Approved AIHW linkage projects

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. It is anticipated that in the second half of 2019, 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.

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:

• Determine any inequalities (according to income group, Indigenous status, and geographic location) in cancer incidence
• Quantify any inequalities (according to income group, Indigenous status, and geographic location) in healthcare use and healthcare expenditure
• 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:

• 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
• Compare health system use, health system expenditure, and out-of-pocket expenditure with clinical outcomes
• 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:

• Compare antipsychotic mortality rates with those of the general population
• Identify the magnitude of the association psychiatric medication use and mortality (all causes)
• 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:

• Continual review of TAVI outcomes
• Identify predictors of post-surgical outcomes to facilitate pre-operative risk stratification
• 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.

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 Childrens 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 blood-borne 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.

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 desease 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 Natiional 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 Opoid 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 Childrens 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 Tratment 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 brest 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 mortaility amoung people diagnosed with hepatitis C or hepatitis B virus invection 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 betweem 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 childrens 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 transiet 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 Cncer 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 focussed 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 lioss 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 Interventianal 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 Houising (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 ofNew 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, focussing 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-fundeded 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 Childrens 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.