factors and long-term outcomes of patients with acute and stable obstructive coronary artery disease undergoing percutaneous coronary intervention (PCI).

The research may identify potential predictors of the long-term outcomes of patients undergoing emergent or elective PCI. Information gained from the study could potentially result in a change of practice in systems of care and procedural aspects of PCI at Austin Hospital.

Linkage with the National Death Index will be undertaken with results being used to analyse survival rates and mortality outcomes of patients. The data will also be used as part of the quality assurance project at Austin Health.

Pharmacogenetic Study of the Influence of Genetic Factors on the Outcome of Medication Treatment for Epilepsy  (EO 2014/3/88) 

Royal Melbourne Hospital
Approval valid until 31 December 2016

The main objective of this study is to analyse the long-term individual responses of antiepileptic drug treatment and assess any risk factors for the treatment outcome by following up patients at a number of Victorian hospitals who commenced the treatment since 2003. It will also describe the nature of service utilization in patients who have been diagnosed with epilepsy.

Premature mortality is acknowledged internationally as a major problem in epilepsy. Despite evidence of this serious problem, there are little data available to inform prevention and the Australia-specific data of risk of mortality in epilepsy is scant. A task force lead by the peak consumer organisations has been formed in recognition of the need to work with researchers to obtain this data, which should provide information about mortality in newly treated epilepsy patients in Australia.

Data Linkage will be undertaken between the study cohort to the National Death Index to obtain both date of death and cause of death

Evaluation of potential risk of neurodegenerative disease in recipients of cadaveric human growth hormone  (EO 2014/3/95) 

Applicant: University of Melbourne
Approval valid until 31 August 2015

This project will investigate whether recipients of the Australian Human Pituitary Hormone Program (AHPHP) hormones will have an increased risk of neurodegenerative diseases through inoculation of disease-causing misfolded proteins, which were derived from human pituitary glands. The Australian National CJD Registry (ANCJDR) plans to evaluate the incidence of neurodegenerative diseases on death certificates of the recipient cohort, relative to age and sex-matched controls from the general population.

Data linkage will be undertaken between the Australian Human Pituitary Hormone Program (AHPHP) recipient data held by the Department of Health  and the National Death Index to identify AHPHP recipient deaths.

Potentially modifiable factors predicting outcomes in older adults admitted to intensive care  (EO 2014/3/101) 

Applicant: Griffith University and Gold Coast University Hospital
Approval valid until 1 September 2016

The population of older adults (≥65 years) in Australia is projected to double within 50 years and will be accompanied by increased need for access to intensive care services, making resource allocation and associated health care costs a significant consideration. The importance of identifying potentially modifiable factors that might impact on patient outcome is required to optimise therapeutic recovery for critically ill, older adults.

The aim of this study is to describe and compare the differences in non-modifiable and potentially modifiable predictors of death and complications in three subgroups of critically ill older adults, aged 65 to 74, 75 to 84, and 85 and older. The primary outcome is mortality in hospital or after hospital discharge. Potentially modifiable factors that might influence patient outcomes include functional ability, protein/calorie intake, skin integrity, and hospital-acquired (nosocomial) infections.

This research will further develop our understanding of factors that might contribute to mortality and the development of complications in critically ill, older adults and allow for possible interventions to be developed and tested across a variety of critical care settings

Data Linkage will be undertaken between patient records from the Gold Coast Hospital & Health Service and Princess Alexandra Hospitals ICU Hospital Based Corporate Information System (HBCIS) and the National Death Index to obtain date and underlying cause of death, as well as state/territory of registration.

Risks and benefits of breast cancer screening: BreastScreen WA cohort study of overdiagnosis and breast cancer mortality  (EO 2014/3/109) 

Applicant: University of Melbourne
Approval valid until 31 December 2016

The main overall objective of the project is to estimate the excess amount of breast cancer (i.e. over diagnosis) due to breast cancer screening and to relate this to any reduction in breast cancer mortality due to breast cancer screening. The value of screening has often been questioned because of over diagnosis (and subsequent treatment without benefit) and there have been numerous calls to provide women with better information regarding the harms and benefits of screening. However, because of the uncertainty in current estimates of over diagnosis it is impossible to provide women with useful information, and for policy makers to assess the harms and benefits of screening. The study is designed to provide valid and precise estimates that will be of direct benefit to Australian women and to Australian policy makers and screening providers.

The project involves a cohort of about 66,000 women invited to attend BreastScreen in 1994 and 1995 in Western Australia. Data linkage will be undertaken between the cohort and the National Death Index, the Australian Cancer Database and Medical Benefits Scheme data to obtain (a) date and cause of death, (b) breast cancer diagnoses and (c) information on Medicare-reimbursed mammography to ensure that women who have private mammography are properly classified.

Australian Longitudinal Study of Womens Health  (EO 2014/3/110)

Applicant: University of Queensland
Approval valid until 31 December 2030

This study is a longitudinal population-based survey, funded by the Department of Health.  The project began in 1996 and examines the health and wellbeing of over 40,000 Australian women.  This information from the study has helped to shape and develop relevant policies and services nation-wide that have positively affected the health of participants and the population they represent.  Data Linkage between the study cohort and the National Death Index will be undertaken to establish fact and all causes of death.  This will enable information on participants who are deceased to be updated, as well as allowing analysis of rates and predictors of mortality.

Surveillance of hospitalisations, hepatocellular carcinoma and mortality among people diagnosed with hepatitis C or hepatitis B virus infection in New South Wales; An annual population-based linkage study  (EO 2014/3/114) 

Applicant: University of New South Wales
Approval valid until 31 October 2018

In Australia, hepatitis C virus (HCV) or hepatitis B virus (HBV) infections are associated with increased morbidity, mortality and health-related costs. Effective treatment for both infections is available and is associated with the prevention of HCV- and HBV-related morbidity and mortality. New treatments are also being developed. Given this, the expansion of HCV treatment uptake, and the identification and management of undiagnosed cases of HBV are key components of the National Hepatitis C Strategy 2010-2013 and the National Hepatitis B Strategy 2010-2013. This project will establish an annual prospective population-based surveillance system for monitoring morbidity and mortality among people diagnosed with HCV or HBV infection in NSW. It will evaluate trends and identify populations at increased risk of HCV- and HBV-related morbidity and mortality, and thus generate important data informing future policy to reduce the HCV and HBV burden in NSW.

Data linkage between the NSW Notifiable Conditions Information Management System (NCIMS) and the National Death Index will be undertaken to obtain: date and all causes of death as well as sex, month and year of birth, age at death, country of birth and duration of residence in Australia, SLA of residence and state/territory and year of registration.

Data linkage studies to evaluate the association between use of anti-diabetic and cholesterol medications, the Mirena intrauterine device and risk of, and survival from, gynaecological and other cancers  (EO 2014/3/116)

Applicant: QMIR Berghofer Medical Research Institute
Approval valid until 31 December 2017

Recent years have seen rising numbers of prescriptions for the levonogestrel-impregnated intra-uterine device Mirena, diabetes medications such as Metformin, and cholesterol lowering medications such as statins. Data linkage will be undertaken between the National Death Index, Australian Cancer Database, Medicare Benefits System and Pharmaceutical Benefits System to explain whether these devices/medications effect cancer risk or influence survival.  The results of this study will inform decision making on medication use.

Proportional differences in children's school readiness based on their differential exposure to early childhood services  (EO 2014/3/117)

Applicant: Department of Education
Approval valid until 31 December 2015

The aim of this study is to investigate the link between intensity of exposure to early childhood education and care (ECEC) services and children's school readiness and the roles of different ECEC services in buffering the negative effects of low/high intensity exposure to ECEC services on children's school readiness.  It will further quantify the extent to which children's school readiness varies by the differential exposure to ECEC services.  Data linkage will be undertaken between the Child Care Management System and the Australian Early Development Index data set.

Risk stratification of the hepatocellular carcinoma development and outcomes using transient elastography  (EO 2014/3/119)

Applicant: Alfred Hospital
Approval valid until 31 August 2015

FibroScan is a non-invasive method of assessing liver scarring, termed fibrosis.  The aim of this study is to determine the role of FibroScan in predicting outcomes in hepatocellular carcinoma, the most common form of liver cancer and the most rapidly increasing cause of cancer-related death in Australia.  The results of this study could lead to more effective hepatocellular carcinoma surveillance and improve the cost-effectiveness of screening.  Data linkage will be undertaken between the FibroScan database, the Australian Cancer Database and the National Death Index.

Is there a difference in the prevalence of allergy between children immunised with whole cell pertussis (wP) vs acellular pertussis (aP) vaccine?  (EO 2014/3/120) 

Applicant: Woolcock Institute of Medical Research
Approval valid until 31 August 2015

The aim of this project is to assess whether there is a difference in the amount of allergy between children who were immunised with two different types of pertussis (whooping cough) vaccine, whole cell pertussis (wP) and acellular pertussis (aP).

Data linkage will be undertaken between the Childhood Asthma Prevention Study (CAPS) participant data with Australian Childhood Immunisation Registry (ACIR) data. Recruitment for the Childhood Asthma Prevention Study was undertaken between 1997 and 2000. The initial cohort was 616 participants and data were collected from 552 children at 18. While CAPS collected information about the vaccinations children received, data regarding the exact type of pertussis vaccine administered wP or aP were not available to parents at the time of data collection. The proposed linkage will provide this additional information for each participant in CAPS.

Australian and New Zealand SNAPSHOT Acute Coronary Syndrome (ACS)  (EO 2014/3/121)

Applicant: The George Institute for Global Health
Approval valid until 11 November 2020

This study aims to measure the extent to which access to medical services and utilisation of medicines are associated with health outcomes in people that have survived Acute Coronary Syndrome.  These study findings will inform future clinical practice and policy for follow-up care of these people.  Data linkage between the Pharmaceuticals Benefits System, Medicare Benefits System and the National Death Index will be undertaken.

Developing an advanced data system for describing cancer stage, co-morbidity, clinical management and outcomes of Aboriginal people with cancer in South Australia; the Advanced Cancer Data System Study (ACaDS) (EO 2014/4/136)

Applicant: University of South Australia
Approval valid until 31 May 2018

ACaDS is one part of a project focused on developing, then demonstrating, the value of an advanced data system for monitoring cancer stage, co-morbidity and outcomes for Aboriginal people in South Australia. As a partnership between the University of South Australia; the South Australian Health and Medical Research Institute; the Aboriginal Health Council of South Australia; Cancer Council SA and the Beat cancer project; SA NT DataLink; and SA Health, ACaDS has the active oversight of an Aboriginal Community Reference Group. It uses South Australian Cancer Registry data to identify cancer events among Indigenous South Australians and matches these with non-Indigenous controls on the basis of diagnoses, age, sex and diagnosis year.

The objective is to quantify inequalities between Aboriginal and non-Aboriginal Australians in cancer stage, treatment and risk-adjusted survivals then apply these data in targeting services, monitoring implementation and evaluating effects on inequalities. This proposal aims to broaden the project data to include Pharmaceutical Benefits Scheme (PBS) by linkage to obtain information on chemotherapy, co-morbid disease management in primary care and actual and recommended treatment pathways.

A descriptive longitudinal study of Intensive Care outcomes from a private intensive care (ICUOS) (EC 2012/4/55)

Applicant: University of Queensland
Approval valid until 21 January 2015

Project summary

The aims of this project are to analyse the characteristics of patients admitted to intensive care, measure mortality, and analyse the personal, health services and technological factors affecting survival rates of these patients from 2002 until present, and annually for the next five years. A particular aim is to develop a model of risk over time for cardiac surgery patients and to investigate whether team case volume has an effect on this risk. The researchers wish to link the ICU cohort with the National Death Index to establish fact and date of death for use in survival analysis.

Passports to advantage: health and capacity building as a basis for social integration (EC 2012/4/58)

Applicant: University of Melbourne
Approval valid until 31 December 2013

Project summary

The Passports study involved interviews with 1,325 adult prisoners in Queensland in the weeks prior to their release, and again 1, 3 and 6 months post-release. The study involves linking interview data with recidivism and health service utilisation data covering the first two years post-release. Linkage with the National Death Index will be undertaken to identify deaths within 2 years of release.

The aims of the study are to analyse the incidence, timing and causes of death in a representative cohort of adult prisoners/ex-prisoners, and thus to identify health-related predictors of mortality, in order to make evidence-based recommendations for the prevention of mortality in recently released prisoners. Previous record linkage studies have shown that ex-prisoners are at increased risk of death, however limitations of routinely collected data mean that these studies have had limited capacity to identify risk factors for death, which could inform preventive interventions.

Long term survival after colorectal surgery in elderly patients (EC 2013/1/1)

Applicant: Department of Surgery, Deakin University and Geelong Hospital
Approval valid until 31 December 2014

Project summary

The purpose of this study is to determine the short and long term survival after resectional surgery for colorectal cancer in patients over eighty years of age at Geelong Hospital (Victoria) compared with younger patients, and to compare these with the Australian standard population. Approximately 20% of patients undergoing surgery for colorectal cancer are over the age of eighty years, and the shorter life expectancy of these patients and their higher rate of associated comorbidities means that their treatment is often different from younger patients. The long term outcomes of older patients have been poorly studied both locally and internationally. A further aim is to assess the utility of post-operative surveillance. This may help to make better decisions about whether such elderly patients need to be subjected to expensive, invasive and potentially harmful surveillance post-surgery for bowel cancer.

Linkage to the National Death Index will be undertaken to obtain fact, date and cause of death to determine the survival rates due to cancer and other causes.

Mortality 15 years after specialist early intervention treatment for first episode of psychosis (EC 2013/1/3)

Applicant: Orygen Youth Health Centre and Centre for Youth Mental Health, Melbourne University
Approval valid until 1 May 2018

Project summary

The effects of psychosis can be debilitating and have long and short term implications on the lives of suffers. The Early Psychosis Prevention and Intervention Centre (EPPIC), as part of the Orygen Youth Health Clinical Program (OYHCP), demonstrated the immediate benefits that come from providing specialist early intervention (SEI) to young people experiencing their first episode of psychosis. The researchers believe that investigating longer term impacts of SEI, such as mortality, physical health, neuro-cognition and vocational status, are integral to the implementation of future clinical and best practice guidelines.

This study is aimed at investigating the mortality of the First Episode Psychosis Outcome Study (FEPOS) cohort as part of a wider project designed to examine the 15 year outcomes of participants who were treated for a first episode of psychosis at the EPPIC between 1998 and 2000. Linkage to the National Death Index will be undertaken to determine fact, date and all causes of death.

The results of this study will be used to establish mortality rates for the FEPOS cohort 15 years after first episode and, more specifically, rates of natural versus unnatural (ie. suicide) cause, timing of death in relation to treatment, and the impact a range of individual morbidity characteristics had on mortality over time. Such analyses are important in the establishment of outcome and clinical performance measures.

Australian Longitudinal Study on Women's Health (EC 2013/1/7)

Applicant: University of Queensland
Approval Valid until 31 December 2016

Project summary

The Australian Longitudinal Study on Women's Health (ALSWH) - widely known as Women's Health Australia - is a longitudinal population-based survey, funded by the Australian Government Department of Health and Ageing. The Project began in 1996 and examines the health of over 40,000 Australian women. The ALSWH involves three large, nationally representative, cohorts of Australian women representing three generations (born 1973-78, 1946-51 and 1921-26). The Study was designed to explore factors that influence health among women who are broadly representative of the entire Australian population. Women were randomly selected from the Medicare Australia database and invited to participate in the longitudinal study. After Survey 1 in 1996, the three age cohorts have been surveyed sequentially, one cohort per year, on a rolling basis since 1998.

The Project provides a resource to examine associations over time between aspects of women's lives and their physical and emotional health. It provides an evidence base to Department of Health and Aging - as well as other Australian and State/Territory Departments - for the development and evaluation of policy and practice in many areas of service delivery that affect women.

The AIHW will act in its role as an Integrating Authority, and link the ALSWH 1921-1926 birth cohort to a number of aged care-related Commonwealth datasets: Aged Care Funding Instrument, Resident Classification System, Community Aged Care Program, Extended Care at Home Program, Extended Care at Home - Dementia Program, Home and Community Care, and Aged Care Assessment Program. The resulting data will provide a unique and nationally representative resource for evaluating the current health and psychological policy for women in this older age group, and potentially lead to the implementation of changes that will improve health care services for this population

Linkage of Disability Services National Minimum Data Set and Home and Community Care Program National Minimum Data Set (EC 2013/1/9)

Applicant: Australian Institute of Health and Welfare
Approval valid until 31 December 2014

Project summary

The AIHW has been commissioned by the Standing Council on Community and Disability Services Advisory Council (SCCDSAC) to link and analyse the Disability Services National Minimum Data Set (DS NMDS) 2010-2011 and the Home and Community Care National Minimum Data Set (HACC NMDS 2010-2011. The main objectives of this project are to further the knowledge, experience and capability to conduct data linkage across community service administrative collections and to analyse the characteristics of clients who are common to the Disability Services and the Home and Community Care programs in the same time period. The outcomes are intended to provide valuable information for the development and monitoring of service needs that cross these service programs.

Chemotherapy administration within 30 days of death - A 5 year audit of 4 major tertiary hospitals (EC 2013/1/10)

Applicant: BioGrid Australia, Royal Melbourne Hospital
Approval valid until 3 December 2014

Project summary

Cancer is a common cause of morbidity and mortality in Australia. Chemotherapy is regularly used for the treatment of a wide variety of cancers with varying success. Palliative chemotherapy is often administered to extend and/or improve the quality of life of patients with advanced stages of cancer in Australia. However, currently there are no Australian data on the impact of palliative chemotherapy on patients. The current study aims to assess the frequency of palliative chemotherapy and its impact on quality of life, and to establish whether cancer type and any patient factors such as age, gender and socio-economic status impact on this and mortality rates. Results of this study will enable clinicians to make informed decisions about the use of palliative chemotherapy for individual patients.

Linkage will be undertaken with the National Death Index to determine fact, date and all causes of death.

Risk in loss to follow-up in the Australian HIV Observational Database (EO 2013/2/11)

Applicant: The Kirby Institute, University of NSW
Approval valid until 1 June 2014

Project summary

The Australian HIV Observational Database (AHOD) is an ongoing prospective cohort study.  Since its inception in 1999, the AHOD has been used to monitor the treatment and outcomes of HIV, including the pattern of anti-retroviral treatment use among different demographic groups, and HIV and non-HIV related causes of death.  An important step in progressing this study is to establish measures of mortality that can ultimately be used to assess the impact of HIV-positive status on chronic disease management and health promotion.

Linkage will be undertaken with the National Death Index to determine fact and date of death.

Do abnormal autonomic function tests increase mortality in type 1 diabetes? (EO 2013/2/12)

Applicant: The Institute of Endocrinology and Diabetes, The Children's Hospital at Westmead
Approval valid until 1 July 2016

Project summary

Type 1 diabetes has a significant impact on health and is linked to increased rates of mortality. However, specific factors which lead to increased mortality amongst sufferers are often still unclear. The study will examine the impact of autonomic nerve functioning and microvascular complications on death rates amongst type 1 diabetes sufferers. The results of could potentially be used to inform risk factor modification amongst the at risk population. 

Linkage will be undertaken with the National Death Index to determine fact, date and all causes of death.

Australian Stroke Clinical Registry (AuSCR) (EO 2013/2/16)

Applicant: Stroke Division, Florey Institute of Neuroscience and Mental Health
Approval valid until 1 July 2017

Project summary

The Australian Stroke Clinical Registry (AuSCR) is a national, clinical quality registry of patients admitted to hospital with acute stroke or transient ischaemic attack. The registry represents a collaborative effort to monitor, promote and improve the quality of acute stroke care. It is an ongoing registry with its own governance underwritten by the Florey Institute of Neuroscience and Mental Health (affiliated with the University of Melbourne). Data collection for AuSCR commenced in 2009.

Linkage will be undertaken with AuSCR data with the National Death Index to obtain the fact, date and all causes of death, and will be repeated annually for five years.

Australian and New Zealand SNAPSHOT Acute Coronary Syndrome (EO 2013/2/19)

Applicant: Cardiology Department, Concord Repatriation General Hospital
Approval valid until 21 April 2018

Project summary

The Snapshot Acute Coronary Syndrome (ACS) audit involved the collection of detailed information about consecutive patients (4,296) admitted to 463 public and private hospitals in Australia and New Zealand from 14-27 May, 2012. The aims of the study are: 

1. To evaluate contemporary patterns of care for patients admitted to hospital with an acute coronary syndrome (ACS) in Australia and New Zealand
2. To provide a greater understanding of the management and health outcomes of patients across the full breadth of hospitals in both countries
3. To assess whether effective treatments continue following discharge of these patients and
4. To examine whether provision of secondary prevention programs impact on adherence to recommended treatments and outcomes so as to inform future strategies to improve ACS care.

Linkage will be undertaken with the National Death Index to obtain fact and date of death, and all causes of death and will be repeated annually for 5 years.

Fourth Study of Mortality and Cancer Incidence in Aircraft Maintenance Personnel - (Fourth MCIS)  (EO 2013/2/26)

Applicant: Research Development and Co-ordination Section, Research Development Branch, Department of Veteran's Affairs
Approval valid until 31 December 2014

Project summary

This is a longitudinal follow-up study as part of phase two of the larger Study of Health Outcomes in Aircraft Maintenance Personnel (SHOAMP).  The SHOAMP followed a 2001 Royal Australian Air Force Board of Inquiry following concerns that personnel had increased health risks due to exposure to chemicals used in spray sealing of F-111 fuel tanks in 1999.  This project will enable the Department of Veterans' Affairs to ascertain the extent of cancer and mortality in this group of RAAF/Civilian personnel and to develop appropriate policy responses.

The fourth MCIS intends to ascertain if there is a higher rate of death and cancer in F-111 fuel tank maintenance personnel compared to other aircraft technical trades, non-technical personnel on the same airbase and the age matched standardised Australian population. This study is a continuation of three previous Mortality and Cancer Incidence studies which make up phase two of the Study of Health Outcomes in Aircraft Maintenance Personnel (SHOAMP).  The fourth MCIS will include an additional group of Tier Classified F-111 fuel tank maintenance personnel.

Linkage will be undertaken with the National Death Index to obtain fact, date and all causes of death and with the ACD to obtain cancer diagnosis and associated information.

Long-term follow up of individuals diagnosed with Type 1 diabetes mellitus in childhood  (EO 2013/2/30)

Applicant: BioGrid Australia
Approval valid until 30 November 2014

Project summary

Internationally, the incidence of type 1 diabetes mellitus is rising. While children diagnosed with Type 1 diabetes mellitus (T1DM) in the 21st century can grow and develop normally, they remain at risk of complications associated with long-standing hyperglycaemia and apparently higher mortality. This study aims to describe the clinical course in terms of glycaemic trajectories, as well as complication and mortality rates in an Australian cohort of adults diagnosed with T1DM during childhood who have transitioned from paediatric services at The Royal Children's Hospital (RCH) to adult services at the Royal Melbourne Hospital (RMH).

The aim of the study is to document the clinical outcomes and mortality rates for adults who were treated for T1DM at the RCH in childhood and who were transitioned from to adult services at RMH. Comprehensive T1DM data collections will be undertaken, from established T1DM databases at these two hospitals, accessed via BioGrid Australia.

Linkage will be undertaken with these datasets with the National Death Index to obtain fact, date and cause of death. This will enable analysis of mortality rates in individuals diagnosed with T1DM in childhood. The relationship between age at diagnosis/time since diagnosis and each of glycaemic control, onset of diabetes-related complications (including cardiovascular and cerebrovascular disease) and mortality will also be analysed.

Establishing a population inception cohort of patients with Inflammatory Bowel Disease: defining natural history, early prognostic features of severe disease and health care cost  (EO 2013/3/29)

Applicant: St Vincents Hospital
Approval valid until 31 December 2020

Inflammatory bowel disease (IBD) is a chronic disease group, including Crohn's disease and Ulcerative Colitis that affects about 78,000 Australians, predominantly between the ages of 15 and 40. IBD has a broad spectrum of disease manifestation, from mild to severe and debilitating. This project, which commenced in 2007, is the first population-based natural history study of patients diagnosed with IBD in Australia. It aims to increase the understanding of the real life progress of IBD, help with management of these patients in the future, and assess the health costs associated with this chronic disease. It involves examining health care outcomes, care after diagnosis including surgery, hospitalisation, GP and specialist visits, and medication use.

The aims of the follow up are to analyse disease severity and cost by frequency of Medicare funded specialist reviews to IBD affiliated doctors (e.g. gastroenterologists, surgeons and paediatricians, from the Medicare Benefits Scheme), and to assess disease severity and progress by assessing use of the various groups of IBD specific medications (from the Pharmaceutical Benefits Scheme).

Data linkage will be undertaken with the Pharmaceutical Benefits Scheme and Medical Benefits Scheme and the National Death Index to determine fact and all causes of death.

Melbourne Interventional Group (MIG) Registry: Clinical follow up of patients undergoing percutaneous revascularization at Victorian Hospitals  (EO 2013/3/32)

Applicant: Monash University
Approval valid until 1 October 2020

Percutaneous revascularisation (also known as percutaneous coronary intervention or angioplasty) is a non-surgical procedure used to treat the stenotic (narrowed) coronary arteries of the heart found in coronary heart disease. The Melbourne Interventional Group (MIG) Registry was established in 2004 to develop a systematic interventional cardiology database that would provide valid and reliable longitudinal clinical data of patients undergoing percutaneous revascularisation in Victoria. The MIG Registry is located in the Department of Epidemiology and Preventive Medicine at Monash University and now contains over 20,000 percutaneous coronary intervention (PCI) cases. It actively collects follow-up outcome data on these patients at 30 days and 12 months post procedure. The data enables evidence based research on patient outcomes with the aim of providing better care and improving outcomes for patients.

Repeat linkages with the National Death Index will be undertaken on a two yearly basis, to determine fact and date of death, all causes of death, and State/Territory in which death occurred.

Adult Congenital Heart Disease Database  (EO 2013/3/36)

Applicant: Royal Prince Alfred Hospital
Approval valid until 1 April 2017

Congenital and inherited heart diseases are common in Australia but their causes are poorly understood. The NSW Adult Congenital Heart Disease (ACHD) database project commenced in 2010 with the support from the National Heart Foundation NSW Cardiovascular Research network, and is housed at Royal Prince Alfred Hospital (RPAH). It represents the largest group of congenital heart disease patients in Australia. The main aim is to create a comprehensive longitudinal database of this patient group to allow clinicians and researchers to gain a better understanding of the characteristics of this cohort, which will potentially have benefits for these patients in the future. The database provides for an examination of trends in the incidence and prevalence of conditions, treatments, operative techniques and general clinical management, ultimately improving future treatment for congenital heart disease patients.

The specific aim of the current study is the analysis of survival for different diagnosis and treatment groups by various factors, including the existence of other conditions. Linkage of the ACHD database of approximately 5,000 records with the National Death Index (NDI) to determine fact, date and all causes of death, and state of registration will be undertaken until the end of the study in 2017.

Molecular Epidemiology of Endometrial Cancer: Australian National Endometrial Cancer Study (ANECS)  (EO 2013/3/39)

Applicant: Queensland Institute of Medical Research
Approval valid until 31 December 2020

The Australian National Endometrial Cancer Study (ANECS) is a national population-based case-control study that recruited women with endometrial cancer in all six states between 2005 and 2007. The ANECS database contains information on genetic and environmental risk factors, tumour characteristics and clinical follow-up data.

The aim of this phase of the study is to conduct a longitudinal follow-up of the ANECS cases (about 1500), including mortality outcomes.  Survival analyses will be conducted to examine the effect of various genetic, molecular and environmental factors, and treatments. The current literature examining the effect of potential prognostic factors for endometrial cancer is relatively limited, and the ANECS study may lead to improved patient outcomes through the identification of modifiable factors.

Linkage with the ANECS cohort to the National Death Index will be undertaken to obtain date of death and all causes of death, and state and year of registration.

Housing and homelessness data linkage  (EO 2013/3/46)

Applicant: Australian Institute of Health and Welfare
Approval valid until 31 December 2020

Project summary

The aim of this project is to examine links between people who receive housing assistance (primarily Public Housing (PH), and State Owned and Managed Indigenous Housing (SOMIH)) and specialist homelessness services.

Linkage with NSW and WA housing data with AIHW homelessness data will be undertaken and this will enable the development of a picture of people who access both housing and homelessness support services, and their patterns of service usage.

Time trends and risk factors for cancer incidence in people with HIV in Australia: a data linkage study  (EO 2013/3/47)

Applicant: University of New South Wales
Approval valid until 31 December 2023

The incidence rates of AIDS defining illnesses continue to decrease due to vastly improved HIV treatment. Increasing survival of people with HIV means that cancer, including AIDS defining cancer and other HIV-related cancer, is one of the most important issues as the population of people with HIV increases and ages. This study aims to follow up through data linkage people on the National HIV/AIDS Registry to determine the incidence of various types of cancer. The study cohort will include all adults (aged 16-80 years) diagnosed with HIV-infection in Australia between 1982 and 2012 as notified to the Australian National HIV/AIDS Registries.

Cancer incidence will be calculated for each type of cancer across five time periods broadly representative of combination therapy availability and advances in Australia, 1982-1995 (pre-highly active antiretroviral therapy or HAART), 1996-1999, 2000-2004, 2005-2007, and 2008-2012. These will be compared with cancer incidence in the general population. This will enable analysis of the impact of HIV treatment on cancer risk over time to determine risk factors for AIDS defining cancers and other HIV-related cancers, and so identify areas of emerging clinical and public health needs in the Australian HIV population for cancer prevention and early diagnosis. It will also inform the debate regarding the risks and benefits of commencing HAART at HIV diagnosis.

Linkage will be undertaken with the National HIV/AIDS Registry to the Australian Cancer Database to obtain cancer diagnosis items; and to the National Death Index to obtain date of death, all causes of death and state/territory of registration.

The health and social outcomes of injecting drug use in Melbourne: a record linkage study  (EO 2013/3/48)

Applicant: Burnet Institute
Approval valid until 31 December 2019

The Melbourne Injecting Drug User Cohort Study (MIX) is the largest cohort of people who inject drugs (PWID) ever established in Australia. The cohort is comprised of 688 young (aged 18-30 years) PWID who were recruited with their consent during 2008-2009 with a view to long term follow-up. The primary information collected in MIX includes data on injecting drug use behaviours, drug market access patterns and health service utilisation. Blood samples have been collected from first follow-up onwards for serological testing to determine blood borne virus status. Participants are followed up annually (or more frequently depending on hepatitis C status) at which time modified versions of the baseline questionnaire are administered to determine changes in behaviours and outcomes over time.

In its role as an Integrating Authority, AIHW will undertake the linkage of the MIX study with Medicare Benefits Scheme (MBS) and Pharmaceutical Benefits Scheme (PBS) data. This linkage will allow for an examination of cohort members' use of primary care services and key pharmaceuticals over time. Such information has never been collected in the Australian context, and is important in understanding the relationship between health services utilisation and outcomes such as cessation of drug use. This in turn can inform the development of prevention and service responses designed to ameliorate the burden of injecting drug use.

A randomised controlled trial of a psycho-educational intervention for melanoma survivors at high risk of developing new primary disease  (EO 2013/4/58)

Applicant: University of Sydney
Approval valid until 31 December 2020

The study is a randomised controlled trial evaluating psycho-education intervention for melanoma survivors. It also aims to assess the cost-effectiveness of supportive health care services for melanoma patients. The study will target 192 patients aged over 18 years, who had a previous melanoma diagnosed at AJCC stages I or II, attending one of the four melanoma high risk clinics in New South Wales (NSW).

The study has two objectives:

• To examine the efficacy of a newly developed psycho-educational intervention in reducing fear of melanoma recurrence among melanoma survivors at high risk of developing new primary disease and
• To assess the cost-effectiveness of psycho-educational intervention for melanoma survivors at high risk of developing new primary disease compared to usual care, from the perspective of the health system.

Linkage between the study cohort to the Medicare Benefits Schedule (MBS) and the Pharmaceutical Benefits Scheme (PBS) databases will be undertaken to obtain data about health resources and medications used during the study period. The study questionnaire will also be collecting health service resources used. Linkage to the MBS and PBS databases will only be requested for individuals who have given informed consent to participate in the study.

Factors Influencing Social and Health Outcomes after Land Transport Injury; inception cohort study (The FISh Study)  (EO 2013/4/59) 

Applicant: University of Sydney
Approval valid until 31 December 2022

This study is an inception cohort study following up people injured as a result of a land transport accident. The project aims to understand the factors associated with social and health outcomes after such an injury, including the compensation and legal processes and the health service experience. Data Linkage between study cohort to Medicare and Pharmaceutical Benefits Scheme (PBS) databases will be undertaken for a year before the injury and two years after the injury. The results will help analyse the frequency, cost and effectiveness of treatments. Results will also guide evidence based reforms in the compulsory third party insurance scheme in New South Wales (NSW).

Participation in the study is voluntary and does not influence injury treatment.

Population-level relevance of risk factors for cancer in Australia  (EO 2013/4/62)

Applicant: University of New South Wales
Approval valid until 31 December 2020

In this study, the fraction of different cancers attributable to modifiable lifestyle-related risk factors in Australia, will be studied and compared by applying the recently published Population Attributable Fraction (PAF) measure and program to data from five established large-scale Australian cohort studies. These cohort studies will be linked to the Australian Cancer Database (ACD) and National Death Index (NDI), and the relative risks (RR) between lifestyle-related risk factors and the four most common cancers (prostate, breast, colorectal, lung), accounting for the competing risk of death, will be estimated.  The population-level prevalence of the risk factors will be estimated from the National Health Survey (NHS).

Ensuring the Utility and Sustainability of Tissue Banks: Supporting translational Research in Australia through informed regulation and community engagement  (EO 2013/4/64)

Applicant: University of Sydney
Approval valid until 31 December 2015

This study is phase 1 in a 5 phase collaborative project funded by NHMRC to assess the sustainability of, and community engagement with, tissue banks. The project will provide evidence to inform policy and regulatory direction around tissue banking in Australia. The aim in this phase of the study is for the Australasian Leukaemia and Lymphoma (ALLG) Tissue Bank to identify living donors in order to send them a letter of invitation and questionnaire to collect their views on ethical concerns in tissue banking. These donors have previously consented to participate in future studies, including survey studies.

Linkage with the National Death Index will be undertaken for the purpose of updating the accuracy of the ALLG tissue donor database to identify deceased tissue donors ensuing only living tissue bank donor patients are invited to participate in the study.

Life Expectancy in cerebral palsy to the 6^th decade  (EO 2013/4/65)

Applicant: University of Western Australia
Approval valid until 31 December 2014

This project is an extension of a 1997 study, which linked the Western Australian (WA) Cerebral Palsy (CP) Register to the National Death Index to establish duration of life by clinical characteristics and a cause of death profile. The results suggested the mortality rates of individuals with severe disability decrease significantly after the age of 20 years. However, the study could provide little information about the continued life expectancy for subjects with severe CP who had survived their teenage years.

The aim of this project is to provide more accurate CP lifespan information to assist in the assessment of care provisions required over a lifespan. These provisions assist in the daily lives of CP subjects and are administered by their families with the assistance of the National Disability Insurance Scheme. It is proposed to extend the original linkage to include all WA CP registered births to 2010 (approximately 3,100 people).

Linkage between the WA CP records and the National Death Index (NDI) will be undertaken to determine date of death and all causes of death.

Which factors play a role in atherosclerotic plaques in patients with stable and unstable coronary syndromes?  (EO 2013/4/67)

Applicant: University of Melbourne
Approval valid until 31 December 2020

Chronic artery disease is a leading cause of death in Australia. This study assesses the role of novel biomarkers in predicting adverse events in subjects presenting with acute coronary syndromes. It aims to assess blood and urine markers within the circulation of the heart and the body to test if they are elevated in patients with heart disease. Serum levels of the angiotensin converting enzyme (ACE) 2 and the receptor for advanced glycation end products (RAGE) have been measured in subjects presenting with stable and unstable acute coronary syndromes. Researchers are seeking to assess the relationship between these circulating biomarkers and subsequent cardiovascular outcomes. This study may potentially identify new treatment targets for coronary artery disease including the development of screening tests, which would help identify patients at highest risk of adverse outcomes following acute coronary syndromes.

Linkage will be undertaken between records for study patients with the National Death Index (NDI) to determine fact and date of death and all causes of death.

Long-term survival of Flinders Intensive and Critical Care Unit patients determined after matching with the National Death Index (EC 2012/1/1)

Applicant: Flinders University
Approval valid until 31 March 2017  

Project summary  

The researchers seek to link the Flinders Medical Centre Intensive and Critical Care Unit (ICCU) database of about 25,000 patients with the National Death Index to determine fact of, date of and cause of death for all patients. This information then will be used in statistical analyses to calculate de-identified long-term patient survival rates and monitor them over time. Patient outcomes are generally only known to time of hospital discharge, and determining long-term patient survival is important in researching ICCU clinical care outcomes.

Ten Year follow-up of survival after endovascular aneurysm repair (EC 2012/1/2)

Applicant: University of Adelaide
Approval valid until 28 February 2013  

Project summary  

Between 1999 and 2001 information pertaining to the surgical procedure endovascular repair (EVAR) of the abdominal aortic aneurysms was collected from 961 patients. This was used along with the long-term follow-up data, to produce a statistical model whereby predictions of outcome after EVAR could be made based on eight preoperative variables. The aim of the study is to update and improve the current model and to re-link the National Death Index to obtain 10-year survival and mortality outcomes for the original patient cohort.

Mortality rates in a youth offender cohort: a 10 year follow-up (EC 2012/1/3)

Applicant: Royal Children's Hospital
Approval valid until March 2013  

Project summary  

This is an extension of a previous study; Young Offenders' Risk and Protective Factor Study; a ten-year follow-up study of a Victorian cohort of 2,489 first time youth offenders. This study, between 1988 and 1998, found a marked increase risk of premature death. The present study will extend the cohort and person-years to include youth offenders between the years 1998 and 2008, giving an estimated cohort size of about 5,000. The aim is to ascertain the mortality profile of the extended cohort over 20 years and identify those who are at greatest risk of early death. The researchers therefore seek to link the cohort with the National Death Index to obtain date and all causes of death.

Three month outcome of patients with suspected acute coronary syndrome using point of care troponin testing compared with laboratory based troponin testing: a randomised trial (EC 2012/1/4)

Applicant: St George Hospital
Approval valid until 30 October, 2012  

Project summary  

This is a follow-up of a study examining the use of a point of care (POC) blood analyser stationed within the emergency department (ED), operated by ED staff and with results obtained in a few minutes (rather than sending blood to a central laboratory). Patients presenting to the ED with chest pain were randomised to have a critical blood test (troponin T) analysed by the POC machine or by the central laboratory. The original study aimed to determine whether patient processing times in ED could be improved with the use of a POC machine. The current study aims to test whether clinical outcomes are identical regardless of the type of test, as determining by certain events during a 3 month follow-up period: death, cardiac arrest, heart attack, revascularisation procedure (bypass operation or angioplasty/stent). This will be achieved by medical record review, phone call, and linkage with the National Death Index. The researchers seek to link to the National Death Index to obtain date of death.

Do cognitive and sensory measures predict driving outcomes and driving cessation in older drivers? A 5 year validation study (EC 2012/1/5)

Applicant: Australian National University
Approval Valid until September 2012  

Project summary  

This study will follow-up a sample of older drivers in the ACT (aged 65 and over) who volunteered to take part in a study of Driving and Healthy Ageing in 2006. The follow-up study consists of a questionnaire mailed to participants and a brief cognitive assessment administered by telephone. The aim is to evaluate the long-term predictive validity of screening tools and other cognitive and visual measures for identifying older adults at higher risk of road accidents, and assess predictors of readiness to give up driving, to achieve safer driving behaviour on ACT roads. This will inform education programmes and the development of self-assessment tools for older drivers, and help elucidate how variables such as visual function, anxiety and health affect the relationship between cognitive ageing and hazard perception.

The researchers seek to link the study cohort of 41 with the National Death Index in order to identify who among the non-responders to the follow-up study has passed away since 2006.

Matching Melbourne Collaborative Cohort Study participants to the National Death Index to collect cause of death (COD) data for people known to be deceased but missing COD (EC 2012/1/6)

Applicant: Cancer Council Victoria
Approval valid until Ongoing  

Project summary  

The MCCS (Health2020) is a longitudinal study established in the 1990s by Cancer Council Victoria to investigate prospectively the role of diet and lifestyle factors in common chronic diseases. Between 1990 and 1994, 41,514 Melbournians aged 40-69 were recruited into the study. The principal objective of the MCCS is to improve the prospective investigation of genetic, dietary and lifestyle factors and risk of cancer and other common diseases such as cardiovascular disease and diabetes. This is being done by selecting a study population with an increased range of dietary exposures, by increasing the accuracy of dietary measurements and by collecting blood for the analysis of dietary biomarkers and DNA polymorphisms involved in dietary and other metabolic processes. MCCS participants are followed up approximately every 3-5 years to determine their subsequent health experience and events, in particular death and cancer diagnosis, for analysis of relationships with genetic, dietary and lifestyle factors. Participants gave consent at the time for Health2020 (MCCS) to contact their doctor and to look at medical records to confirm details of any illness that they may have had or any treatment that may have been given then or in the future.

The researchers seek to link the records of those participants known to have died, but whose cause of death is unknown, (around 2,500 people) with the NDI to obtain cause of death.

Depression, health-related quality of life and mortality/morbidity in cardiac patients (EC 2012/1/7)

Applicant: University of Melbourne
Approval valid until 31 December 2013  

Project summary  

Studies have indicated that depression in cardiovascular disease (CVD) patients predicts greater mortality and morbidity. However, there remains limited clarity as to how depression actually contributes to these negative outcomes. This project aims to contribute to current understanding of the pathways between depression, and mortality and morbidity. Specifically, it will investigate the role of physical health-related quality of life (HRQoL) as a mediator. The researchers seek to link to existing depression and HRQoL data for 192 patients from the Psychosocial CABGS (coronary bypass graft surgery) dataset to the National Death Index to obtain date and causes of death (The project also involves linking to the Victorian Admitted Episodes Dataset to obtain hospital morbidity data).

Predictors of survival from breast cancer (EC 2012/1/8)

Applicant: Royal Australian College of Surgeons
Approval valid until February 2013  

Project summary  

The National Breast Cancer Audit (NBCA) collects information from surgeons on the treatment of their patients who were diagnosed with breast cancer. In 2008, in collaboration with the National Breast and Ovarian Cancer Centre (NBOCC), the NBCA linked with the National Death Index to gain death information on these patients and, in the following years, conducted research into factors affecting survival from breast cancer. The researchers are seeking a further linkage with the National Death Index to obtain date and all causes of death to create a more up-to-date dataset. The objective of the study is to assess survival outcomes from breast cancer by various prognostic, socio-demographic and clinical treatment characteristics recorded on the NBCA database. The results will indicate effects of differences in treatment policy on survival outcomes by prognostic marker and other determinants. This information would help determine the most ideal treatment and follow-up regimes for women diagnosed with breast cancer and ultimately reduce mortality from the disease.

Trial of sunscreen and β-carotene supplements in the prevention of actinic skin and eye disease (also known as The Nambour Skin Cancer Study) (EC 2012/1/9)

Applicant: Queensland Institute of Medical Research
Approval valid until 2016  

Project summary  

This project involves the follow-up of participants in the Nambour Skin Cancer Study, which took place between 1992 and 1996. It aims to identify whether β-carotene supplementation and other nutritional factors are associated with cause of death, following preliminary analysis of earlier available data that suggests β-carotene supplementation may be protective for ceratin categories of cardio-vascular death. The researchers seek to link the study cohort (1,621 people) with the National Death Index to obtain date and all causes of death.

Aspirin to prevent recurrent venous thromboembolism (ASPIRE): A multi-centre, randomised, double-blind, placebo-controlled clinical trial examining the efficacy and safety of low-dose aspirin after initial anticoagulation to prevent recurrent venous thromboembolism (EC 2012/1/10)

Applicant: University of Sydney
Approval valid until 31 December 2013  

Project summary  

Patients who develop venous thromboembolism (VTE) in the absence of a clinically identifiable cause ('unprovoked' VTE) remain at high risk of recurrence for many years. Long-term treatment with warfarin is highly effective but the benefit of prolonging warfarin beyond six months is negated by the risk of major bleeding and the inconvenience of the treatment. There are currently no proven effective and safe alternatives to warfarin to prevent recurrence. ASPIRE, a multicentre, randomised, double-blind placebo controlled clinical trial, is examining the efficacy and safety of low-dose aspirin to prevent recurrent VTE in patients with a first episode of unprovoked VTE who have completed initial treatment with heparin and warfarin. The researchers seek to link the data for the study patients to the National Death Index to obtain date and cause of death for those patients for whom it may not have been recorded.

All participants have given written informed consent to be part of the clinical trial. This includes giving permission for medical records to be accessed during the course of the study to check on health status.

Mortality in people who inject drugs in Australia: record linkage of combined research cohorts (EC 2012/1/11)

Applicant: Burnett Institute
Approval valid until April 2013  

Project summary  

This project will bring together data from six Australian studies of people who inject drugs. All the Chief Investigators are collaborators on the recently awarded NHMRC Centre for Research Excellence in Injecting Drug Use and the integration of data across studies was a key objective of this Centre. With many comparable data fields, the combined data for over 2,000 people will provide the capacity to explore the factors associated with mortality across time in this vulnerable population and help inform prevention initiatives. The researchers are seeking to link the combined dataset to the National Death Index to obtain date and all causes of death. Data linkage will use first two letters of each of first name and surname, date of birth, sex and, where possible, last known postcode and date of death.

Australian Longitudinal Study on Women's Health (EC 2012/1/12)

Applicant: University of Queensland
Approval valid until 31 December 2016  

Project summary  

The Australian Longitudinal Study on Women's Health (ALSWH) - widely known as Women's Health Australia - is a longitudinal population-based survey, funded by the Australian Government Department of Health and Ageing. The Project began in 1996 and examines the health of over 40,000 Australian women. The ALSWH involves three large, nationally representative cohorts of Australian women representing three generations (born 1973-78, 1946-51 and 1921-26). The Study was designed to explore factors that influence health among women who are broadly representative of the entire Australian population. Women were randomly selected from the Medicare Australia database and invited to participate in the longitudinal Study. After Survey 1 in 1996, the three age cohorts have been surveyed sequentially, one cohort per year, on a rolling basis since 1998.

The Project provides a resource to examine associations over time between aspects of women's lives and their physical and emotional health. It provides an evidence base to the Department of Health and Ageing ( DoHA) - as well as other Australian and State/Territory Departments - for the development and evaluation of policy and practice in many areas of service delivery that affect women.

DoHA has given approval for ALSWH data to be linked with Medicare (MBS and PBS). This will provide a national database of information on a nationally representative group of women who have already provided data for 15 years. The ALSWH is one of the few large, long-running studies that can link longitudinal survey data and longitudinal health service data for the same individuals. Findings will be translated into evidence that can be used for prioritising health policy and planning to reduce the disease burden in health and to improve health services to Australian women.

The AIHW role is to facilitate the matching of ALSWH data with MBS and PBS data from Medicare on an annual basis, using ALSWH IDs. There is a rigorous process for the data flows for this matching that ensures that identifiable data (names and dates of birth), Medicare PIN and survey response data are all kept separate

The ALSWH also has approval to receive annually-updated mortality data by linkage with the National Death Index.

Single-blinded randomised controlled trial comparing the effect of care navigation versus current standard care in patients presenting to the Emergency Department with serious chronic illness, on the rate of re-presentation to the Emergency Department, re-admission to hospital and time spent in hospital (Care Navigation Trial) (EC 2012/1/13)

Applicant: University of Sydney
Approval valid until August 2014  

Project summary  

Inappropriately managed chronic illness results in exacerbations of health conditions, which lead to avoidable presentations to hospital emergency departments. Nepean Hospital is implementing 'Care Navigation', which is a new strategy tailored to link individual chronically ill patients presenting to the ED with community health services aimed at providing at-home chronic illness care and education. This study is a randomised clinical trial to test the difference in effectiveness to chronically ill patients over a two-year follow-up period between two strategies; comparing the current, symptom-led patient flow from emergency departments with Care Navigation.

The researchers are seeking to link the study cohort of 500 patients with the National Death Index to obtain fact of death at two points in the study: (a) prior to data collection at the commencement of the first year of follow-up to avoid contacting deceased study participants, and (b) at the end of the study period to ascertain mortality as an outcome.

Linkage of the National Diabetes Services Scheme dataset to the Pharmaceutical Benefits Scheme dataset to derive insulin status (EC 2012/1/15)

Applicant: Australian Institute of Health and Welfare
Approval valid until Ongoing  

Project summary  

This project is aimed at improving data quality in the NDSS dataset and subsequently the National Diabetes Register (NDR, which is derived from the NDSS data set) by data linkage to the Pharmaceutical Benefits Scheme (PBS) dataset held by Medicare Australia. Currently there are numerous uncertainties about the insulin use status of registrants on the NDSS dataset, due to ongoing data problems surrounding syringe purchases, limitation in the scope of the NDSS dataset, and complications resulting from the introduction of the medicine Byetta into the NDSS

The NDR, which is designed to monitor the incidence of insulin-treated diabetes in Australia and to provide a resource for epidemiological and clinical studies, requires accurate information on the insulin use status of registrants in the NDSS. Historically the quality of the insulin use status information in the NDSS has been lacking and the NDR has been compromised in its ability to accurately report on cases of insulin-treated diabetes. Linking the NDSS to the PBS will enable information on the number of insulin scripts to be added to the NDR. This in turn will enable (a) validation of the insulin status flag on the NDSS dataset, (b) derivation of a measure of insulin use each year for each registrant in order to monitor the prevalence of insulin-treated diabetes over time, and (c) estimation of the ascertainment rate of the NDSS dataset for insulin-treated diabetes.

The data linkage will be undertaken by the AIHW Data Linkage Unit as part of the regular process of constructing the NDR from the NDSS (obtained from Diabetes Australia every 6 months). The DLU already undertakes a number of steps in this process including linking the NDSS to the National Death Index (EC 2011-4-35).

Linkage of the National Diabetes Services Scheme (NDSS) data to the Pharmaceutical Benefits Scheme (PBS) data for the Diabetes medicines use and self-care report (EC 2012/1/16)

Applicant: Australian Institute of Health and Welfare
Approval valid until 30 June 2014  

Project summary  

This projects aims to analyse the use of cardiovascular disease medications, eye disease medications and chronic kidney disease medications by people with diabetes and give a measure of the number of people with diabetes who are using these medications to prevent or treat these associated diseases. It will also explore how self-care products and medications are purchased for the management of both Type 1 and Type 2 diabetes in Australia.

To control glucose levels, people with diabetes need to themselves carry out actions such as life style changes and monitor blood glucose levels, and often need to take prescribed medications including tablets or insulin. If blood glucose levels are left poorly controlled, diabetes can lead to a range of complications including the three above diseases.

The project involves linkage t of the NDSS (held by Diabetes Australia) to the PBS data (held by Medicare). The linked data set will enable analysis by type of diabetes, of the purchasing rates of medications for complications of diabetes. It will also enable the total amount of blood glucose monitoring strips purchased in Australia to be calculated, as these can be purchased through both the NDSS and the PBS programs.

The analysis will be carried out by the AIHW Cardiovascular, Diabetes and Kidney Unit, after receiving the de-identified linked file from the Data Linkage Unit. Thus the identifiable data for linkage will be kept separate from the clinical data for analysis and handled by different units.

Linkage of the National Diabetes Register to the Pharmaceutical Benefits Scheme dataset to update Indigenous status (EC 2012/1/17)

Applicant: Australian Institute of Health and Welfare
Approval valid until Ongoing  

Project summary  

This project is part of ongoing work by the AIHW to improve the quality of data held on the National Diabetes Register (NDR). As part of the National Indigenous Reform Agreement on Closing the Data Gap, the Council of Australian Governments has tasked the AIHW with auditing data quality and leading the analysis of Indigenous identification in key datasets, with a baseline report and ongoing five yearly studies to monitor improvement over time. One of the datasets identified for improvement is the NDR, which is a register of individuals who use insulin to treat their diabetes. The quality and integrity of Indigenous health statistics is of critical importance to the evidence base for monitoring progress towards the COAG Closing the Gap targets.

The NDR will be linked to the Pharmaceutical Benefits Scheme (PBS) data (held by Medicare Australia) to obtain Indigenous status from the PBS (known as the Voluntary Indigenous Identifier), to verify the Indigenous status information held on the NDR and to fill information gaps. The aim is to benchmark the current state of reporting of Indigenous status and to improve the quality of Indigenous status information held on the NDR with a view to more complete reporting in future. It is planned to seek approval to repeat the linkage periodically (approximately every 5 years).

The Data Linkage Unit (DLU) will receive the NDR identifying information (but no clinical information) in order to link the NDR to the PBS (Voluntary Indigenous Identifier), and then create a new field to be added to the NDR that will flag if a registrant is Indigenous according to the PBS.

Epworth Hospital Cardiac Surgery Database (EC 2012/2/20)

Applicant: University of Melbourne
Approval valid until 30 September 2019  

Project summary  

The Epworth Hospital Cardiac Surgery database currently consists of data on over 35,000 operations and has routinely been linked to the NDI since 1999. The researchers are seeking to link 19,948 patients from Epworth Hospital Cardiac Surgery database with the NDI to determine fact, date and all causes of death. This information will be used to conduct a 15 year survival data analysis as a means for assessing the impact of conduit (artery and vein) selection in cardiac surgery on long-term patient survival. The resulting information will be a guiding factor in the future of clinical practice in coronary surgery.

Rates of psychosis in high risk population (EC 2012/2/21)

Applicant: Orygen Youth Research Centre
Approval valid until 30 June 2014  

Project summary  

The researchers seek linkage with the National Death Index for 226 individuals who have been identified, through previous research studies at the PACE clinic, as at high risk of developing a psychotic disorder. The researchers wish to determine fact, date and cause of death. This information is to be used as part of their long term (>6 years) follow-up of previous study participants classified as 'Ultra High Risk' who have died.

The utilisation of medications during pregnancy and the associated health outcomes (EC 2012/2/22)

Applicant: University of Western Sydney
Approval valid until 16 April 2015  

Project summary  

This study aims to measure the extent to which medications are used prior to and during pregnancy, and the associated health outcomes for mother and child. It will also examine the extent to which utilisation has changed in response to policy reforms, and whether differences in utilisation exist between different population groups. Findings regarding the safety and utilisation of medications will be important for informing policy and guidelines on their prescription during pregnancy.

The study includes all women who gave birth in NSW and Western Australia in the period 2003 to 2010, later to be updated to include 2011-14 data. The Centre for Health Record Linkage in NSW and WA Data Linkage Branch will undertake the linkage of state-based perinatal, hospital, emergency department, death and birth defect records for their respective states. The AIHW will then undertake the linkage of Pharmaceutical Benefits Scheme data from Medicare to provide the medication information.

Long term angiographic results and clinical outcome of radial artery grafts (EC 2012/2/23)

Applicant: University of Melbourne
Approval valid until 31 May 2016  

Project summary  

This study aims to examine the differences in outcomes for coronary artery bypass surgery (CABG) between different types of grafts from other parts of the body and the survival and clinical wellness of participants receiving CABG after 10 years. The researchers seek to link a cohort of patients who have undergone CABG between 1995 and 2002 at the Royal Melbourne and Melbourne Private Hospitals, to the NDI to obtain date and cause of death. This will be used to help ensure that follow-up letters are not sent to deceased patients and to analyse outcomes for CABG patients.

Australian Orthopaedic Association National Joint Replacement Registry (AOANJRR) (EC 2012/2/24)

Applicant: Australian Orthopaedic Association
Approval valid until 30 September 2019  

Project summary  

The AOA National Joint Replacement Registry collects data on all joint replacement surgery in Australia. The analysis of the data provides valuable information on the outcome of joint replacements. The application seeks linkage to the NDI in order to identify those patients who have died and to obtain date of death and cause of death. This information is necessary to analyse survivorship of joint replacement procedures and mortality post-procedure. The Registry has been linked to the NDI annually since its establishment in 1999 (approved as EC 297). This application is for further ongoing linkage, anticipated to be undertaken twice a year.

Australian Treatment Outcome Study (ATOS) (EC 2012/2/25)

Applicant: University of New South Wales
Approval valid until 31 December 2013  

Project summary  

The ATOS is a prospective study of treatment outcomes for heroin dependence. Heroin users were recruited on entry to treatment in 2001 and 2002 and then regularly followed up for three years. Eleven year follow-ups are currently underway. The researchers are seeking to link the study cohort with the NDI to obtain fact, date and cause of death.

Fact of death is requested in order to avoid attempting to contact participants who are deceased. The causes of death are requested in order to analyse the impact that treatment exposure has on mortality. It is known that heroin users have much higher rates of mortality, particularly as a result of suicide.

Long term follow-up of specialist based metropolitan cohort of IBD patients (EC 2012/2/26)

Applicant: Concord Repatriation General Hospital
Approval valid until 31 January 2014  

Project summary  

The aim of the research is to describe the epidemiology of inflammatory bowel disease to determine the mortality and morbidity associated with it and to test a number of specific hypotheses. The researchers are seeking to link the patient cohort with the NDI to obtain fact, date and causes of death, and year and state of death registration.

Measuring the impact of the National HPV Vaccination Program through data linkage: screening participation and vaccine effectiveness in young Victorian women (EC 2012/2/27)

Applicant: Victorian Cervical Cytology Registry
Approval valid until 28 June 2013  

Project summary  

In 2007, the Australian Government funded the Human Papillomavirus (HPV) vaccine through its National Immunisation Program. This project will be the first to evaluate the effectiveness of the vaccine by comparing the difference in incidence of cervical abnormalities by vaccination status and will also determine the screening patterns of vaccinated women. It involves the linkage of the Victorian Cervical Cytology Registry (VCCR) and the National HPV Vaccination Program (NHVPR) for Victorian women. The primary aims are to compare participation in cervical screening and to compare the incidence of cervical abnormalities between vaccinated and unvaccinated women.

Household, Income and Labour Dynamics in Australia Survey (HILDA) (EC 2012/2/28)

Applicant: University of Melbourne
Approval valid until 30 September 2019  

Project summary  

The HILDA (Household, Income and Labour Dynamics in Australia) Survey has been conducted on an annual basis for 11 years, funded by the Australian Government. The purpose of this proposal is to match the HILDA sample contact database to the NDI to identify deaths. This will ensure accurate measurement of sample outcomes and will improve the quality of data both by identifying non-respondents who have died (which will assist in the construction of response rates and population weights), and through the provision of mortality data (fact of death, date of death and cause of death). In conjunction with the life course data provided by the HILDA survey, this will also facilitate research investigating health and socio-economic determinants of mortality.

RESoURCES Program. Verification of Family Histories (EC 2012/2/29)

Applicant: Cancer Council Victoria
Approval valid until 31 December 2016  

Project summary  

Researchers from Cancer Council Victoria are undertaking four separate case-control studies of less commonly understood cancers using a common cohort dataset. This is referred to collectively as the RESoURCES (Rare and Emerging Subtypes of Under-researched Cancers Epidemiology Study) Program.

The researchers seek a single linkage of this common dataset with the National Death Index and the Australian Cancer Database to verify cancer diagnosis and vital status to be used in all four component studies. A single linkage of the common dataset is sought to reduce duplication of effort and to expedite the linkage process.

Rwanda Deployment Health Study (EC 2012/2/30)

Applicant: University of Queensland
Approval valid until 30 June 2013  

Project summary  

The Rwanda Deployment Health Study (RDHS) is a retrospective longitudinal census of the health and compensation outcomes of all veterans of the Australian Defence Force deployment to Rwanda (Operation Tamar). The study aims to link data from medical and personnel records with compensation and healthcare utilisation datasets with the National Death Index, from the date of the first Rwanda deployment to the end of 2011, with the aim of understanding the longitudinal trajectory of health and compensation outcomes for ADF peacekeeping veterans and veterans in general. Linkage will be undertaken to obtain date and causes of death and the year of death registration.

Analysis of difference in bowel cancer outcomes between NBCSP participants and non-NBCSP participants in Australia (EC 2012/2/31)

Applicant: Australian Institute of Health and Welfare
Approval valid until 30 June 2016  

Project summary  

Data showing bowel cancer outcomes for those screened by the National Bowel Cancer Screening Program (NBCSP) are limited. This project aims to investigate and report on differences in outcomes between participants of the NBCSP and people in the NBCSP target ages who did not participate. Measures such as bowel cancer incidence, mortality and cancer stage (where possible) will be reported, along with additional information on the performance of the screening kit (that is, its predictive value). Linkage of NBCSP data to the Australian Cancer Database (ACD) and National Death Index (NDI) will be required to achieve this at the national level

Cardiac surgery in Indigenous Australians - How Wide is "the gap" (EC 2012/3/38)

Applicant: The Prince Charles Hospital, Townsville
Approval valid until 31 December 2013  

Project summary  

The aim of the research is to assess whether there are any differences between the outcomes of Indigenous and non-Indigenous patient cohorts who undergo cardiac surgery at Townsville Hospital. The researcher is seeking to link details of all patients who underwent cardiac surgery at Townsville Hospital between August 2008 and April 2010 with the National Death Index to obtain fact of death, date of death, and all causes of death.

Health status and economic outcomes of critically ill trauma patients (HECTIC) (EC 2012/3/39)

Applicant: Princess Alexandra Hospital, Brisbane
Approval valid until 31 March 2013  

Project summary  

The researchers are seeking to link approximately 40 study participants classified as lost to follow-up with the National Death Index to obtain fact, date and all causes of death. The data are requested as part of the initial descriptive component of the research which will examine the trajectory of critically injured adults in terms of health and economic outcomes during the 24 month period following their discharge from hospital.

Mortality and mental health in Darling Downs and Southwest Queensland (EC 2012/3/40)

Applicant: Queensland Health
Approval valid until 31 December 2013  

Project summary  

The aim of this research is to establish specific medical conditions contributing to mortality in persons with a mental illness, and to ascertain which of these conditions contribute the most to excess mortality. The research involves Aboriginal and Torres Strait Islander people. The health records of approximately 30,000 patients who have accessed public mental health services in the Darling Downs and South-West Queensland Health from 1991-2010 will be linked with the National Death Index to establish fact, date and all causes of death, as well as year of death registration, at the time of death.

Longitudinal head injury outcome study (EC 2012/3/41)

Applicant: Monash University and Epworth Hospital
Approval valid until 30 September 2013  

Project summary  

This is a longitudinal study that has been on-going since 1995 to determine whether people who survive a traumatic brain injury (TBI) have an increased risk of death following discharge from a rehabilitation setting. The aim of this research is to determine if patients enrolled in the study since 1995 have died and if so, what was their cause of death. Linkage will be undertaken for approximately 3,300 participants with the National Death Index to obtain fact, date and all causes of death.

Florey Adelaide male aging study (FAMAS) (EC 2012/3/42)

Applicant: University of Adelaide
Approval valid until 31 November 2017  

Project summary  

This is a longitudinal study of approximately 1,195 men aged 35-80 years and residing in the north-west suburbs of Adelaide at the time of recruitment. The aim of this particular aspect of the FAMAS study is use cause of death as part of the analysis of health outcomes and fact of death to maintain the participant data base. Linkage will be undertaken with the National Death Index to establish fact, date and all causes of death.

Assessing the impact of in utero exposure to psychotropic medications as part of a population study (The Pathways Project) of outcomes for the children of mothers with psychosis (EC 2012/3/43)

Applicant: University of Western Australia
Approval valid until 31 December 2015  

Project summary  

This research is part of the 'Pathways Project' which links several Western Australian health data sets. The aim of the Pathways Project is to enable assessment of medications as predictors of adverse infant outcomes and of adolescent and adult morbidity. Data linkage of a study cohort of mothers in Western Australia with major mental health disorders and their children, to Pharmaceutical Benefits System records will be undertaken to establish whether in-utero exposure to psychotropic medications has negative outcomes on children.

North West Adelaide Health Study (EC 2012/3/44)

Applicant: University of Adelaide
Approval valid until 31 December 2017  

Project summary  

The North West Adelaide Health Study (NWAH Study) is a longitudinal study begun in 1999. The study aims to collect information among residents in North West Adelaide about a range of chronic diseases (e.g. diabetes and asthma) to enable reporting on the risk factors associated with this group of diseases. Data linkage to the NDI will be undertaken to obtain date of death for those who have died.

Stage 4 of Enhanced Mortality Database project (EC 2012/3/45)

Applicant: Australian Institute of Health and Welfare
Approval valid until 31 August 2013  

Project summary  

The purpose of the Enhanced Mortality Database (EMD) project is to create a time series of mortality data that contain enhanced information on Indigenous identification. It is being conducted in stages and is now at Stage 4. The main objectives of Stage 4 are to continue to develop the time series of enhanced mortality data by extending the linkage to cover deaths data for the period 2007-2010 that have now become available, to include additional data sets that were not included in the previous stages, and to explore other algorithms for deriving Indigenous status beyond the "Ever-Indigenous" approach.

Data linkage to produce non-duplicated client counts for National Healthcare Agreement Performance Indicator #21: Treatment rates for mental illness (EC 2012/3/46)

Applicant: Australian Institute of Health and Welfare
Approval valid until 31 December 2014  

Project summary  

NHA performance indicator #21: Treatment rates for mental illness is defined as the proportion of the population receiving clinical mental health services. The indicator is published annually in the COAG Reform Council Report. The two main data sources for the indicator are Community Mental Health Care (CMHC) client counts at the State/Territory level and patients in receipt of Medicare subsidised services. Other relevant data sources are Department of Veterans Affairs (DVA) data covering subsidised medical treatment for eligible veterans and Private Mental Health Alliance (PMHA) data covering private psychiatric hospitals

The first phase of this project (approved as EC2010/3/39) linked Medicare PBS data with CMHC data for 3 jurisdictions and found that the combined count would be reduced by around 5% taking into account this overlap. The current proposal is for a second round of linkage, extending the work that began with 2009-10 MBS and CMHC data to linkage of 2010-11 data from MBS, CMHC (more than the 3 jurisdictions participating previously), DVA and PHMA with the aim of formalising the methodology for annual reporting.

Data linkage will be undertaken using the statistical linkage key SLK581 and postcode.

Novel and established risk factors for cardiovascular and metabolic disease: 45 and Up Study (EC 2012/3/47)

Applicant: Australian National University
Approval valid until 31 December 2015  

Project summary  

The 45 and Up Study completed recruitment of over 265,000 participants in mid-2009. Linkage of data from 45 and Up Study participants provides the opportunity for high quality, highly efficient investigation of a range of health issues, particularly those related to health outcomes reliably ascertained through routine health records. The aim of this project is to investigate the relationship between a range of novel and established demographic, lifestyle and health-related risk factors and cardiovascular disease outcomes. It will provide data that are specific to the Australian context at the same time as contributing to knowledge internationally.

The study participants will be linked to the National Death Index to obtain date and all causes of death to investigate the relationships of various established and emerging purported cardiovascular disease risk factors to all cause and case-specific mortality, focusing on cardiovascular disease mortality.

Medication use and health outcomes in the 45 and Up Study (EC 2012/3/48)

Applicant: Australian National University
Approval valid until 31 December 2016  

Project summary  

The 45 and Up Study completed recruitment of over 265,000 participants in mid-2009. Linkage of data from 45 and Up Study participants provides the opportunity for high quality, highly efficient investigation of a range of health issues, particularly those related to health outcomes reliably ascertained through routine health records. This project will examine the relationship between use of prescription medications and subsequent health outcomes, health services use and costs, and to examine how these relationships vary according to a range of socio-demographic, lifestyle and health related characteristics. In doing so, it will provide important evidence on the minimisation of adverse events through improved prescribing.

Particular outcomes to be investigated include: overall and cause specific hospitalisation (inpatient and emergency department), use of primary care and diagnostic services, mortality and cause specific mortality, use of other medications, impact on prescribing quality, and health. The study participants will be linked to the National Death Index to obtain date and all causes of death.

Linked perinatal, birth, death data set project (EC 2012/3/49)

Applicant: Australian Institute of Health and Welfare
Approval valid until 30 September 2019  

Project summary  

The aim of this project is to create a new national linked perinatal, birth and death data set for the purposes of analysing the factors affecting infant and child health outcomes in Australia. The data set will be created by linking unit record level data across jurisdictions from perinatal data collections, birth records and death records. Data Linkage will be undertaken between the NDI and state and territory perinatal and births data for deaths through to age 5 and beginning with births in 2003 to obtain data and all cause of death for this group.

Prospective Evaluation of a Model to Predict Outcomes Following Endovascular Aortic Aneurysm Repair (EVAR) (EC 2012/4/51)

Applicant: University of Adelaide
Approval valid until 31 December 2015  

Project summary  

The project involves follow-up with patients after EVAR from 1999 to 2011. The aim of this study is to collect data on mortality on the current cohort of patients who were enrolled in the NHMRC-funded EVAR trial. This data on post-operative mortality will be used to refine and validate the Endovascular Risk Assessment model. Identifying factors that predict early death would inform decisions on whether an EVAR procedure is the most appropriate for a patient, given their health status and anatomy of the Abdominal Aortic Aneurysm. Such a validated model will therefore be well placed to be used by surgeons and individual patients to make informed decisions on the risks and benefits of undergoing EVAR. Linkage to the National Death Index will be undertaken to establish date and cause of death.

Long term follow up of FIELD (Fenofibrate Intervention and Event Lowering in Diabetes) Cohort Study (EC 2012/4/52)

Applicant: University of Sydney
Approval valid until 31 December 2017  

Project summary  

The project is an extension of a large multi-centre study which was completed in 2005 and assessed the effects of lipid-modifying medication among patients with Type 2 diabetes, with study participants being recruited from Australia, New Zealand and Finland. Linkage will be undertaken with the National Death Index to obtain fact, date and cause of death (for patients lost to follow up) and to the Australian Cancer Database to obtain cancer incidence.

The impact of chlamydia infection on reproductive health in women (EC 2012/4/53)

Applicant: Kirby Institute, University of New South Wales
Approval valid until 1 January 2016  

Project summary  

Genital chlamydia infection is recognised as a major public health problem in women of reproductive age, with annual notifications in Australia rising four-fold in the last 10 years. The main control strategy is early detection and treatment, with a primary goal being to prevent longer term health consequences of the infection, however knowledge is incomplete. This study aims to provide robust estimates of the impact chlamydia infection has on longer term reproductive health consequences and involves record-linkage of key administrative health datasets.

A large cohort of women of reproductive age residing in the states of NSW and WA will be extracted from the Medicare Australia database. The cohort will be linked to Medicare Benefits Schedule data on chlamydia testing and treatment, and treatment of infertility; and to state based datasets including chlamydia notifications (to ascertain positive results from chlamydia testing), hospitalisation data (for infertility, ectopic pregnancy and other complications of early pregnancy) and midwifery data (for poor obstetric outcomes. The linked data collections will allow analyses to be conducted to examine rates of reproductive complications among women untested for chlamydia, and among women tested negative and positive for the disease. The results from this study should provide important. Information for planning and assessing the cost-effectiveness of future chlamydia control interventions.

The project has a well-defined data linkage strategy to protect the privacy of the women in the cohort. The AIHW will act in its role as an accredited Integrating Authority for the linkage of Commonwealth data. The Centre for Health Record Linkage (NSW) and the Western Australian Data Linkage Branch will facilitate the provision of state data. The researchers will have no access to the identifying information used for data linkage.

Evaluation of the role of the Prostate Cancer Specialist Nurse (EC 2012/4/54)

Applicant: Queensland University of Technology
Approval valid until 1 August 2014  

Project summary  

This study involves Prostate Cancer Specialist Nurses (PCSNs) in 13 locations across Australia. It compares health/health outcomes for patients treated for prostate cancer pre-PCSN versus post-PCSN implementation. Data linkage with the NDI for exclusion purposes only will be undertaken.

The QSkin Sun and Health Study (EC 2012/4/57)

Applicant: Queensland Institute of Medical Research
Approval valid until 31 December 2017  

Project summary  

This project involves a cohort of 44,000 Queenslanders aged between 40-69 years with the primary aim of deriving measures of absolute risk and analysing causal factors for melanoma and other skin cancers. The cohort will be followed up by both re-contact and data linkage until at least 2020. Linkage will be undertaken with Australian Cancer Database, National Death Index, Medical Benefits Scheme and Pharmaceutical Benefits Scheme to establish date and cause of death.

Medication adherence following hospitalisation for acute myocardial infarction (EC 2012/4/61)

Applicant: George Institute for Global Health
Approval valid until 30 June 2016  

Project summary  

The aim of this project is to evaluate the impact of adherence and non-adherence to prescribed medication to develop quality indicators of prescribing amongst patients who have been admitted to hospital for acute myocardial infarction (AMI). Linkage will be undertaken with the National Death Index for fact and date of death, and with selected Pharmaceutical Benefits Scheme records.

Linkage to the Australian childhood immunisation register (ACIR) and state-based registers to evaluate and inform Australia's immunisation program (EC 2012/4/62)

Applicant: University of New South Wales
Approval valid until 31 December 2016  

Project summary  

The aim of this study is to measure vaccine uptake and the factors associated with vaccine uptake and timeliness of immunisation. It will evaluate the effectiveness of currently available childhood vaccinations in reducing rates of vaccine preventable and non-vaccine preventable disease at a population level and for at-risk groups. It involves a large birth cohort in Western Australia and New South Wales (approximately 114,000 births). Linkage will be undertaken with a range of state based and Commonwealth based data sets including the National Death Index and the Australian Childhood Immunisation Registry.

Evaluation of the nurse practitioners - aged care model of care program: AIHW related component (EC 2012/4/63)

Applicant: University of Canberra
Approval valid until 28 February 2015  

Project summary  

This project involves an evaluation of a Department of Health and Aging Nurse Practitioner Care Models of Care program which is funding 30 different models of delivering nurse practitioner (NP) services in aged care across Australia. The aim of the evaluation is to assess the effectiveness, economic viability and sustainability of NPs working in the different models from November 2012 to June 2014. One of the evaluation components involves an in depth study of 3,000 clients of NPs in each of 2012 and 2013. Linkage will be undertaken with the National Death Index and hospital morbidity data to enable analysis of the programs impact on the number and type of hospital admissions.

Project extensions and variations approved by the AIHW Ethics Committee during 2012

The Australian Prospective Diabetes Study (APDS) - a five year follow up study of the Australian Diabetes Obesity and lifestyle study (AusDiab) population cohort (EC 358)

Applicant: Baker IDI Heart and Diabetes Institute
Approval valid until 30 June 2017  

Project summary  

This project is a 5 year prospective study established to examine the natural history of diabetes and its complications, including heart disease and kidney disease. It is a follow-up to a completed national diabetes prevalence study - the Australian Diabetes, Obesity and Lifestyle Study (AusDiab) and addresses some of the most important gaps that exist nationally and internationally in the understanding of the burden of Type 2 diabetes and related health problems. Data linkage to the NDI will be undertaken to determine causes of death for the 11,247 participants of the AusDiab population cohort.

National Cancer Statistics Clearing House Protocol (EC 2009/4/56)

Applicant: Australian Institute of Health and Welfare
Approval valid until Ongoing  

Project summary  

The AIHW has sought approval for amendments to the existing National Cancer Statistics Clearing House (NCSCH) Protocol to allow for ongoing expansion in the scope of the Australian Cancer Database (ACD) without the need to seek an amendment from the AIHW Ethics Committee on small individual changes, such as slight changes in data linkage practices and slight changes to the NCSCH protocol necessitated by the development of the National Minimum Data Set for population-based cancer data.

Pharmacist Influence on Prescribing for Risk Factors in Peripheral Arterial Disease (EC 2011/1/1)

Applicant: Flinders Medical Centre
Approval valid until March 2012

The aim of this project is to examine the rate of prescription of risk factors reducing medications to patients with peripheral arterial disease or carotid disease. It will examine the influence that pharmacists have on prescription habits and determine whether they have an impact upon patient outcomes. A group of former Flinders Medical Centre patients will be linked with the National Death Index to obtain date and cause of death information.

Middle East Area of Operations Health Study (EC 2011/1/2)

Applicant: University of Queensland
Approval valid until June 2012

The aim of this project is to investigate mortality and cancer incidence in Australian Defence Force personnel who have been deployed to the Middle East Area of Operations since 2001. Information on the ADF personnel will be linked with the National Death Index in order to obtain date and cause of death for those who have died, and with the Australian Cancer Database.

Impact of Treatment of Obesity on Cancer Incidence and Survival (EC 2010/3/34)

Applicant: Monash University
Approval valid until March 2012

This study involves a comparison between the incidence of cancer and the survival rates of patients whom have undergone surgical weight loss with a similarly aged obese cohort. Information on a group of such patients will be linked with the National Death Index in order to obtain data and cause of death to determine rates of cancer mortality amongst the surgical weight loss cohort.

TasPed - Investigation of the relationship between pedometer measured physical activity and mortality (EC 2011/1/3)

Applicant: University of Tasmania
Approval valid until May 2011

This is a data integration study conducted by the Menzies Research Institute of the University of Tasmania and the Murdoch Institute of the Royal Children’s Hospital designed to investigate mortality and cause of death amongst the subjects of three Tasmanian studies: the Tasmanian Study of Cognition and Gait (TasCog), Tasmanian Older Adult Cohort (TasOac) and the Australian Diabetes, Obesity and Lifestyle (TasDiab). The TasCog and TasOac studies will be linked to the National Death Index, to obtain fact and cause of death and then link those results with the AusDiab study. The aim of the project is to derive information on significant risk factors contributing to mortality by contrasting the environmental and lifestyle factors contained within the Tasmanian surveys against the mortality information. 

Psychopathology following traumatic injury:  screening for high risk (EC 2011/2/9)

Applicant: Adelaide University
Approval valid until July 2012

This project aims to examine mental health impacts following traumatic injury and the role of genetics in the development of post-traumatic stress syndrome (PTSD) and other post-trauma psychopathology. Previously, participants in this project have had their data collected at 3, 6 and 24 month intervals following injury. The current research  aims to collect data at six years post injury to examine the long term outcome of injury through structured clinical interview over the telephone as well as completion of a questionnaire and a saliva sample to examine potential genetic contributors to PTSD. Their list of participants will be linked to the National Death Index to ensure that deceased participants were not contacted.

Investigating the long term psychological impact of bushfire exposure (EC 2011/2/10)

Applicant: Adelaide University
Approval valid until June 2013

This study is the fifth phase of a longitudinal study, which commenced in 1983 following the Ash Wednesday Bushfires. The study is examining the long-term psychiatric outcomes of exposure to a major Australian bushfire in the context of other lifetime trauma, by using an unexposed control sample recruited at the time of the initial disaster. The list of participants will be linked to the National Death Index to ensure that deceased participants were not contacted.

Sedation practices in intensive care in Australia and New Zealand (ANZ SPICE) (EC 2011/2/12)

Applicant: Monash University
Approval valid until June 2012

This study is a prospective observational study of sedation and analgesic practices, level of sedation achieved, adequacy of pain relief and development of delirium during the intensive care stay of patients on a breathing machine. A list of patients will be linked to the National Death Index to obtain date of death in order to establish the survival status of patients 180 days after enrolment in the study.

Determining the impact of opioid substitution therapy upon mortality and recidivism among prisoners:  a 22-year data linkage study (EC 2011/2/13)

Applicant: Burnet Institute
Approval valid until 31 December 2013

This study is to quantify the population-level impact of opioid substitution therapy on mortality (both in prison and following release) and recidivism for opioid dependent prisoners in NSW. Data on participants in this study will be linked to the National Death Index, (45,700) to obtain date and all cause of death in order to analyse survival and risk of death by a range of factors.

The Geelong Osteoporosis Study:  a population-based study (EC 2011/2/14)

Applicant: Barwon Health (University of Melbourne)
Approval valid until June 2013

This project aims to examine fractures (hip and non-hip) and other exposures as risk factors for mortality, using data from the population-based Geelong Osteoporosis Study. The project previously related only to the female members in the study.  The project has been expanded to include  all people in the Study (males and females) to 31 December 2010, and to also investigate further exposures as risk factors for mortality. All people in the study will be linked to the National Death Index to obtain fact and date of death.

The Australian and New Zealand Diabetes and Cancer Collaboration (EC 2011/2/15)

Applicant: Baker IDI Heart and Diabetes Institute
Approval valid until June 2014

The aim of this study is to determine whether diabetes is associated with an increased risk of all cause and site specific cancer in Australians. Approximately 150,000 names (collected from 19 sites) will be linked to the National Death Index to obtain fact and date of death, age of death (in 5 year age group), causes of death and postcode at death, and with the Australian Cancer Database to obtain information on cancer diagnosis.

National Diabetes Register – linkage with the National Death Index (EC 2011/2/17)

Applicant: Australian Institute of Health and Welfare
Approval is ongoing

The National Diabetes Register is an on-going population-based register of people living in Australia with insulin-treated diabetes who began using insulin to manage their diabetes on or after 1 January 1999. Ongoing linkage will be carried out with the National Death Index in order to establish fact and date of death of the registrants.

Validation of the Enhanced Indigenous Mortality Database using NSW Native Title register data (EC 2011/2/19)

Applicant: Australian Institute of Health and Welfare
Approval valid until June 2012

The aim of this project is to validate the Indigenous status in the Enhanced Indigenous Mortality Database. The researcher will be testing the validity of the Indigenous status through linkage of the Enhanced Indigenous Mortality Database with the Native Title Services Corporation research database, a register of NSW Aboriginal people, informed by evidence from a wide range of sources of the connection between Aboriginal families and their traditional lands.
The linkage of the Enhanced Indigenous Mortality Database and the Native Title Services Corporate database will take place at the Native Title Office and will be carried out by an AIHW staff member. A Project Advisory Committee has been established which will assess the integrity of the results of this research.

Health-related quality of life and long term survival of patients after cardiac surgery (EC 355)

Applicant: Dept of Cardiac and thoracic Surgery, Flinders Medical Centre
Approval valid until 1 April 2016

This project is to determine the association between health-related quality of life, clinical measures and long-term survival after heart surgery.  Pre- and post-operative data and on patients admitted for heart surgery at the Cardiac and Thoracic Surgical Unit a Flinders Medical Centre will be linked with the National Death Index.

The Australian Mesothelioma Registry (EC 2011/3/22)

Applicant: The Australian Mesothelioma Registry
Approval valid until August 2016

This study is to gain a better understanding of the exact relationship between asbestos exposure and mesothelioma.  The Australian Mesothelioma Registry collects data of all new cases of mesothelioma diagnosed from 1 July 2010.  The Registry monitors incidence and mortality, and identifies patterns of occupational and environmental asbestos exposure. 

Linkage to the National Death Index will be carried out each year to obtain fact, state/territory, date and all causes of death in order to determine survival rates in relation to demographics, diagnosis information (such as type of mesothelioma) and cause of death. 

Risk factors for premature mortality and the development of cardiovascular disease and related conditions in Indigenous Australians:  follow-up of the DRUID study cohort

Applicant: Menzies School of Health Research, Royal Darwin Hospital
Approval valid until December 2015

This project is a follow up of the Diabetes and Related conditions in Urban Indigenous people in the Darwin Region (DRUID) study population to determine cardiovascular disease (CVD) and related outcomes (e.g. heart disease, strokes, diabetes and kidney disease deaths). The aim is to improve the understanding of CVD risk in Indigenous people, and develop better clinical tools to assist in CVD prevention and management.  Linkage of the DRUID study population to the National Death Index will be undertaken to obtain date and all causes of death, and year and state/territory of registration.

Australian cohort study of cataract surgical patients:  does correction of visual impairment by cataract surgery improve survival (EC 2011/3/24)

Applicant: Centre for Vision Research, Dept of Ophthalmology, University of Sydney
Approval valid until August 2012

This project is to assess medium and long-term mortality among older persons who had cataract surgery to correct visual impairment, and compare the mortality rate of older persons of similar age who remained with visual impairment due to cataract or other ocular diseases.  Linkage  of cataract surgery patients aged 64+ years from the Westmead Hospital Eye Clinic (2004–07) to the National Death Index will be performed to obtain fact of death, and date and cause of death.

Predictors of cardiovascular mortality in rural Victoria (EC 2011/3/25)

Applicant: Heart Research Centre, Royal Melbourne Hospital
Approval valid until September 2012

This study aims to determine predictors of CVD mortality for rural Victorians, and to assess the accuracy of current tools for measuring CVD risk in a rural population.  Data from the Rural Risk Factor Prevalence Survey will be linked with the National Death Index to obtain information on mortality, including fact, date and cause of death and state/territory of death registration.

Molecular epidemiology of ovarian cancer:  The Australian Ovarian Cancer Study (AOCS)(survival sub-study) (EC 2011/3/27)

Applicant: Gynaecological Cancers Group, Queensland Institute of Medical Research
Approval valid until December 2015

The Australian Ovarian Cancer Study (AOCS) is a population-based case-control study that has generated valuable new information regarding genetic and environmental risk factors for ovarian cancer. The majority of the patients in the study were diagnosed with ovarian cancer more than 5 years ago. The aim of the AOCS survival sub-study is to conduct a longitudinal follow-up of the AOCS group (about 4,100 participants) to evaluate the role of genetic and environmental factors in determining survival. Linkage of the group with the National Death Index will be performed to obtain date and all causes of death, and state/territory of registration.

A model for a national, anonymised, retrospective population-based tumour biobank (EC 2011/1/4)

Applicant: Prince of Wales Clinical School, University of New South Wales
Approval valid until 31 July 2015

This study is to access and analyse tissue samples for three groups of people diagnosed with cancer for the purpose of examining the association between tumour factors and cancer incidence, and prognosis between groups with known immune deficiency and a control group with no known immune deficiency. 

Linkage will be performed using two groups (one of people infected with Human Immunodeficiency Virus  and the second of organ transplant recipients) and the Australian Cancer Database.

The childhood determinants of adult health (CDAH) cohort study (EC 2011/3/28)

Applicant: Menzies Research Institute of Tasmania, University of Tasmania
Approval valid until 28 February 2014 

The Childhood Determinants of Adult Health (CDAH) Study is a follow-up to the 1985 Australian Schools Health and Fitness Survey (ASHFS), a nationally representative study of 8,498 children aged 7–15 years. Using data from repeated measures of lifestyle, physical characteristics and mental health collected since childhood, the study’s aims are to determine the contribution of childhood factors to the risk of developing cardiovascular disease (CVD), type 2 diabetes and depression in adulthood.  The second followup (CDAH-2) has recently been completed and has collected information on risk factors for disease.  Linkage of the study group to the National Death Index will be performed to obtain fact and date of death, and all causes of death.

Outcomes of surgical aortic valve replacement in octogenarians (EC 2011/3/20)

Applicant: Department of Cardiothoracic Surgery, Royal Prince Alfred Hospital
Approval valid until 15 November 2012

The aim of the study is to evaluate surgical outcomes of octogenarian patients undergoing conventional aortic valve replacement.  The results will inform future clinical decision making and selection of patients for surgery. The study includes all patients who underwent surgery during a five-year period at two hospitals.  Linkage to the National Death Index will be undertaken to obtain date and causes of death where applicable.

Linkage of the Geelong Hospital ICU database with the National Death Index (EC 2011/3/21)

Applicant: Barwon Health
Approval valid until November 2018

The Geelong Hospital ICU database contains complete clinical datasets for over 16,000 consecutive ICU admissions.  Although it contains details of hospital outcomes it has no other long-term outcome data.   Linkage of the database to the National Death Index will be undertaken to obtain date of death, all causes of death, and state and year of registration.

HCV Incidence Cohort:  10 year mortality study (EC 2011/4/33)

Applicant:  Kirby Institute, University of New South Wales
Approval valid until December 2012

This study aims to examine the 10 year mortality rates and causes of death in a NSW group of injecting drug users (IDUs) enrolled in the Hepatitis C Virus (HCV) Incidence Study. Linkage to obtain date and cause of death from the National Death Index will be undertaken.  Matching was to be done by date of birth, gender and the first two letters of first name and of surname (rather than full name).  IDUs are expected to have greater mortality than the general population.

Investigating vaccine safety via cross jurisdictional data linkage of the Australian Childhood Immunisation Register with hospital morbidity data (EC2011/4/34)

Applicant: University Department of Paediatrics, Womens and Children's Hospital, Adelaide
Approval valid until 30 December, 2012

The object of this part of the ARC-funded VALiD study is to determine whether there are increases in the incidence of admissions to hospital and/or attendances to Accident and Emergency departments for selected adverse events within a defined risk period following childhood vaccination. The Australian Childhood Immunisation Register will be linked with hospital and emergency department data from three states for children up to 7 years for the period from 2003 to 2010.

National Diabetes Services Scheme (EC 2011/4/35)

Applicant: Diabetes Australia
Approval is ongoing

The National Diabetes Service Scheme (NDSS) is an Australia-wide program, established in 1987, which provides testing strips, syringes and needles at subsidised prices to people with diabetes. The scheme is administered by Diabetes Australia on behalf of DoHA. The NDSS database will be linked to the National Death Index to establish fact and date of death in order to maintain the database. This would ensure accurate reporting of diabetes statistics from the database, including the number of people using the scheme, and help ensure that Diabetes Australia does not send material to deceased registrants.

Diabetes Care Project (EC 2011/4/38)

Applicant: McKinsey and Company
Approval valid until June 2014

The Diabetes Care Project (DCP) is a three-year pilot of a new model of healthcare delivery designed to improve care for people with diabetes. A consortium, led by global management consultancy McKinsey and Company, has been appointed to deliver the pilot for the Department of Health and Ageing (DoHA). The pilot will involve up to 150 practices in three states, and will compare results between two intervention groups of general practices and a control group, to enable a rigorous evaluation of the outcomes. Participation will be voluntary for consumers and healthcare providers.

The project will evaluate whether new models of care can deliver better quality healthcare outcomes, enable care to be provided in more flexible ways, improve patient and practitioner experiences, and prove economically sustainable and scalable nationally. The project will test technology systems to enable better information sharing, a flexible funding model that will include improvement support payments for practices, a Care Facilitator role to manage the integrated care approach and an education and training program for consumers and healthcare professionals.

With patient consent, the project includes the linkage of data from the Medicare Benefits Scheme, Prescription Benefits Scheme, Hospital records and the National Diabetes Services Scheme.

Amended protocol for data supply and linkage of National Diabetes Services Sheme data for compilation of the National Diabetes Register (EC 2011/4/36)

Applicant: Australian Institute of Health and Welfare
Approval is ongoing

The National Diabetes Register (NDR) is a population-based registry of people living in Australia who began using insulin to manage their diabetes on or after 1 January 1999. The NDR is linked to the National Death Index to establish fact and date of death of the registrants to inform analyses and also maintain the register for use in epidemiological or clinical studies.  The linkage will now be carried out every six months.

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Project extensions and variations approved by the AIHW Ethics Committee during 2011

National Diabetes Service Scheme (EC 2008/3/17)

Applicant: Baker IDI Heart and Diabetes Institute
Approval valid until March 2014

This study involves the use of  the Australian Cancer Database and using a prior cohort created through linkage with the National Death Index and Australian National Diabetes Service Scheme database in 2010 to determine whether individuals with diabetes are at an increased risk of suffering from cancer than those without diabetes. 

Suicide among Workers’ Compensation Claimants in South Australia (EC 2009/4/46)

Applicant: The Flinders University of South Australia
Approval valid until November 2011

The project aims to measure the rate of suicide amongst worker’s compensation claimants in comparison to rates in segments of the South Australian population, assess relationships between suicide and characteristics of workers making compensation claims and identify risk factors for suicide amongst claimants. The research involves linkage to the National Death Index of approximately 640,000 cases of suicide in South Australia that occurred between July 1990 and June 2006 to obtain fact of death, all causes of death and jurisdiction in which the death occurred.

Rates of Unplanned/Unexpected Readmissions Following Select Surgical Procedures and Medical Conditions (EC 2009/3/41(3))

Applicant: The Flinders University of South Australia
Approval valid until November 2011

This project involves data linkage of subsets of the National Hospital morbidity database to enable annual calculation of rates of unplanned/unexpected readmissions for schizophrenia and bipolar disorder for the OECD Health Care Quality Indicators Data Collection 2010–2011 and for future years of the same collection.

Does echocardiography predict outcome in diabetes patients? (EC404)

Applicant: Austin Health
Approval extended to December 2013

The aim of this project is to assess the predictive value of echocardiography in patients with diabetes against the current standard clinical and biochemical markers. A group of 400 patients with diabetes, who underwent echocardiography and blood sampling, were linked with the National Death Index to obtain date and cause of death. 

The scope of the study is being expanded with a further linkage of this group to the National Death Index to enable further recruitment of participants and enable a 10-year analysis of adverse cardiac outcomes in all study participants. 

Living with Diabetes Study (EC 2009/2/17)

Applicant: University of Queensland
Approval extended to June 2012

This project is a cohort study of approximately 4,000 people with diabetes conducted by the University of Queensland Medical School.  The study aims to understand the many factors that influence the health and well-being of people living with diabetes mellitus, and will identify social, health and lifestyle factors associated with quality of life for people with diabetes, and track their experience with the health care system. 

Annual linkages were undertaken between 2009 and 2011 to the National Death Index to obtain fact and date of death, death registration year, death registration state, underlying cause of death and additional causes of death. 

Health-related quality of life and long term survival of patients after cardiac surgery (EC 355(2))

Applicant: Flinders Medical Centre
Approval valid to April 2016

The researcher first sought approval on 25 May 2004 for the integration of a cohort of patients over the age of 80, who had undergone heart surgery, to be linked to the National Death Index to determine state of registration and date of death. The researcher in this application sought approval to integrate all patients who had undergone heart surgery to the National Death Index to obtain date, state of registration and all causes of death.

The Australian Paediatric Cancer Registry (EC 379(2))

Applicant: Cancer Council Queensland
Approval valid until May 2016

The Registry is a collection of information on the incidence, stage, treatment and survival of all children diagnosed with cancer, aged between 9 and 14 years, in Australia, since 1983. The researcher sought approval to continue ongoing integration with the National Death Index and also to access the Australian Cancer Database, on an ongoing basis, to obtain additional information (second and subsequent cancers in existing cases). The Committee noted that approval would be required from the States and Territory ethics committee and data custodians for access to the Australian Cancer Database.  The Committee noted that the researcher sought approval for access to the ACD on an ongoing basis and granted approval to May 2016.

Linking the Supported Accommodation Assistance Program, Child Protection and Juvenile Justice Data Collections (EC 2008/3/29)

Applicant: Australian Institute of Health and Welfare
Approval valid until April 2012

This project involves linkage of the Supported Accommodation Assistance Program and Juvenile Justice Data Collections and available jurisdictional child protection data to enable an analysis of movements between these sectors and of the characteristics of young people who are involved in more than one sector.  Approval was extended to April 2012.

Analysis of aged care service use patterns (EC 2008/3/28)

Applicant: Australian Institute of Health and Welfare
Approval valid until March 2012

This project involves an extension of the NH&MRC-funded project Care pathways for older Australians (EC 410) which links national aged care data to inform key policy developments. It builds upon the previous project to include additional data to enable analyses that cover recent program initiatives, including extended aged care at home packages for people with dementia (EACH Dementia) and transition care. The inclusion of more data also enables more powerful longitudinal analyses and the analyses of trends over a longer time period.

The project involves updating the existing linked data set created for the Care pathways project up until 2007-08. The data sets being linked include those for aged care assessment, residential aged care, community aged care and extended aged care at home packages, home and community care, and veterans’ home care. Linkage to the National Death Index will also be done for the purpose of determining those aged care clients who have died. All data linkage will be carried out within the AIHW.

Data linkage to produce non-duplicated client counts for National Healthcare Agreement Performance Indicator #21:  treatment rates for mental illness (EC 2010/3/39)

Applicant: Australian Institute of Health and Welfare
Approval valid until August 2012

This project involves the linkage of data from the Community Mental Health Care National Minimum Data Set (supplied by jurisdictions to the AIHW) and Medicare Benefits Scheme claims data (provided by Medicare Australia or the Department of Health and Ageing) by the AIHW Data Linkage Unit.  The linked dataset will be used for performance reporting under the National Healthcare Agreement.  An extension was granted until August 2012 due to delays in obtaining approvals for access to the data. 

Hospital use by people in residential aged care (EC 2009/4/55)

Applicant: Australian Institute of Health and Welfare
Approval valid until June 2012

This project involves the linkage of Residential Aged Care and National Hospital morbidity datasets 2008/09 using date of birth, sex, postcode, hospital and residential aged care episode characteristics, and dates of separation and admission in order to undertake analysis of movements between hospital and residential aged care facilities.  The Residential Aged Care data is also being linked to the National Death Index to determine date and cause of death for those people who have died.

Mothers who die: a national population study of mothers dying in pregnancy and in the first year after the end of pregnancy

Applicant: Australian Institute of Health and Welfare
Approval valid until December 2012

This project involves the linkage of state and territory perinatal data (approximately 37,000 records) for the period 1997 to 2009 with the National Death Index, to obtain date of death, place of death, pregnancy flag and cause of death and subsequent integration with the National Perinatal Data Collection for expert categorisation of deaths as direct, indirect or incidental deaths.  The project is being extended to include data for 2009 and 2010 and also the following additional items from the perinatal collections: body mass index, number of antenatal visits PSANZ cause of death of baby, socio-economic index for areas, remoteness and assisted reproductive technology. Approval was granted.

Use of aged care programs (further extension to Pathways in Aged care (EC 2008/3/28 and EC 40)

Applicant: Australian Institute of Health and Welfare
Approval valid until December 2012

This project is a further extension of the projects Care pathways of older Australians (EC 410) and Analysis of aged care programs (EC 2008-3-28, see above) funded by the Department of Health and Ageing. This work, like those projects, involves the linkage of data for six aged care programs as well as the National Death Index, in this case for a further three years from 2008-09 to 2010-11.  The linkage will thus be updated with the most currently available data including recent program initiatives and expansions, to enable analyses of particular questions of policy interest regarding the patterns of use of aged care programs by older Australians. Particular analyses will focus on the characteristics of people who are eligible but don’t take up services or take up a different service than recommended, and whether the use of community services delay entry to permanent residential aged care.