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Projects approved by the AIHW Ethics Committee during 2015

Quantifying the Burden of Systemic Sclerosis in Australia; From Data Linkages to Patient-Reported Outcomes.  (EO 2013/4/38) 

Applicant: St Vincent's Hospital Melbourne
Approval valid until 1 July 2016

Australia has one of the highest prevalence rates of Systemic Sclerosis (SSc) worldwide.  SSc is arguably the most devastating of the rheumatological diseases, with a potential to irreparably damage multiple organ systems and shorten life expectancy by an average of two decades.  Data linkage will be undertaken between the Australian Scleroderma Cohort Study, the Australian Cancer Database and the Medicare Benefits System to analyse the use of health services.  This research will inform allocation of resources, with the ultimate goal of improving patient outcomes and reducing the financial and human costs of this complex chronic disease.

Formation of a study roll for military and veteran research.  (EO 2014/4/139) 

Applicant: Department of Veterans Affairs
Approval valid until 31 December 2021

The purpose of this project is to generate a database (Study Roll) of contact and demographic information for potential serving and ex-serving participants in specific health research projects undertaken by the Department of Defence and Department of Veterans' Affairs.  In particular, the Study Roll is intended to facilitate recruitment of participants, avoid duplication of data collection and reduce risk of survey fatigue, for two major research programmes commencing in 2015.  The Roll will be kept by the AIHW, which will ensure the confidentiality of research participants is maintained.

Estimation of incidence of suicide in Australian Defence Force Personnel.  (EO 2014/4/144) 

Applicant: Australian Institute of Health and Welfare
Approval valid until 31 December 2022

There has been ongoing community concern around the issue of suicide within the veteran community and, in particular, of veterans of more recent conflicts.   However, there is a paucity of statistical evidence on suicide in the Australian veteran community.

The Department of Veterans Affairs (DVA) is generally only made aware of a veteran's suicide where a dependant lodges a claim after the death of a veteran.   The Department of Defence (Defence) keep only active records of current employees and is only aware of a death (including suicide) where the member is a current employee.  This leaves a large group of veterans about whom neither DVA nor Defence have any data.

The research involves linking ComSuper data to the National Death Index to obtain data and all causes of death to estimate the number and prevalence of suicide among the recorded deceased ADF personnel since 1990.  This research will provide a better understanding of the prevalence of suicide in the wider veteran community.

Improving the detection of disadvantaged Australians at high risk of heart disease and stroke.  (EO 2015/1/142) 

Applicant: Baker IDI Heart and Diabetes Institute
Approval valid until 31 December 2023

Risk prediction tools are commonly used to detect individuals at high risk of heart disease and stroke who may benefit from preventive treatment.  However, current risk tools in Australia do not take into account the independent risk associated with a lower social  economic status, resulting in reduced prioritisation of preventive treatment among individuals who need it most.  This study proposes to use pooled Australian cohort data to develop an Australian risk prediction tool for identifying individuals at high risk of developing heart disease and stroke, which will include a measure of social deprivation.  Improved assessment and intervention for disadvantaged Australians may reduce unnecessary cardiovascular events and premature deaths as a result of unfair and ineffective risk estimation, and thereby reduce disparities in cardiovascular disease within Australia.

This study does not involve further data linkage, but requires access to de-identified data already linked for the Australian and New Zealand Diabetes and Cancer Cohort (EC 2011/2/15).

A multi-centre retrospective observational study to evaluate whether acute hyperglycaemia during critical illness identifies survivors at risk of subsequently developing type 2 diabetes.  (EO 2015/1/146)

Applicant: Royal Adelaide Hospital
Approval valid until 8 March 2022

Approximately 50% of patients without a history of diabetes develop increased blood glucose concentrations when they are critically unwell in an intensive care unit (ICU). It is thought that this hyperglycaemia resolves completely as their condition improves. The researchers suspect that this episode of high blood glucose may identify a population that is at an increased risk of subsequently developing type 2 diabetes.

The aim of this project is to collate patient and hospital data (including blood glucose levels) from the four major public ICUs in South Australia for all patients admitted between 2004-2011 (~20,000 patients).  Linkage of this data with the National Diabetes Service Scheme and National Death Index databases will be undertaken, which  will allow the researchers to describe the incidence of subsequent diabetes in those patients with and without high blood sugar levels during their critical illness.  If the results indicate that patients with high blood glucose levels more frequently develop diabetes after ICU then screening this group and/or consider targeted diabetes prevention programs will be suggested.

Treatment challenges in diabetes: A study of over one million people with diabetes.  (EO 2015/1/148)

Applicant: Baker IDI Heart and Diabetes Institute
Approval valid until 26 January 2025

The purpose of this study is to create a dataset of over a million people with diabetes with information on multiple outcomes (Alzheimer’s disease (AD) and end-stage kidney disease (ESKD), and mortality) that will be able to address the following aims:

  1. To examine the relationship between diabetes, diabetes medication and important outcomes, such as ESKD and AD
  2. To investigate inequalities in numbers and types of drugs for diabetes across socio-economic strata (defined by Accessibility/Remoteness Index of Australia (ARIA) and Socio-Economic Indexes for Areas (SEIFA).
  3. To explore the relationship between the uptake of diabetes education at a regional level (statistical local area) and the prescription of novel therapeutic agents in the treatment of Type 2 diabetes.

Data linkage between the National Diabetes Service Scheme (NDSS) to the Pharmaceutical Benefits Scheme database (PBS), the Repatriation Pharmaceutical Benefits Scheme database (RPBS), the National Death Index (NDI), and the ANZDATA (Australia and New Zealand Dialysis and Transplant Registry) will be undertaken.

Assessing guideline compliance of referral for, and uptake of, diabetic retinopathy screening.  (EO 2015/1/150)

Applicant: Melbourne University
Approval valid until 31 December 2022

People with diabetes are at risk of developing ocular complications which could lead to vision loss and blindness. About 75% of persons will have diabetic eye disease after 20 years. In order to avoid vision loss every person with diabetes should be screened regularly for ocular complications. Diabetic retinopathy (DR) screening is readily available in Australia, however severe vision loss due to complications can only be avoided if it is utilised. A recent pilot study conducted in Melbourne suggests that compliance for the National Health and Medical Research Council DR screening guidelines is very low. For example, NHMRC guidelines advise immediate referral for an eye screening upon diagnosis of diabetes type 2. However, the study found that the mean delay between diagnosis and first referral is three years and it is suspected that low compliance extends to the wider population.

Data linkage between the Medicare Benefit Scheme (MBS) and Pharmaceutical Benefit Scheme (PBS) will be undertaken to investigate referral practices, specifically the time delay between patients with a diagnosis for diabetes and subsequent consultation with an eye-care specialist.

Incidence and Survival after Acute Myocardial Infarction, Northern Territory 1992 to 2014.  (EO 2015/1/153)

Applicant: Northern Territory Department of Health
Approval valid until 31 March 2015

Information on incidence and prevalence of Acute Myocardial Infarction (AMI) will improve understanding of the health status of NT Indigenous and non-Indigenous people and fills a much needed information gap in Cardiac service delivery and planning. This information will inform resource allocation and program evaluation, and support improved service delivery by providing:

  • An understanding of the current trend of incidence and survival for AMI patients;
  • An understanding og the demographic and health characteristics affecting survival after AMI
  • Information to health professionals and policy makers for planning services for ischaemic heart disease.

The study will investigate the mortality, incidence and survival associated with AMI for people in the Northern Territory (NT) in the period 1992-2014. This includes constructing a study cohort from Hospital separations and deaths data from the local registry of births, deaths and marriages (BDM), and Coroner's data; the cohort will have the scope of all NT residents who have had an AMI (identified by hospital diagnosis or cause of death). Further data linkage of this cohort to the National Death Index will be undertaken to identify AMI patients who have died interstate and confirm local data.

From the linked data-set of all AMI patients and related deaths, the AMI incidence rates (including time trends) for the NT population and survival rates for NT AMI patients will be calculated.

Effects of opioid substitution therapy on health service use of people with opioid use  (EO 2015/1/154)

Applicant: National Drug and Alcohol Research Centre (NDARK)
Approval valid until 28 February 2025

The purpose of this project is to assess reasons for, and trends in, emergency department attendance and hospitalisation among people with opioid use disorders, and determine the impacts of opioid substitution therapy (e.g. methadone maintenance treatment) on  these.

It is a retrospective, longitudinal data linkage study, using data from NSW opioid treatment, emergency department and hospital databases, and the National Death Index.  As well as identifying the base cohort of people with opioid use disorders, the study will involve analysis of two matched comparison cohorts: one of people without opioid use disorders attending emergency departments (ED comparison cohort), and one of people without opioid use disorders who are hospitalised (hospital comparison cohort).

The aims of the project are to compare health service use of people with and without opioid use disorders; and to measure the impact of opioid substitution therapy on health service use, and associated costs of people with these disorders.
In order to determine mortality and calculate time at risk for hospitalisation, data linkage will be undertaken to link the three study cohorts with the National Death Index to obtain date and all causes of death, and year and state/territory of death registration. 

This project will contribute to an understanding of emergency department attendance and hospitalisation of people with opioid use disorders, and the potential impacts of opioid substitution therapy in reducing emergency department attendance and hospitalisation of this population. Findings will assist the estimation of costs associated with opioid use disorders, and development of a cost savings model of opioid substitution therapy.

Transition and Wellbeing Research Programme: Impact of Combat  (EO 2015/1/161)

Applicant: University of Adelaide
Approval valid until 31 March 2032

The Impact of Combat Study is a follow-up study, which will enable comparison of health outcomes for a group already tested under the Military Health Outcomes Program (MilHOP) and serve as a time point in the longitudinal surveillance of the Middle East Area of Operations (MEAO) Prospective Study cohort. The MEAO Prospective Study was a Defence commissioned research project investigating the health of ADF members deployed to the MEAO between 2010 and 2012. The Impact of Combat Study aims to examine the longitudinal trajectory of, and risk and protective factors for, mental physical, and social health and wellbeing in this cohort.

In order to recruit participants, the researchers are requesting access to the contact details of the cohort from the Study Roll for Military and Veteran Research following the processes approved by the Ethics Committee for the roll (EO2014/4/149). Details will be provided for all those identified as (a) having participated in any aspect of the Middle East Area of Operations (MEAO) Prospective Health Study, (b) having previously provided consent to be contacted for future research, and (c) still living (ascertained from linkage with the National Death Index). Initial contact with participants will be made via an introductory email from the Centre for Traumatic Stress Studies (CTSS) with links to the invitation package, contained on a secure website.  Demographic data will also be provided for consenting participants to facilitate the study and for further analysis.

All eligible participants who completed a pre-deployment survey as part of the MEAO Prospective Study will be invited to complete a survey and participate in a structured diagnostic interview as part of the current investigation. Participants who were previously identified as having engaged in high-risk roles, and who underwent neurocognitive and/or biological testing as part of the MEAO Prospective Study, will also be invited to do so again. A further subgroup identified as having probable mild traumatic brain injury will in addition be targeted to undergo MRI testing.

This study has several benefits. Firstly, results will form the basis on an ongoing longitudinal study to identify trends in client needs and predictors of these trends. Secondly, the project will identify psychosocial factors that should be considered in treatment, as well as investigating barriers and pathways to care. Thirdly, the project will identify physical, mental health and cognitive factors that should be considered in treatment, as well as investigating barriers and pathways in a high-risk group. By understanding the impact of military service, deployment experience and the associated health outcomes of ex-service and currently serving ADF members, health providers will be able to better meet the needs of contemporary veterans.

Transition and Wellbeing Research Programme: Mental Health and Wellbeing Transition Study  (EO 2015/1/162)

Applicant: University of Adelaide
Approval valid until 31 March 2032

The Mental Health and Wellbeing Transition Study will provide a comprehensive picture of the mental health and wellbeing status of contemporary veterans as well as particular subgroups within the Australian Defence Force (ADF). Additionally it will examine the trajectory of disorder and pathways to care for individuals previously diagnosed with a mental health disorder as part of the 2010 ADF Mental Health Prevalence and Wellbeing study (MHPWS). The 2010 ADF MHPWS was a Defence commissioned investigation of the prevalence of mental disorder among the entire ADF. To achieve the aims of the Mental Health and Wellbeing Transition Study, five overlapping cohorts will be targeted for survey data collection. These are:

  • All ADF members who have transitioned from regular ADF since 2010.
  • Ab initio Reservists cohort: A representative sample of 2015 Ab initio ADF Reservists (those reservists who have only ever been reservists within the ADF).
  • A representative sample of currently serving regular ADF members who are serving in 2015.
  • Approximately 25,000 regular ADF personnel who participated in previous related studies.
  • MHPWS CIDI cohort: All eligible MHPWS personnel who were interviewed using the CIDI in 2010 (originally 2,685).

To recruit participants, the researchers are requesting access to the contact details of the cohort from the Study Roll for Military and Veteran Research following the processes approved by the Ethics Committee for the roll (EO2014/4/149). Details will be provided for all those identified as (a) a member of one of the above five cohorts; (b) either not having participated in previous research, or else having participated previously and provided consent to be contacted for future research; and (c) still living (after linkage with the National Death Index). Initial contact with participants will be made via an introductory email from the Centre for Traumatic Stress Studies (CTSS) with links to the invitation package, contained on a secure website. CTSS also requests demographic data for consenters to facilitate the study and for further analysis.

The study aims to analyse the physical health status of current and ex-service ADF personnel, to determine the prevalence of mental health disorders among transitioning ADF members, to assess pathways to care for these groups and to examine the factors that contribute to the current wellbeing of currently-serving and ex-serving ADF personnel. 

The study involves a questionnaire, interview and, for a sub group of participants, neurocognitive tests.

A critical period in optimising the health of ex-ADF personnel is in the first two years following discharge from service due to the need to re-establish/connect with helpful providers in the civilian sector. Unfortunately, the civilian sector often has little understanding of the relevance or nature of ADF service, leaving ex-serving ADF personnel in a vulnerable position. It is hoped that this study will create community awareness among health professionals about the particular group and the importance of identifying those who have previously worked in the military. By understanding the impact of military service deployment experience and the associated health outcomes of ex-service and currently serving ADF members, health providers will be able to better meet the needs of contemporary veterans.

Seeding Success: Identifying factors that contribute to positive early childhood health and development in Aboriginal children (EO 2015/2/141)

Applicant: University of New South Wales
Approval valid until: 22 May 2019

Past studies have found that early, adverse experiences predict poor, developmental outcomes among Indigenous and non-Indigenous Australian children.

This study attempts to:

  • Identify which perinatal, social and early childhood health factors predict developmental outcomes, from birth to school age, for Indigenous and non- Indigenous children.
  • Determine whether Indigenous and non-Indigenous children differ in the extent to which these variables predict developmental outcomes.
  • Assess the effectiveness of two early childhood programs in promoting optimum early developmental outcomes for Indigenous children.

A study cohort will be drawn from the Seeding Success cohort-a large, linked dataset that contains data from multiple sources including: Australian Early Development Census; NSW Perinatal Data Collection; NSW Emergency Department Data Collection; NSW Register of Congenital Conditions; NSW Mental Health Ambulatory Data Collection.

The study cohort will be linked with the National Death Index (NDI), Medicare Benefits Schedule (MBS), and Centrelink Income Assistance Data for Family Tax Benefit A (FTBA).

Findings will inform health initiatives to maximise developmental trajectories for Indigenous and non-Indigenous children.

Mortality after first-ever seizure (EO 2015/2/152)

Applicant: Royal Perth Hospital
Approval valid until: 30 December 2016

Studies have investigated mortality rates among epilepsy patients (those with histories of two or more seizures). Mortality rates of patients with a first-ever seizure (those with a history of a single seizure), however, have been under-investigated.

This study aims to identify mortality rates of patients with first-ever seizures, and compare these to the general population.

It will draw a cohort from the Royal Perth Hospital (RPH) First Seizure database, a collection comprising approximately 1,500 patients who attended the RPH First Seizure Clinic since 2000.

To enable comparison of mortality rates between individuals with a first-ever seizure and the general population, a control group will be randomly selected from the electoral roll, and birth records, in Western Australia.

Both cohorts will be linked with the National Death Index (NDI).

Health practitioners can use study findings to better meet the needs of first-ever seizure patients.

The better cardiac care data linkage project (EO 2015/2/155)

Applicant: NSW Ministry of Health
Approval valid until: 20 July 2016

The Better Cardiac Care project, a national health initiative, designed to improve the cardiac health of Indigenous Australians, was developed in response to disparities in cardiac care between Indigenous and non-Indigenous individuals.

Key priorities include: early cardiovascular risk assessment and management; timely diagnosis of heart disease and heart failure; guideline-based therapy for acute coronary syndrome.

This study will address these priorities by linking data with ACT and NSW emergency department data, National Death Index (NDI) and Medicare Benefits Schedule (MBS).

Findings will contribute to the improvement of the delivery of health services, equity of access, and the care and management of Indigenous and non-Indigenous patients with cardiovascular conditions.

Relationship of external cause of death of residents in Residential Aged Care Services (nursing homes) in Australia to an individual's function performance as recorded in the Aged Care Funding Instrument (EO 2015/2/174)

Applicant: Monash University
Approval valid until: 31 March 2017

Australia's ageing population has contributed to an increasing number of premature deaths from preventable causes (e.g., injuries from falls).

This study will link data from the National Death Index (NDI) with the Aged Care Funding Instrument (ACFI), a tool that assesses the level of care required by people in aged care.

Findings will identify risk factors for premature deaths among elderly Australians.

A BOLD new model for chronic non-specific respiratory disease to enable better research, prevention, treatment and outcomes (EO 2015/2/178)

Applicant: Woolcock Institute of Medical Research
Approval valid until: 31 December 2022

Respiratory complications are a major burden of disease, and a leading cause of mortality.

This study is a longitudinal investigation of 541 adults, randomly selected from the electoral roll, whose lung functioning and risk of developing lung disease was assessed.

An objective is to identify risk factors for the development of lung disease.

This study will link a cohort with the National Death Index (NDI) to identify respiratory disease-specific mortality.

Quantifying the Burden of Systemic Sclerosis in Australia: From data linkages to patient-reported outcomes (EO 2013/4/38)

Applicant: St Vincent's Hospital Melbourne
Approval: 01 July 2016

This study investigates the burden of disease associated with systemic sclerosis (SSc), a highly debilitating rheumatological disease.

Australian Scleroderma Cohort Study (ASCS) data will be linked with hospital and ambulatory care data, and the Australian Cancer Database (ACD).

Data will also be drawn from the Medicare Benefits Schedule (MBS) to establish the number and type of ambulatory health services utilised by patients in the ASCS dataset.

Data from the ASCS will also be linked, via state linkage nodes, with SA, WA and TAS Hospital and Emergency Department data.

Findings will be used to improve outcomes for SSc patients, and reduce the associated burden of disease.

15 year quality of life, survivorship and survival outcomes for prostate cancer, NSW Prostate Cancer Care and Outcomes Study (PCOS15) (EO 2015/3/171)

Applicant: Cancer Council NSW
Approval: 01 June 2020

The NSW Prostate Cancer Care and Outcomes Study (PCOS) investigated prostate cancer patients' survival experiences.

The current study-the PCOS15-is a follow-up investigation that will analyse and model prostate cancer patients' survival experiences.

The PCOS cohort will be linked with the National Death Index (NDI) to obtain mortality information for deceased patients.

Findings will identify prostate cancer patients at risk of poor outcomes (e.g., treatment side-effects and early mortality), and inform care and management policies.

Mortality and discharge destination in patients older than 80 years referred to a tertiary intensive care service (EO 2015/3/176)

Applicant: The Canberra Hospital
Approval: 01 September 2016

Australia's rapidly ageing population continues to place substantial demands on hospital resources. There has been a rise in the number of general hospital admissions and, in particular, ICU admissions for elderly patients.

Studies have investigated health outcomes of patients, aged over 80 years, and who are admitted to ICU. However, little is known about the outcomes of those patients who are declined ICU admission because they are either too well or too sick.

This study draws data from an intensive care referral database. It will be linked with the National Death Index (NDI).

Findings should improve the match between elderly patients' treatment needs and ICU resources.

Somatic comorbidities and mortality in epilepsy - A data linkage approach (EO 2015/3/177)

Applicant: Melbourne University
Approval: 30 June 2020

This project investigates risk factors, comorbidity, and premature mortality among epilepsy patients. It will identify prevalence and risk of, neoplasms, and patterns of anticonvulsant drug use.

The study cohort will consist of a community-based cohort, drawn from the Tasmanian Epilepsy Register (TER) and a hospital outpatient sample, which will be sourced from the St. Vincent's Hospital Epilepsy Clinical Database (SVHECD). 

The cohort will be linked with the National Death Index (NDI), Australian Cancer Database (ACD), and Pharmaceutical Benefits Schedule (PBS).

Findings will enable researchers to identify specific epilepsy-related factors that may contribute to premature mortality and somatic comorbidity.

Cause of death for living kidney donors and people with End Stage Kidney Disease (ESKD) in Australia and New Zealand; a data linkage study (the CELESTIAL study) (EO 2015/3/181)

Applicant: University of Sydney
Approval: 30 September 2019

This study uses a cohort drawn from the Australian and New Zealand Dialysis and Transplant (ANZDATA) Registry.

The ANZDATA Registry contains records of Australian and New Zealand patients with End Stage Kidney Disease (ESKD), who are receiving dialysis treatment or who have had a kidney transplant.

This study will examine changes in mortality rates and cause of death among ESKD patients, compared to the general population. It will also analyse the effect of different treatment modalities on mortality rates.

The ANZDATA Registry will be linked with the National Death Index (NDI). The Living Donor Kidney Registry-a kidney donor registry-will also be linked with the NDI.

Findings will pose implications for the treatment and management of ESKD.

Health outcomes and service utilisation in a cohort of people who inject drugs, sex workers and 'at risk' young people - a record linkage study (EO 2015/3/186)

Applicant: University of New South Wales
Approval: 31 December 2017

This study assesses the health outcomes and service utilisation of a population cohort (N = 55,000) of injecting drug users and sex workers.

The population cohort will be linked with National HIV and AIDS Registries, the National Death Index (NDI), Medicare Benefits Schedule (MBS), and Pharmaceutical Benefits Schedule (PBS).

Findings will guide and inform health outcomes for this particularly vulnerable population cohort.

Assessing the mental health outcomes and socioeconomic burden associated with child sexual abuse (EO 2015/3/191)

Applicant: Swinburne University
Approval: 31 December 2018

This study examines child sexual abuse survivors' developmental trajectories.

A database of child sexual abuse victims, which the Victorian Institute of Forensic Medicine (VIFM) collated between 1964 and 1994, and a control group drawn from the Australian Electoral Commission (AEC) will be linked with the Medicare Benefits Schedule (MBS), Pharmaceutical Benefits Schedule (PBS), and the National Death Index (NDI).

Findings will inform health policies, designed to assist survivors of child sexual abuse.

Mortality, disability and life expectancy of people with diabetes: A national Australian registry-based cohort study (EO 2015/3/195)

Applicant: Baker IDI Heart and Diabetes Institute
Approval: 01 August 2019

In 2011, a study was undertaken to establish cancer prevalence and mortality rates among diabetes patients, compared to the general population. This study linked the National Diabetes Service Scheme (NDSS) with both the Australian Cancer Database (ACD) and the National Death Index (NDI).

The current investigation will analyse this linked dataset to obtain mortality estimates and life expectancy among diabetes patients, compared to the general population. The study will also examine the effect of disability on life expectancy.

Health professionals can use study findings to enhance quality of life among diabetes patients.

Comparison of fact and cause of death between ANZDATA and NDI (EO 2015/3/199)

Applicant: ANZDATA Registry
Approval: 01 October 2017

The ANZDATA Registry contains records of Australian and New Zealand End Stage Kidney Disease (ESKD) patients, who are receiving dialysis treatment or who have had a kidney transplant.

As part of the CELESTIAL study, ANZDATA records were linked with the National Death Index (NDI).

The current study will use CELESTIAL study findings to compare NDI and ANZDATA cause of death codes, as the latter contains different cause of death categories.

Findings should enable health professionals to promote and maintain ESKD patients' quality of life, through a better understanding of ESKD mortality.

Linkage of the RFPCS and EOPCFS prostate cancer studies to the National Death Index (EO 2015/4/124)

Applicant: Cancer Council Victoria
Approval: 01 January 2026

This study aims to identify modifiable risk factors for prostate cancer, such as cigarette smoking, body mass index, and diet.

Epidemiological data will be linked with the National Death Index (NDI).

Findings will provide much needed information about risk factors for prostate cancer. Health professionals can use this information to enhance quality of life among prostate cancer patients.

Does continuity of primary care reduce demand on emergency department presentations and hospital admissions (EO 2015/4/192)

Applicant: Curtin University
Approval: 01 November 2018

This study examines the influence of primary care contact on emergency department visits.

It has the following objectives:

  • Investigate the impact of primary care contact on emergency department visits.
  • Examine the effect of primary care contact on costs related to emergency department visits and potentially preventable hospitalisations.
  • Identify socio-demographic and clinical predictors of primary care contact patterns.

A study cohort will be linked with WA Hospital and Emergency Department data, the Medicare Benefits Schedule (MBS), and the National Death Index (NDI).

Enhancing the accuracy of heart disease risk assessment in Indigenous Australians (EO 2015/4/193)

Applicant: Menzies School of Health Research
Approval: 01 July 2022

Cardiovascular disease is a leading cause of mortality among Indigenous Australians.

This study will investigate cardiovascular disease mortality rates among Indigenous Australians. A cohort of Indigenous individuals and non-Indigenous controls will be linked with the National Death Index (NDI).

Findings will improve the detection and management of cardiovascular disease among Indigenous Australians.

Cancer survivors and support persons' preferences for care: A discrete choice experiment (EO 2015/4/203)

Applicant: University of Newcastle
Approval: 31 December 2017

This study examines cancer survivors' and their support persons' preferences for various forms of care (e.g., psychosocial care, peer support, caregiver roles). Another aim is to assess the extent to which demographic characteristics (e.g., sex, age and cancer type) account for different preferences between patients and their support persons.

Findings will guide health care policy, and lead to improvements in cancer survivors' quality of life.

Optimal pain assessments in joint replacement patients (EO 2015/4/204)

Applicant: University of South Australia
Approval: 31 December 2019

This study will examine reported pain and analgesic medication use, before and after joint replacement surgery.

It will also identify patient subgroups, using analgesic medication ineffectively or inappropriately.

Findings will assist health professionals to improve the care of patients who undergo joint replacement surgery.

Utilising prescription patterns to identify increased risk of death after a diagnosis of epilepsy (EO 2015/4/205)

Applicant: University of Melbourne
Approval: 02 April 2018

This project studies risk factors for premature mortality among patients, recently diagnosed with epilepsy. Specific objectives include:

  • Establish anti-epileptic drug prescription patterns
  • Identify mortality rates and causes of death
  • Determine prevalence rates for cancer diagnoses.

A study cohort of patients with new-onset epilepsy will be linked with the Pharmaceutical Benefits Schedule (PBS), National Death Index (NDI), and the Australian Cancer Database (ACD).

Findings will assist in identifying patterns of high-risk anti-epileptic drug use, and related health complications.

The Latrobe Early Life Follow-up Anonymised Data Linkage Study: The child health and development stream of the Hazelwood Health Study (EO 2015/4/206)

Applicant: Victorian Department of Health and Human Services
Approval: 31 December 2028

The Victorian Department of Health and Human Services commissioned a study to examine Latrobe Valley residents' health outcomes, following exposure to smoke from the 2014 Hazelwood coal mine fire.

The current study aims to provide new evidence about the relative importance of the severity and timing of air pollution exposure on a range of perinatal and child health, and developmental outcomes

The Victorian Department of Health and Human Services will link a study cohort with several Victorian health data sources. AIHW will then link the data with the National Death Index (NDI) and Medicare Benefits Schedule (MBS).

Findings will inform the development of evidence-based guidelines for managing air pollution events, and minimising health risks for pregnant women, unborn babies and infants.

ACT Asbestos Health Study: Data linkage study on the risk of mesothelioma and other cancers (EO 2015/4/208)

Applicant: Australian National University
Approval: 30 June 2017

Between the late 1960s and 1979, houses in the ACT and southern NSW were insulated with loose-fill asbestos. Despite remediation, asbestos was still found in many houses, years later.

In recent years, the number of people reporting exposure to asbestos, and subsequent health complications, has risen. Despite this, little is known about the long-term health effects of living in houses containing loose-fill asbestos.

This study aims to:

  • Estimate the prevalence of mesothelioma among individuals who have lived in houses containing loose-fill asbestos.
  • Estimate the relative rates of mesothelioma in those who have resided in a house with loose-fill asbestos compared to individuals who have not, and to the general population.
  • Calculate the rates of other types of cancers associated with long-term exposure to asbestos.

Study cohort data and controls from the ACT resident population will be linked with the National Death Index (NDI) and the Australian Cancer Database (ACD).

Findings should provide much needed information about health complications arising from exposure to loose-fill asbestos.

The safety of pharmacotherapies for smoking cessation (EO 2015/4/209)

Applicant: University of New South Wales
Approval: 30 June 2019

There are a number of pharmaceutical interventions to assist individuals to cease smoking (e.g., bupropion, varenicline and nicotine replacement therapy). Some interventions have, unfortunately, been linked to adverse events such as cardiovascular disease, depression, seizures and, in severe cases, suicide.

This study examines whether the use of smoking cessation pharmaceutical interventions is associated with an elevated risk of cardiovascular disease, adverse psychiatric outcomes, and seizures.

A study cohort will be linked with the Pharmaceutical Benefits Schedule (PBS) and the Medicare Benefits Schedule (MBS).

Findings will determine whether smoking cessation pharmaceutical interventions are, in fact, linked to adverse health outcomes.

Linkage of ACT Cancer Registry to the National Death Index (EO 2015/4/210)

Applicant: ACT Health
Approval: 30 June 2017

The ACT Cancer Registry was established in 1982. It is a population-based registry of individuals, diagnosed with cancer in the ACT.

This study links the ACT Cancer Registry to the National Death Index (NDI). It will identify individuals who were diagnosed with cancer in the ACT, but who may have died interstate.

The linked dataset will be used to conduct an up-to-date cancer relative survival analysis of ACT residents, and examine survival trends over time.

The results will be important for monitoring progress towards early diagnosis, and contributing to the effective treatment and management of ACT cancer patients.

Recent changes in IVF clinical practice: Data linkage to investigate their impact on fetal growth, birth defects and cerebral palsy (EO 2015/4/211)

Applicant: Telethon Kids Institute
Approval: 31 December 2017

In Australia, the number of invitro fertilisation (IVF) births continues to increase. At the same time, new IVF practices (e.g., extended embryo culture, rapid embryo freezing) have been implemented. However, little is known about the effects of these on developmental outcomes, if any.

This study will establish whether changes in IVF practices are linked to adverse developmental outcomes.

Western Australia (WA) is the only Australian jurisdiction to have a register of individuals who have received IVF treatment. This study will link this register with the Pharmaceutical Benefits Schedule (PBS) and WA health administrative datasets.

Health professionals can use findings to enhance post-IVF developmental outcomes.

Surveillance of hospitalisations, antiviral therapy, hepatocellular carcinoma and mortality among people diagnosed with hepatitis C or hepatitis B virus infection in New South Wales: An annual population-based linkage study (EO 2015/4/212)

Applicant: The Kirby Institute (University of New South Wales)
Approval: 01 December 2020

This study attempts to establish an annual, prospective population-based program for monitoring morbidity and mortality among individuals diagnosed with hepatitis B and/or hepatitis C.

A study cohort will be linked with the National Death Index (NDI), Pharmaceutical Drugs of Addiction System (PHDAS), and the Pharmaceutical Benefits Schedule (PBS).

The study will evaluate trends and identify populations at increased risk of hepatitis-related morbidity and mortality.

Findings will inform policies designed to reduce the risk and burden of hepatitis B and/or hepatitis C.

Hazelwood Adult Survey & Health Record Linkage (EO 2015/4/214)

Applicant: Monash University
Approval: 02 December 2025

From February to March 2014, a fire took place at the Hazelwood Power Station, in Victoria. There was community concern about potential health complications, following exposure to the smoke. The Hazelwood Adult Survey and Health Linkage Study was established to investigate any links between exposure to smoke and health complications.

The objective of this linkage study is to examine short-, medium- and long-term health effects following exposure to smoke from the Hazelwood Power Station fire.

A study cohort from Morwell and the comparison community of Sale will be linked with the National Death Index (NDI) and the Australian Cancer Database (ACD).

Findings will inform the development of strategies to manage adverse health outcomes following exposure to smoke from the Hazelwood fire.

Cancer Pathways Study (EO 2015/4/219)

Applicant: Victorian Department of Health and Human Services
Approval: 01 November 2020

The Cancer Pathways Study-a collaboration between the Victorian Department of Health and Human Services and the Commonwealth Department of Health- examines clinical pathways for cancer patients.

The objectives of this study are:

  • Identify optimal cancer care pathways
  • Identify variation in treatment outcomes
  • Establish expenditure at each stage of a care pathway
  • Make clinical pathways more available and accessible

The study cohort consists of between 50,000 and 55,000 Victorian patients diagnosed with colorectal and/or breast cancer.

AIHW will link the study cohort with the Medicare Benefits Schedule (MBS) and the Pharmaceutical Benefits Schedule (PBS).

Findings will provide information about treatment and care trajectories among cancer patients. Health professionals and policymakers can use this information to improve existing care programs by maximising availability and accessibility.