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.
Concord Health and Ageing in Men Project (CHAMP) (EO2017/3/312)
Applicant: University of Sydney
Approval valid until: 31 May 2020
This study is a continuation of the Concord Health and Ageing in Men Project (CHAMP), an epidemiological study that investigated the prevalence and burden of disease of various age-related impairments, including cognitive decline and dementia, incontinence, reduced mobility and functionality in older Australian men. Study participants are assessed at baseline, and then followed-up after two years, after five years and after eight years. The CHAMP commenced in 2005, initially collecting data from a cohort of 1,705 men aged 70 years and over.
This study has the following objectives:
- enhance the existing evidence-base regarding health trajectories of older Australian men
- understand the relationships among health behaviours, chronic health conditions and the use of aged care services
- understand the impact use of aged care services have on quality of life, cognitive functioning, medication use and mortality.
This study will broaden the scope of data collected in the CHAMP by including data from a National Aged Care dataset and mortality data. The CHAMP cohort will be linked to the Pathways in Aged Care (PIAC) database and the National Death Index (NDI).
The PIAC will provide important data about aged care program utilisation, and the NDI will provide important mortality data about deceased CHAMP study participants.
Study findings will inform healthcare policy designed to improve the quality of life and functionality of older Australian men.
Costs of Surviving Cancer—a Queensland study (COS–Q) (EO2017-3-348)
Applicant: University of the Sunshine Coast
Approval valid until: 01 January 2023
This study examines long-term health service usage and associated costs for cancer survivors in Queensland, according to time since diagnosis. This study has the following objectives:
- quantify cancer patients’ health service usage, over time
- identify factors associated with higher health service use and higher costs
- estimate lifetime health service use and costs
- identify opportunities to improve future health service delivery.
The study cohort consists of approximately 475,000 individuals, diagnosed with cancer in Queensland (QLD) over the past 15–20 years. This data will be drawn from the QLD Cancer Registry.
Study cohort data will be linked to the National Death Index, the Australian Cancer Database, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme.
Study findings will contribute to the development of economic models to estimate lifetime outcomes of cancer survivors, according to cancer type. A better understanding of cancer survivors’ long-term health trajectories will inform healthcare policy to improve quality of life, reduce the risks of further cancers developing and decrease mortality rates.
Using registry, administrative and research data to prevent deaths from breast cancer in Australia (EO2017/3/361)
Applicant: University of South Australia and South Australian Health and Medical Research Institute (SAHMRI)
Approval valid until: 31 August 2020
The prevalence of breast cancer and its burden of disease is well documented. It is currently one of the most prominent causes of mortality in women. Over the years, there have been significant advancements in evidence-bases for detecting breast cancers, particularly early detection, and treating breast cancers. Despite these medical advancements, breast cancer continues to be a leading cause of mortality.
This study will develop a large, population-based breast cancer database to investigate trends and differences in the prevalence and burden of disease, according to a multitude of variables including: demographic status (e.g., age, sex, remoteness, socioeconomic status); medical comorbidity; screening history and frequency; treatment utilisation and timeliness; survival rates.
The study cohort will consist of approximately 16,000 women, diagnosed with breast cancer from 01 January 2000 to the present, in South Australia (SA). Data will be drawn from the SA Cancer Registry.
Study cohort data will be linked to the National Death Index, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme.
Study findings will inform healthcare policy designed to improve the detection and treatment of breast cancer. Findings will also enable healthcare providers to reduce the burden of disease, and mortality rates, associated with breast cancer.
Inequalities in health service utilisation, morbidity and mortality of cardiovascular disease in Queensland adults: A longitudinal cohort study (EO 2017/3/362)
Applicant: Griffith University
Approval valid until: 31 December 2020
Cardiovascular disease (CVD) is the leading cause of death in Australia. Historically, lifestyle factors (e.g., poor diet, smoking, alcohol use and sedentary lifestyles) have accounted for differences in the prevalence and burden of disease of CVD. Despite significant advances, over the years, in the availability and quality of healthcare services, healthcare utilisation may also be an important factor.
This study investigates healthcare service use and costs of care associated with CVD. Specific aims of this study are:
- compare associated health service utilisation for patients with CVD
- determine prior use of relevant cardiovascular and circulatory health services and medications
- investigate the cost of care for various CVD.
The study cohort will consist of adult patients who had a cardiovascular event and presented to a Queensland hospital in 2010. Study cohort data will be linked to the National Death Index, the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme.
Healthcare providers will use study findings to improve the management of patients with CVD, thereby reducing the associated burden of disease. Findings will also inform healthcare policy to enhance the availability and accessibility of healthcare services for individuals with CVD.
Medicare-derived patient and sibling links (EO2017-3-372)
Applicant: Australian Taxation Office
Approval valid until: 16 May 2018
The Australian Taxation Office (ATO) has produced a de-identified longitudinal data collection using tax and superannuation information called the Australian Longitudinal Individual File (aLife). This is an enduring data collection (currently covering from 2000 to 2016) that will be used for social welfare and economic research, including intergenerational income mobility and household inequality. De-identified samples of aLife will be made available to ATO-approved external researchers through the Secure Unified Research Environment (SURE).
To facilitate intergenerational and household-level research, family groupings were derived in the aLife data collection using information held by the ATO.
To further enhance the accuracy of the aLife family groupings data from the aLife collection will be linked to the MBS in order to derive a flag to indicate groups of records relating to the same Medicare card. No identified information will be provided to the ATO.
This project will enable the ATO to undertake intergenerational public policy research, such as:
- understanding household health and welfare impacts of the tax and transfer system
- understanding household labour market decisions
- understanding household responses to tax and transfer system
- estimating intergenerational income mobility and household inequality.
Study findings will improve the quality of public policy research, investigating welfare and economic issues affected by intergenerational income mobility and household inequality.
Improving access to primary care for Aboriginal babies in Western Australia (EO2017/4/368)
Applicant: University of Western Australia
Approval valid until: 1 November 2020
This study investigates the effectiveness of a model of primary healthcare designed to enhance accessibility to healthcare and reduce hospitalisation rates in Western Australian Aboriginal infants, aged less than three months. This study will also investigate the timing of Medicare enrolment, immunisation rates in the first six-months of life, and utilisation rates of routine child health checks.
Specific objectives are to determine if best practice levels in access to primary care can improve:
- child health screening assessments in Aboriginal infants, aged less than three months
- immunisation coverage in Aboriginal infants, aged less than six months.
The WA Data Linkage Branch (WA DLB) will prepare a study cohort by drawing approximately 4,300 Aboriginal babies, born between October 2015 and April 2018, from the Western Australian Registry of Births, Deaths and Marriage. WA DLB will link the study cohort to hospital and emergency data.
The AIHW will link the study cohort to the Medicare Benefits Schedule and the Australian Immunisation Registry.
Study findings will inform health policies and practices, designed to enhance the health and well-being of Aboriginal and Torres Strait Islander people.
Towards optimising hospitalised older adults’ medications (EO2017/4/373)
Applicant: University of Sydney and Royal North Shore Hospital
Approval valid until: 1 September 2020
Medicating older patients, particularly those experiencing dementia and those approaching the end of their lifespan, poses significant challenges to healthcare professionals. Older patients are a highly vulnerable group due to an increased susceptibility to medication side effects, age-related cognitive decline and a tendency to present with multiple medical complaints. This last factor—comorbid medical conditions—often necessitates polypharmacy use to manage multiple symptoms and multiple side effects.
In recent years, a major limitation of polypharmacy use in older patients has been the unnecessary prescription (and use) of certain medications. For example, one in five medications prescribed to older patients has been unnecessary, even harmful.
This study investigates the prevalence of unnecessary, even inappropriate, polypharmacy use in hospitalised older patients. It also investigates the effectiveness of an intervention to reduce the incidence of inappropriate polypharmacy use in older patients.
This study will draw data from several NSW administrative health datasets:
- NSW Admitted Patient Data Collection
- NSW Emergency Department Data Collection
- NSW Registry of Births, Deaths and Marriage
- NSW Cause of Death Unit Record File
The Centre for Health Record Linkage will link these datasets to prepare a study cohort. The AIHW will link the study cohort to the Pharmaceutical Benefits Scheme.
Study findings will inform an evidence-base regarding the prevalence and management of inappropriate polypharmacy in hospitalised older people. Findings will also inform health practice policies to reduce the incidence of inappropriate polypharmacy use in older people and adverse side effects. Healthcare professionals can use study findings to improve the care of older hospitalised patients.
Eating As Treatment (EAT: a stepped-wedge, randomised controlled trial of a health behaviour change intervention provided by dieticians to improve nutrition in patients with head and neck cancer undergoing radiotherapy) (EO2017/4/384)
Applicant: University of Newcastle
Approval valid until: 31 December 2023
The EAT—a randomised, controlled study collecting data from hospital patients in five states—examined the effectiveness of a psychological intervention to treat malnutrition (and any related psychological symptoms, such as depression and anxiety) in head and neck cancer patients undergoing radiotherapy. The EAT study found that the intervention was effective in enhancing nutritional status and quality of life, while reducing psychological symptoms.
Study investigators wish to establish survival outcomes of EAT study participants and, in particular, whether the intervention is effective in reducing mortality rates.
The EAT study will be linked to the National Death Index to examine survival outcomes and to identify important mortality data for any deceased participants.
Study findings will inform an evidence-base for the management of treatment side effects, such as malnutrition and psychological symptoms, in cancer patients undergoing radiotherapy. Healthcare professionals will use study findings to reduce psychological distress among cancer patients, thereby enhancing quality of life.
An empirical framework for assessing mortality and morbidity in people with psychotic illness: 7 year follow-up and 10-year retrospective analysis of 2,075 Survey of High Impact Psychosis (SHIP) participants using linked mortality and health registers (EO2017/5/236)
Applicant: University of Western Australia
Approval valid until: 31 December 2020
This study will examine mortality and morbidity outcomes in patients with psychotic illness. Data will be drawn from the National Survey of High Impact Psychosis (SHIP) study.
This study has the following aims:
- establish Australian benchmarks about mortality and morbidity to monitor the impact of public health policies and procedures on changes in mortality and morbidity rates
- reformulate risk prediction for cardio-metabolic disease, specifically for individuals with severe mental illness
- calculate the economic burden of mortality and morbidity related to psychotic illness, from both a governmental and societal perspective.
SHIP cohort data will be linked to the National Death Index to establish survival outcomes and to obtain relevant mortality data.
Study findings will inform health policies designed to enhance the care and management of patients with psychotic illness.
The nature and frequency of health contacts in victims and perpetrators of family violence (EO2017/5/380)
Applicant: Swinburne University of Technology
Approval valid until: 31 December 2019
Family violence victims experience significant psychological distress, such as depression, anxiety, substance abuse and, in severe cases, suicide. Victims also report prominent physical ailments such as cardiovascular and gastrointestinal complaints, and previous studies have found elevated use of health services and medication in family violence victims.
Conversely, little is known about the physical health complaints and psychological distress that family violence perpetrators may experience.
This study investigates health service use among victims and perpetrators of family violence. Family violence data (for approximately 6,000 individuals) will be drawn from Victorian Police records. The Victorian Data Linkage Unit will prepare a cohort by linking this data to the following Victorian data sources:
- Public Mental Health Data
- Admitted Episodes Dataset
- Emergency Minimum Dataset.
To obtain data about the use of healthcare services and medication, the AIHW will link the study cohort to the following Commonwealth datasets:
- Medicare Benefits Schedule
- Pharmaceutical Benefits Scheme.
Study findings will inform improvements to existing police protocols designed to manage family violence incidents and the allocation of targeted community resources to manage family violence. Healthcare providers will use study findings to assist victims to manage the physical health and psychological consequences of family violence. In addition, where psychological distress is a risk factor for perpetrating family violence, findings will have implications for developing diversionary programmes to reduce family violence rates.
Healthwise Cancer and Mortality Study (EO2017/5/382)
Applicant: Monash University
Approval valid until: 1 February 2031
The Healthwise Cancer and Mortality Study is a longitudinal investigation of adverse, occupational health outcomes among workers at Alcoa, an Australian aluminium treatment and processing facility. The tendency for any adverse health outcomes—cancer and, in severe cases, mortality—to have a delayed onset has meant that extensive follow-up study is required to monitor the incidence over time.
This study extends the original work undertaken in the Healthwise Cancer and Mortality Study by establishing the incidence and prevalence of cancer and mortality, over time, among Alcoa workers. Specifically, this study will examine cancer incidence, according to primary site, and whether this incidence and any mortality are linked to occupational exposure.
The study cohort consists of approximately 12,500 Alcoa workers. Data will be linked to the National Death Index to identify any deceased individuals, and to the Australian Cancer Database to identify any individuals diagnosed with cancer. Several repeat linkages will be undertaken to monitor the incidence of cancer and mortality over time.
Study findings will inform an evidence-base about any relationships between occupational exposure and adverse health outcomes among Alcoa workers. Healthcare providers can use study findings to manage any risks of occupational exposure.
QUIET-IPF Study: Quality of LIfE and Costs AssociaTed with Idiopathic Pulmonary Fibrosis (EO2017/5/389)
Applicant: Menzies Institute for Medical Research (University of Tasmania)
Approval valid until: 31 December 2021
Idiopathic pulmonary fibrosis (IPF) is a debilitating condition which affects the lungs. Currently, no effective treatments are available, and life expectancy is usually between two and four years. In response to this poor prognosis, researchers developed and implemented the QUIET-IPF (Quality of LIfE and Costs AssociaTed with Idiopathic Pulmonary Fibrosis) study to quantify the health economic and quality of life burdens associated with IPF.
This linkage project will extend the QUIET-IPF study by examining survival outcomes and health service use among IPF patients. It will recruit study participants from the Australian IPF Registry. Data will be linked to the National Death Index.
Study findings will facilitate the development of an IPF health economics model to enable health economic evaluations of new treatments and interventions.
Quality Assurance Head & Neck Database and Central Nervous System Database Projects (EO2017/5/392)
Applicant: Prince of Wales Hospital
Approval valid until: 31 December 2018
To facilitate the management of cancer patients, including the provision of treatment in accordance with best practice standards, the Prince of Wales Hospital developed the Head and Neck and Central Nervous System databases. Healthcare providers routinely use these databases to monitor patient progress, to ensure that all treatment is consistent with international standards, and, in the event of mortality, to establish whether this was related to a primary cancer or an unrelated medical condition.
This study aims to identify cause/s of death and survival time from the date of cancer treatment and whether treatment modifications are required to improve quality of life and survival.
Approximately 2,000 cancer patients received treatment at the Prince of Wales Hospital between 1967 and 2016.This cohort will be linked to the National Death Index to examine survival outcomes and to obtain mortality data for any deceased patients.
Study findings will inform protocols designed to enhance the care and management of cancer patients at the Prince of Wales Hospital to maximise quality of life, while reducing mortality rates.
Long-term effects of erythropoietin in patients with moderate to severe traumatic brain injury: A follow-up study of an international randomised controlled trial (EO2017/5/393)
Applicant: Monash University
Approval valid until: 1 February 2019
Traumatic Brain Injury (TBI) is characterised by marked impairment and disability, and in severe cases can lead to death. Prognoses among TBI patients are poor and the World Health Organisation has forecasted that by 2030 TBI will be the third leading cause of disability.
The EPO-TBI study conducted between 2010 and 2015, is one of the few studies that examined the effect of erythropoietin on survival outcomes. Findings revealed lower mortality rates among TBI patients treated with erythropoietin, compared to those treated with a placebo. However, it is unclear whether this effect remains, even after several years following erythropoietin treatment.
This linkage study investigates survival outcomes in patients from the original EPO-TBI study. There were 226 living patients at the end of the original study.
Data will be linked to the National Death Index to identify deceased patients and to obtain the causes of death.
Study findings will contribute to the design of future randomised controlled trials for this highly debilitating condition.
Biomarkers in younger-onset neurocognitive disorders (B_YOND) (EO2017/5/398)
Applicant: NorthWestern Mental Health, Neuropsychiatry Unit
Approval valid until: 30 September 2021
Young-onset dementia (YOD), a neurological condition diagnosed before age 65 years, affects about 26,000 people in Australia. It usually occurs during middle-age—when many people are at the peak of their occupational functioning and income-earning capacity and/or are parenting children. People with YOD display marked impairment in a multitude of domains.
This study examines the cognitive, psychiatric and neurological effects of YOD. Primary healthcare providers will use study findings to identify YOD patients at risk of adverse health outcomes to improve their care and management.
Data will be linked to the National Death Index to investigate survival outcomes and to obtain relevant mortality data.
A surveillance system to monitor the incidence of diagnosed hepatitis C re-infection in New South Wales residents who have received direct-acting anti-viral therapy for hepatitis C infection (EO2017/5/403)
Applicant: NSW Health
Approval valid until: 31 December 2021
In Australia, about 90 per cent of new hepatitis C infections arise from unsafe injecting drug use. Healthcare providers have used various pharmaceutical interventions to treat hepatitis C infections.
To reduce the incidence of hepatitis C infection, the Australian Government listed direct acting antiviral (DAA) medications on the Pharmaceutical Benefits Scheme in March 2016. Studies have shown that DAAs have been highly efficacious in treating hepatitis C infection, with efficacy rates of 95 per cent.
In response to the high rates of injecting drug use, combined with the elevated rates of hepatitis C infection, the NSW Government implemented a surveillance system to monitor hepatitis C infection (and re-infection) rates in NSW residents receiving DAA medications.
This study examines rates of hepatitis C infection, following DAA medication use, particularly for NSW Aboriginal and Torres Strait Islander people for whom notification rates are eight-and-a-half times higher than for non-Indigenous Australian individuals.
Data will be linked to the Pharmaceutical Benefits Scheme, and also the National Death Index to identify deceased study participants to be excluded from the study. Study findings will inform health policies, designed to assist healthcare providers to treat patients with hepatitis C infection, reducing the associated burden of disease.
Health service access for children entering out-of-home care in Victoria (EO2017/5/405)
Applicant: Murdoch Children’s Research Institute
Approval valid until: 31 December 2021
Children in out-of-home care have historically presented with marked levels of physical, mental and developmental impairment. The National Standards for Out-of-Home Care, a best-practice model, was established to identify developmental and psychological impairment in children and young people in out-of-home care in a timely manner to ensure that healthcare providers can implement targeted interventions accordingly. To evaluate the effectiveness of the National Standards, the Pathway to Good Health program was introduced to some regions in Victoria.
This study will establish the timeliness and the extent of healthcare service use in children, aged up to 13 years, who received out-of-home care in Victoria for at least three months between 01 April 2010 and 31 December 2015. This study will also examine the effectiveness of the National Standards and the Pathway to Good Health program.
To meet these study objectives, the Victorian Data Linkage Unit will prepare a cohort dataset by linking records from the Victorian Child Protection Client Record Information System (children and young people meeting the inclusion criteria will be drawn from this data source) to records from several Victorian administrative datasets.
The AIHW will link the study cohort to the Medicare Benefits Schedule to identify healthcare services utilised.
Study findings will inform policies and guidelines designed to meet the healthcare needs of children and young people in out-of-home care. Healthcare providers will use study findings to identify children and young people in out-of-home care, who are at the most risk of adverse health outcomes, and to ensure that these healthcare needs are met.
Medically Assisted Reproduction: The role of IVF, ovulation induction and subfertility on reproductive and infant outcomes (EO2017/5/420)
Applicant: University of New South Wales
Approval valid until: 31 December 2021
In Australia, healthcare professionals have used a number of Assisted Reproductive Technologies (ART), such as in-vitro fertilisation (IVF) and various ovulation-induction medications to facilitate pregnancies in many women incapable of natural conception.
In recent years, there has been an influx of novel types and applications of ART, such as intracytoplasmic sperm injection, extended embryo culture and rapid embryo freezing. Furthermore, there has been an increase in utilisation rates of these novel ART applications. Despite these increased utilisation rates, there is still no evidence-basis for the effectiveness of these applications and the impacts (if any) on infant’s and children’s health outcomes.
This study examines the impact of different fertility treatments on reproductive outcomes and infant’s and children’s health outcomes. In particular, this study investigates whether novel types and applications of ART are related to any adverse health outcomes in infants and children.
The NSW Centre for Record Linkage will prepare a study cohort (approximately 600,000 women who gave birth in NSW and ACT from 01 January 2009 to the present) by linking data from several NSW health administrative datasets. The AIHW will link the study cohort to the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme.
Study findings will inform a much-needed evidence-base for the effectiveness of novel types and applications of ART and other fertility treatments. Healthcare providers will use this evidence-base to guide and inform best-practice, fertility treatment decisions.
Bilateral Agreements on Coordinated Care—Data Linkage Phase 1 (EO2017-5-421)
Applicant: Department of Health
Approval valid until: 31 December 2020
The Bilateral Agreements on Coordinated Care (the Bilateral Agreements) between the Commonwealth and jurisdictions are part of a national approach to improving health care coordination in Australia to fulfil expectations set by the Council of Australian Governments. The Bilateral Agreements include a broad range of coordinated care activities and projects that will be undertaken by the Commonwealth, states and territories. The Commonwealth’s key contribution to the Bilateral Agreements is the Health Care Home (HCH) model in primary care initiative.
The HCH trial is a common activity across all states and the Northern Territory. Two hundred general practices (GP) and Aboriginal Community Controlled Health Services (ACCHS) in ten Primary Health Networks (PHNs) in all states and the Northern Territory have agreed to recruit patients for the HCH trial. A linked dataset (the Bilaterals dataset) will be established to evaluate the HCH initiative involving the following datasets:
- State and Territory Admitted Patient National Minimum Datasets
- State and Territory Emergency Department National Minimum Datasets
- State and Territory Outpatient Services Data
- Medicare Benefits Schedule
- Pharmaceutical Benefits Scheme
- National Aged Care Data Clearinghouse
- National Death Index.
The dataset will include patients in the HCH trial as well a comparator sample of people from the trial areas but who were not in the trial.
The evaluation is being undertaken by the Commonwealth Department of Health. Consultants from Health Policy Analysis are leading the evaluation that also involves researchers from the University of NSW’s Centre for Big Data Research in Health, and the University of Technology’s Centre for Health Economics Research and Evaluation.
The key questions posed for the HCH evaluation are:
- How was the HCH model implemented and what were the barriers and enablers?
- How does the HCH model change the way practices approach chronic disease management?
- Do patients enrolled in HCH experience better quality care?
- What are the financial effects of the HCH model on governments, providers and individuals?
Study findings will inform a national evidence-base for the coordinated provision of healthcare services to patients with chronic and complex conditions in Australia. Furthermore, findings will inform health policies designed to facilitate the accessibility and availability of healthcare services within each of the jurisdictions.