• Print

Projects approved by the AIHW Ethics Committee during 2012

Long-term survival of Flinders Intensive and Critical Care Unit patients determined after matching with the National Death Index (EC 2012/1/1)

Applicant: Flinders University
Approval valid until 31 March 2017
 

Project summary  

The researchers seek to link the Flinders Medical Centre Intensive and Critical Care Unit (ICCU) database of about 25,000 patients with the National Death Index to determine fact of, date of and cause of death for all patients. This information then will be used in statistical analyses to calculate de-identified long-term patient survival rates and monitor them over time. Patient outcomes are generally only known to time of hospital discharge, and determining long-term patient survival is important in researching ICCU clinical care outcomes.

Ten Year follow-up of survival after endovascular aneurysm repair (EC 2012/1/2)

Applicant: University of Adelaide
Approval valid until 28 February 2013
 

Project summary  

Between 1999 and 2001 information pertaining to the surgical procedure endovascular repair (EVAR) of the abdominal aortic aneurysms was collected from 961 patients. This was used along with the long-term follow-up data, to produce a statistical model whereby predictions of outcome after EVAR could be made based on eight preoperative variables. The aim of the study is to update and improve the current model and to re-link the National Death Index to obtain 10-year survival and mortality outcomes for the original patient cohort.

Mortality rates in a youth offender cohort: a 10 year follow-up (EC 2012/1/3)

Applicant: Royal Children's Hospital
Approval valid until March 2013
 

Project summary  

This is an extension of a previous study; Young Offenders' Risk and Protective Factor Study; a ten-year follow-up study of a Victorian cohort of 2,489 first time youth offenders. This study, between 1988 and 1998, found a marked increase risk of premature death. The present study will extend the cohort and person-years to include youth offenders between the years 1998 and 2008, giving an estimated cohort size of about 5,000. The aim is to ascertain the mortality profile of the extended cohort over 20 years and identify those who are at greatest risk of early death. The researchers therefore seek to link the cohort with the National Death Index to obtain date and all causes of death.

Three month outcome of patients with suspected acute coronary syndrome using point of care troponin testing compared with laboratory based troponin testing: a randomised trial (EC 2012/1/4)

Applicant: St George Hospital
Approval valid until 30 October, 2012
 

Project summary  

This is a follow-up of a study examining the use of a point of care (POC) blood analyser stationed within the emergency department (ED), operated by ED staff and with results obtained in a few minutes (rather than sending blood to a central laboratory). Patients presenting to the ED with chest pain were randomised to have a critical blood test (troponin T) analysed by the POC machine or by the central laboratory. The original study aimed to determine whether patient processing times in ED could be improved with the use of a POC machine. The current study aims to test whether clinical outcomes are identical regardless of the type of test, as determining by certain events during a 3 month follow-up period: death, cardiac arrest, heart attack, revascularisation procedure (bypass operation or angioplasty/stent). This will be achieved by medical record review, phone call, and linkage with the National Death Index. The researchers seek to link to the National Death Index to obtain date of death.

Do cognitive and sensory measures predict driving outcomes and driving cessation in older drivers? A 5 year validation study (EC 2012/1/5)

Applicant: Australian National University
Approval Valid until September 2012
 

Project summary  

This study will follow-up a sample of older drivers in the ACT (aged 65 and over) who volunteered to take part in a study of Driving and Healthy Ageing in 2006. The follow-up study consists of a questionnaire mailed to participants and a brief cognitive assessment administered by telephone. The aim is to evaluate the long-term predictive validity of screening tools and other cognitive and visual measures for identifying older adults at higher risk of road accidents, and assess predictors of readiness to give up driving, to achieve safer driving behaviour on ACT roads. This will inform education programmes and the development of self-assessment tools for older drivers, and help elucidate how variables such as visual function, anxiety and health affect the relationship between cognitive ageing and hazard perception.

The researchers seek to link the study cohort of 41 with the National Death Index in order to identify who among the non-responders to the follow-up study has passed away since 2006.

Matching Melbourne Collaborative Cohort Study participants to the National Death Index to collect cause of death (COD) data for people known to be deceased but missing COD (EC 2012/1/6)

Applicant: Cancer Council Victoria
Approval valid until Ongoing
 

Project summary  

The MCCS (Health2020) is a longitudinal study established in the 1990s by Cancer Council Victoria to investigate prospectively the role of diet and lifestyle factors in common chronic diseases. Between 1990 and 1994, 41,514 Melbournians aged 40-69 were recruited into the study. The principal objective of the MCCS is to improve the prospective investigation of genetic, dietary and lifestyle factors and risk of cancer and other common diseases such as cardiovascular disease and diabetes. This is being done by selecting a study population with an increased range of dietary exposures, by increasing the accuracy of dietary measurements and by collecting blood for the analysis of dietary biomarkers and DNA polymorphisms involved in dietary and other metabolic processes. MCCS participants are followed up approximately every 3-5 years to determine their subsequent health experience and events, in particular death and cancer diagnosis, for analysis of relationships with genetic, dietary and lifestyle factors. Participants gave consent at the time for Health2020 (MCCS) to contact their doctor and to look at medical records to confirm details of any illness that they may have had or any treatment that may have been given then or in the future.

The researchers seek to link the records of those participants known to have died, but whose cause of death is unknown, (around 2,500 people) with the NDI to obtain cause of death.

Depression, health-related quality of life and mortality/morbidity in cardiac patients (EC 2012/1/7)

Applicant: University of Melbourne
Approval valid until 31 December 2013
  

Project summary  

Studies have indicated that depression in cardiovascular disease (CVD) patients predicts greater mortality and morbidity. However, there remains limited clarity as to how depression actually contributes to these negative outcomes. This project aims to contribute to current understanding of the pathways between depression, and mortality and morbidity. Specifically, it will investigate the role of physical health-related quality of life (HRQoL) as a mediator. The researchers seek to link to existing depression and HRQoL data for 192 patients from the Psychosocial CABGS (coronary bypass graft surgery) dataset to the National Death Index to obtain date and causes of death (The project also involves linking to the Victorian Admitted Episodes Dataset to obtain hospital morbidity data).

Predictors of survival from breast cancer (EC 2012/1/8)

Applicant: Royal Australian College of Surgeons
Approval valid until February 2013
 

Project summary  

The National Breast Cancer Audit (NBCA) collects information from surgeons on the treatment of their patients who were diagnosed with breast cancer. In 2008, in collaboration with the National Breast and Ovarian Cancer Centre (NBOCC), the NBCA linked with the National Death Index to gain death information on these patients and, in the following years, conducted research into factors affecting survival from breast cancer. The researchers are seeking a further linkage with the National Death Index to obtain date and all causes of death to create a more up-to-date dataset. The objective of the study is to assess survival outcomes from breast cancer by various prognostic, socio-demographic and clinical treatment characteristics recorded on the NBCA database. The results will indicate effects of differences in treatment policy on survival outcomes by prognostic marker and other determinants. This information would help determine the most ideal treatment and follow-up regimes for women diagnosed with breast cancer and ultimately reduce mortality from the disease.

Trial of sunscreen and β-carotene supplements in the prevention of actinic skin and eye disease (also known as The Nambour Skin Cancer Study) (EC 2012/1/9)

Applicant: Queensland Institute of Medical Research
Approval valid until 2016
 

Project summary  

This project involves the follow-up of participants in the Nambour Skin Cancer Study, which took place between 1992 and 1996. It aims to identify whether β-carotene supplementation and other nutritional factors are associated with cause of death, following preliminary analysis of earlier available data that suggests β-carotene supplementation may be protective for ceratin categories of cardio-vascular death. The researchers seek to link the study cohort (1,621 people) with the National Death Index to obtain date and all causes of death.

Aspirin to prevent recurrent venous thromboembolism (ASPIRE): A multi-centre, randomised, double-blind, placebo-controlled clinical trial examining the efficacy and safety of low-dose aspirin after initial anticoagulation to prevent recurrent venous thromboembolism (EC 2012/1/10)

Applicant: University of Sydney
Approval valid until 31 December 2013
  

Project summary  

Patients who develop venous thromboembolism (VTE) in the absence of a clinically identifiable cause ('unprovoked' VTE) remain at high risk of recurrence for many years. Long-term treatment with warfarin is highly effective but the benefit of prolonging warfarin beyond six months is negated by the risk of major bleeding and the inconvenience of the treatment. There are currently no proven effective and safe alternatives to warfarin to prevent recurrence. ASPIRE, a multicentre, randomised, double-blind placebo controlled clinical trial, is examining the efficacy and safety of low-dose aspirin to prevent recurrent VTE in patients with a first episode of unprovoked VTE who have completed initial treatment with heparin and warfarin. The researchers seek to link the data for the study patients to the National Death Index to obtain date and cause of death for those patients for whom it may not have been recorded.

All participants have given written informed consent to be part of the clinical trial. This includes giving permission for medical records to be accessed during the course of the study to check on health status.

Mortality in people who inject drugs in Australia: record linkage of combined research cohorts (EC 2012/1/11)

Applicant: Burnett Institute
Approval valid until April 2013
 

Project summary  

This project will bring together data from six Australian studies of people who inject drugs. All the Chief Investigators are collaborators on the recently awarded NHMRC Centre for Research Excellence in Injecting Drug Use and the integration of data across studies was a key objective of this Centre. With many comparable data fields, the combined data for over 2,000 people will provide the capacity to explore the factors associated with mortality across time in this vulnerable population and help inform prevention initiatives. The researchers are seeking to link the combined dataset to the National Death Index to obtain date and all causes of death. Data linkage will use first two letters of each of first name and surname, date of birth, sex and, where possible, last known postcode and date of death.

Australian Longitudinal Study on Women's Health (EC 2012/1/12)

Applicant: University of Queensland
Approval valid until 31 December 2016
 

Project summary  

The Australian Longitudinal Study on Women's Health (ALSWH) - widely known as Women's Health Australia - is a longitudinal population-based survey, funded by the Australian Government Department of Health and Ageing. The Project began in 1996 and examines the health of over 40,000 Australian women. The ALSWH involves three large, nationally representative cohorts of Australian women representing three generations (born 1973-78, 1946-51 and 1921-26). The Study was designed to explore factors that influence health among women who are broadly representative of the entire Australian population. Women were randomly selected from the Medicare Australia database and invited to participate in the longitudinal Study. After Survey 1 in 1996, the three age cohorts have been surveyed sequentially, one cohort per year, on a rolling basis since 1998.

The Project provides a resource to examine associations over time between aspects of women's lives and their physical and emotional health. It provides an evidence base to the Department of Health and Ageing ( DoHA) - as well as other Australian and State/Territory Departments - for the development and evaluation of policy and practice in many areas of service delivery that affect women.

DoHA has given approval for ALSWH data to be linked with Medicare (MBS and PBS). This will provide a national database of information on a nationally representative group of women who have already provided data for 15 years. The ALSWH is one of the few large, long-running studies that can link longitudinal survey data and longitudinal health service data for the same individuals. Findings will be translated into evidence that can be used for prioritising health policy and planning to reduce the disease burden in health and to improve health services to Australian women.

The AIHW role is to facilitate the matching of ALSWH data with MBS and PBS data from Medicare on an annual basis, using ALSWH IDs. There is a rigorous process for the data flows for this matching that ensures that identifiable data (names and dates of birth), Medicare PIN and survey response data are all kept separate

The ALSWH also has approval to receive annually-updated mortality data by linkage with the National Death Index.

Single-blinded randomised controlled trial comparing the effect of care navigation versus current standard care in patients presenting to the Emergency Department with serious chronic illness, on the rate of re-presentation to the Emergency Department, re-admission to hospital and time spent in hospital (Care Navigation Trial) (EC 2012/1/13)

Applicant: University of Sydney
Approval valid until August 2014
 

Project summary  

Inappropriately managed chronic illness results in exacerbations of health conditions, which lead to avoidable presentations to hospital emergency departments. Nepean Hospital is implementing 'Care Navigation', which is a new strategy tailored to link individual chronically ill patients presenting to the ED with community health services aimed at providing at-home chronic illness care and education. This study is a randomised clinical trial to test the difference in effectiveness to chronically ill patients over a two-year follow-up period between two strategies; comparing the current, symptom-led patient flow from emergency departments with Care Navigation.

The researchers are seeking to link the study cohort of 500 patients with the National Death Index to obtain fact of death at two points in the study: (a) prior to data collection at the commencement of the first year of follow-up to avoid contacting deceased study participants, and (b) at the end of the study period to ascertain mortality as an outcome.

Linkage of the National Diabetes Services Scheme dataset to the Pharmaceutical Benefits Scheme dataset to derive insulin status (EC 2012/1/15)

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

Project summary  

This project is aimed at improving data quality in the NDSS dataset and subsequently the National Diabetes Register (NDR, which is derived from the NDSS data set) by data linkage to the Pharmaceutical Benefits Scheme (PBS) dataset held by Medicare Australia. Currently there are numerous uncertainties about the insulin use status of registrants on the NDSS dataset, due to ongoing data problems surrounding syringe purchases, limitation in the scope of the NDSS dataset, and complications resulting from the introduction of the medicine Byetta into the NDSS

The NDR, which is designed to monitor the incidence of insulin-treated diabetes in Australia and to provide a resource for epidemiological and clinical studies, requires accurate information on the insulin use status of registrants in the NDSS. Historically the quality of the insulin use status information in the NDSS has been lacking and the NDR has been compromised in its ability to accurately report on cases of insulin-treated diabetes. Linking the NDSS to the PBS will enable information on the number of insulin scripts to be added to the NDR. This in turn will enable (a) validation of the insulin status flag on the NDSS dataset, (b) derivation of a measure of insulin use each year for each registrant in order to monitor the prevalence of insulin-treated diabetes over time, and (c) estimation of the ascertainment rate of the NDSS dataset for insulin-treated diabetes.

The data linkage will be undertaken by the AIHW Data Linkage Unit as part of the regular process of constructing the NDR from the NDSS (obtained from Diabetes Australia every 6 months). The DLU already undertakes a number of steps in this process including linking the NDSS to the National Death Index (EC 2011-4-35).

Linkage of the National Diabetes Services Scheme (NDSS) data to the Pharmaceutical Benefits Scheme (PBS) data for the Diabetes medicines use and self-care report (EC 2012/1/16)

Applicant: Australian Institute of Health and Welfare
Approval valid until 30 June 2014
  

Project summary  

This projects aims to analyse the use of cardiovascular disease medications, eye disease medications and chronic kidney disease medications by people with diabetes and give a measure of the number of people with diabetes who are using these medications to prevent or treat these associated diseases. It will also explore how self-care products and medications are purchased for the management of both Type 1 and Type 2 diabetes in Australia.

To control glucose levels, people with diabetes need to themselves carry out actions such as life style changes and monitor blood glucose levels, and often need to take prescribed medications including tablets or insulin. If blood glucose levels are left poorly controlled, diabetes can lead to a range of complications including the three above diseases.

The project involves linkage t of the NDSS (held by Diabetes Australia) to the PBS data (held by Medicare). The linked data set will enable analysis by type of diabetes, of the purchasing rates of medications for complications of diabetes. It will also enable the total amount of blood glucose monitoring strips purchased in Australia to be calculated, as these can be purchased through both the NDSS and the PBS programs.

The analysis will be carried out by the AIHW Cardiovascular, Diabetes and Kidney Unit, after receiving the de-identified linked file from the Data Linkage Unit. Thus the identifiable data for linkage will be kept separate from the clinical data for analysis and handled by different units.

Linkage of the National Diabetes Register to the Pharmaceutical Benefits Scheme dataset to update Indigenous status (EC 2012/1/17)

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

Project summary  

This project is part of ongoing work by the AIHW to improve the quality of data held on the National Diabetes Register (NDR). As part of the National Indigenous Reform Agreement on Closing the Data Gap, the Council of Australian Governments has tasked the AIHW with auditing data quality and leading the analysis of Indigenous identification in key datasets, with a baseline report and ongoing five yearly studies to monitor improvement over time. One of the datasets identified for improvement is the NDR, which is a register of individuals who use insulin to treat their diabetes. The quality and integrity of Indigenous health statistics is of critical importance to the evidence base for monitoring progress towards the COAG Closing the Gap targets.

The NDR will be linked to the Pharmaceutical Benefits Scheme (PBS) data (held by Medicare Australia) to obtain Indigenous status from the PBS (known as the Voluntary Indigenous Identifier), to verify the Indigenous status information held on the NDR and to fill information gaps. The aim is to benchmark the current state of reporting of Indigenous status and to improve the quality of Indigenous status information held on the NDR with a view to more complete reporting in future. It is planned to seek approval to repeat the linkage periodically (approximately every 5 years).

The Data Linkage Unit (DLU) will receive the NDR identifying information (but no clinical information) in order to link the NDR to the PBS (Voluntary Indigenous Identifier), and then create a new field to be added to the NDR that will flag if a registrant is Indigenous according to the PBS.

Epworth Hospital Cardiac Surgery Database (EC 2012/2/20)

Applicant: University of Melbourne
Approval valid until 30 September 2019
 

Project summary  

The Epworth Hospital Cardiac Surgery database currently consists of data on over 35,000 operations and has routinely been linked to the NDI since 1999. The researchers are seeking to link 19,948 patients from Epworth Hospital Cardiac Surgery database with the NDI to determine fact, date and all causes of death. This information will be used to conduct a 15 year survival data analysis as a means for assessing the impact of conduit (artery and vein) selection in cardiac surgery on long-term patient survival. The resulting information will be a guiding factor in the future of clinical practice in coronary surgery.

Rates of psychosis in high risk population (EC 2012/2/21)

Applicant: Orygen Youth Research Centre
Approval valid until 30 June 2014
 

Project summary  

The researchers seek linkage with the National Death Index for 226 individuals who have been identified, through previous research studies at the PACE clinic, as at high risk of developing a psychotic disorder. The researchers wish to determine fact, date and cause of death. This information is to be used as part of their long term (>6 years) follow-up of previous study participants classified as 'Ultra High Risk' who have died.

The utilisation of medications during pregnancy and the associated health outcomes (EC 2012/2/22)

Applicant: University of Western Sydney
Approval valid until 16 April 2015
 

Project summary  

This study aims to measure the extent to which medications are used prior to and during pregnancy, and the associated health outcomes for mother and child. It will also examine the extent to which utilisation has changed in response to policy reforms, and whether differences in utilisation exist between different population groups. Findings regarding the safety and utilisation of medications will be important for informing policy and guidelines on their prescription during pregnancy.

The study includes all women who gave birth in NSW and Western Australia in the period 2003 to 2010, later to be updated to include 2011-14 data. The Centre for Health Record Linkage in NSW and WA Data Linkage Branch will undertake the linkage of state-based perinatal, hospital, emergency department, death and birth defect records for their respective states. The AIHW will then undertake the linkage of Pharmaceutical Benefits Scheme data from Medicare to provide the medication information.

Long term angiographic results and clinical outcome of radial artery grafts (EC 2012/2/23)

Applicant: University of Melbourne
Approval valid until 31 May 2016
 

Project summary  

This study aims to examine the differences in outcomes for coronary artery bypass surgery (CABG) between different types of grafts from other parts of the body and the survival and clinical wellness of participants receiving CABG after 10 years. The researchers seek to link a cohort of patients who have undergone CABG between 1995 and 2002 at the Royal Melbourne and Melbourne Private Hospitals, to the NDI to obtain date and cause of death. This will be used to help ensure that follow-up letters are not sent to deceased patients and to analyse outcomes for CABG patients.

Australian Orthopaedic Association National Joint Replacement Registry (AOANJRR) (EC 2012/2/24)

Applicant: Australian Orthopaedic Association
Approval valid until 30 September 2019
 

Project summary  

The AOA National Joint Replacement Registry collects data on all joint replacement surgery in Australia. The analysis of the data provides valuable information on the outcome of joint replacements. The application seeks linkage to the NDI in order to identify those patients who have died and to obtain date of death and cause of death. This information is necessary to analyse survivorship of joint replacement procedures and mortality post-procedure. The Registry has been linked to the NDI annually since its establishment in 1999 (approved as EC 297). This application is for further ongoing linkage, anticipated to be undertaken twice a year.

Australian Treatment Outcome Study (ATOS) (EC 2012/2/25)

Applicant: University of New South Wales
Approval valid until 31 December 2013
 

Project summary  

The ATOS is a prospective study of treatment outcomes for heroin dependence. Heroin users were recruited on entry to treatment in 2001 and 2002 and then regularly followed up for three years. Eleven year follow-ups are currently underway. The researchers are seeking to link the study cohort with the NDI to obtain fact, date and cause of death.

Fact of death is requested in order to avoid attempting to contact participants who are deceased. The causes of death are requested in order to analyse the impact that treatment exposure has on mortality. It is known that heroin users have much higher rates of mortality, particularly as a result of suicide.

Long term follow-up of specialist based metropolitan cohort of IBD patients (EC 2012/2/26)

Applicant: Concord Repatriation General Hospital
Approval valid until 31 January 2014
 

Project summary  

The aim of the research is to describe the epidemiology of inflammatory bowel disease to determine the mortality and morbidity associated with it and to test a number of specific hypotheses. The researchers are seeking to link the patient cohort with the NDI to obtain fact, date and causes of death, and year and state of death registration.

Measuring the impact of the National HPV Vaccination Program through data linkage: screening participation and vaccine effectiveness in young Victorian women (EC 2012/2/27)

Applicant: Victorian Cervical Cytology Registry
Approval valid until 28 June 2013
 

Project summary  

In 2007, the Australian Government funded the Human Papillomavirus (HPV) vaccine through its National Immunisation Program. This project will be the first to evaluate the effectiveness of the vaccine by comparing the difference in incidence of cervical abnormalities by vaccination status and will also determine the screening patterns of vaccinated women. It involves the linkage of the Victorian Cervical Cytology Registry (VCCR) and the National HPV Vaccination Program (NHVPR) for Victorian women. The primary aims are to compare participation in cervical screening and to compare the incidence of cervical abnormalities between vaccinated and unvaccinated women.

Household, Income and Labour Dynamics in Australia Survey (HILDA) (EC 2012/2/28)

Applicant: University of Melbourne
Approval valid until 30 September 2019
 

Project summary  

The HILDA (Household, Income and Labour Dynamics in Australia) Survey has been conducted on an annual basis for 11 years, funded by the Australian Government. The purpose of this proposal is to match the HILDA sample contact database to the NDI to identify deaths. This will ensure accurate measurement of sample outcomes and will improve the quality of data both by identifying non-respondents who have died (which will assist in the construction of response rates and population weights), and through the provision of mortality data (fact of death, date of death and cause of death). In conjunction with the life course data provided by the HILDA survey, this will also facilitate research investigating health and socio-economic determinants of mortality.

RESoURCES Program. Verification of Family Histories (EC 2012/2/29)

Applicant: Cancer Council Victoria
Approval valid until 31 December 2016
 

Project summary  

Researchers from Cancer Council Victoria are undertaking four separate case-control studies of less commonly understood cancers using a common cohort dataset. This is referred to collectively as the RESoURCES (Rare and Emerging Subtypes of Under-researched Cancers Epidemiology Study) Program.

The researchers seek a single linkage of this common dataset with the National Death Index and the Australian Cancer Database to verify cancer diagnosis and vital status to be used in all four component studies. A single linkage of the common dataset is sought to reduce duplication of effort and to expedite the linkage process.

Rwanda Deployment Health Study (EC 2012/2/30)

Applicant: University of Queensland
Approval valid until 30 June 2013
 

Project summary  

The Rwanda Deployment Health Study (RDHS) is a retrospective longitudinal census of the health and compensation outcomes of all veterans of the Australian Defence Force deployment to Rwanda (Operation Tamar). The study aims to link data from medical and personnel records with compensation and healthcare utilisation datasets with the National Death Index, from the date of the first Rwanda deployment to the end of 2011, with the aim of understanding the longitudinal trajectory of health and compensation outcomes for ADF peacekeeping veterans and veterans in general. Linkage will be undertaken to obtain date and causes of death and the year of death registration.

Analysis of difference in bowel cancer outcomes between NBCSP participants and non-NBCSP participants in Australia (EC 2012/2/31)

Applicant: Australian Institute of Health and Welfare
Approval valid until 30 June 2016
 

Project summary  

Data showing bowel cancer outcomes for those screened by the National Bowel Cancer Screening Program (NBCSP) are limited. This project aims to investigate and report on differences in outcomes between participants of the NBCSP and people in the NBCSP target ages who did not participate. Measures such as bowel cancer incidence, mortality and cancer stage (where possible) will be reported, along with additional information on the performance of the screening kit (that is, its predictive value). Linkage of NBCSP data to the Australian Cancer Database (ACD) and National Death Index (NDI) will be required to achieve this at the national level

Cardiac surgery in Indigenous Australians - How Wide is "the gap" (EC 2012/3/38)

Applicant: The Prince Charles Hospital, Townsville
Approval valid until 31 December 2013
  

Project summary  

The aim of the research is to assess whether there are any differences between the outcomes of Indigenous and non-Indigenous patient cohorts who undergo cardiac surgery at Townsville Hospital. The researcher is seeking to link details of all patients who underwent cardiac surgery at Townsville Hospital between August 2008 and April 2010 with the National Death Index to obtain fact of death, date of death, and all causes of death.

Health status and economic outcomes of critically ill trauma patients (HECTIC) (EC 2012/3/39)

Applicant: Princess Alexandra Hospital, Brisbane
Approval valid until 31 March 2013
 

Project summary  

The researchers are seeking to link approximately 40 study participants classified as lost to follow-up with the National Death Index to obtain fact, date and all causes of death. The data are requested as part of the initial descriptive component of the research which will examine the trajectory of critically injured adults in terms of health and economic outcomes during the 24 month period following their discharge from hospital.

Mortality and mental health in Darling Downs and Southwest Queensland (EC 2012/3/40)

Applicant: Queensland Health
Approval valid until 31 December 2013
 

Project summary  

The aim of this research is to establish specific medical conditions contributing to mortality in persons with a mental illness, and to ascertain which of these conditions contribute the most to excess mortality. The research involves Aboriginal and Torres Strait Islander people. The health records of approximately 30,000 patients who have accessed public mental health services in the Darling Downs and South-West Queensland Health from 1991-2010 will be linked with the National Death Index to establish fact, date and all causes of death, as well as year of death registration, at the time of death.

Longitudinal head injury outcome study (EC 2012/3/41)

Applicant: Monash University and Epworth Hospital
Approval valid until 30 September 2013
 

Project summary  

This is a longitudinal study that has been on-going since 1995 to determine whether people who survive a traumatic brain injury (TBI) have an increased risk of death following discharge from a rehabilitation setting. The aim of this research is to determine if patients enrolled in the study since 1995 have died and if so, what was their cause of death. Linkage will be undertaken for approximately 3,300 participants with the National Death Index to obtain fact, date and all causes of death.

Florey Adelaide male aging study (FAMAS) (EC 2012/3/42)

Applicant: University of Adelaide
Approval valid until 31 November 2017
 

Project summary  

This is a longitudinal study of approximately 1,195 men aged 35-80 years and residing in the north-west suburbs of Adelaide at the time of recruitment. The aim of this particular aspect of the FAMAS study is use cause of death as part of the analysis of health outcomes and fact of death to maintain the participant data base. Linkage will be undertaken with the National Death Index to establish fact, date and all causes of death.

Assessing the impact of in utero exposure to psychotropic medications as part of a population study (The Pathways Project) of outcomes for the children of mothers with psychosis (EC 2012/3/43)

Applicant: University of Western Australia
Approval valid until 31 December 2015
 

Project summary  

This research is part of the 'Pathways Project' which links several Western Australian health data sets. The aim of the Pathways Project is to enable assessment of medications as predictors of adverse infant outcomes and of adolescent and adult morbidity. Data linkage of a study cohort of mothers in Western Australia with major mental health disorders and their children, to Pharmaceutical Benefits System records will be undertaken to establish whether in-utero exposure to psychotropic medications has negative outcomes on children.

North West Adelaide Health Study (EC 2012/3/44)

Applicant: University of Adelaide
Approval valid until 31 December 2017
 

Project summary  

The North West Adelaide Health Study (NWAH Study) is a longitudinal study begun in 1999. The study aims to collect information among residents in North West Adelaide about a range of chronic diseases (e.g. diabetes and asthma) to enable reporting on the risk factors associated with this group of diseases. Data linkage to the NDI will be undertaken to obtain date of death for those who have died.

Stage 4 of Enhanced Mortality Database project (EC 2012/3/45)

Applicant: Australian Institute of Health and Welfare
Approval valid until 31 August 2013
 

Project summary  

The purpose of the Enhanced Mortality Database (EMD) project is to create a time series of mortality data that contain enhanced information on Indigenous identification. It is being conducted in stages and is now at Stage 4. The main objectives of Stage 4 are to continue to develop the time series of enhanced mortality data by extending the linkage to cover deaths data for the period 2007-2010 that have now become available, to include additional data sets that were not included in the previous stages, and to explore other algorithms for deriving Indigenous status beyond the "Ever-Indigenous" approach.

Data linkage to produce non-duplicated client counts for National Healthcare Agreement Performance Indicator #21: Treatment rates for mental illness (EC 2012/3/46)

Applicant: Australian Institute of Health and Welfare
Approval valid until 31 December 2014
  

Project summary  

NHA performance indicator #21: Treatment rates for mental illness is defined as the proportion of the population receiving clinical mental health services. The indicator is published annually in the COAG Reform Council Report. The two main data sources for the indicator are Community Mental Health Care (CMHC) client counts at the State/Territory level and patients in receipt of Medicare subsidised services. Other relevant data sources are Department of Veterans Affairs (DVA) data covering subsidised medical treatment for eligible veterans and Private Mental Health Alliance (PMHA) data covering private psychiatric hospitals

The first phase of this project (approved as EC2010/3/39) linked Medicare PBS data with CMHC data for 3 jurisdictions and found that the combined count would be reduced by around 5% taking into account this overlap. The current proposal is for a second round of linkage, extending the work that began with 2009-10 MBS and CMHC data to linkage of 2010-11 data from MBS, CMHC (more than the 3 jurisdictions participating previously), DVA and PHMA with the aim of formalising the methodology for annual reporting.

Data linkage will be undertaken using the statistical linkage key SLK581 and postcode.

Novel and established risk factors for cardiovascular and metabolic disease: 45 and Up Study (EC 2012/3/47)

Applicant: Australian National University
Approval valid until 31 December 2015
 

Project summary  

The 45 and Up Study completed recruitment of over 265,000 participants in mid-2009. Linkage of data from 45 and Up Study participants provides the opportunity for high quality, highly efficient investigation of a range of health issues, particularly those related to health outcomes reliably ascertained through routine health records. The aim of this project is to investigate the relationship between a range of novel and established demographic, lifestyle and health-related risk factors and cardiovascular disease outcomes. It will provide data that are specific to the Australian context at the same time as contributing to knowledge internationally.

The study participants will be linked to the National Death Index to obtain date and all causes of death to investigate the relationships of various established and emerging purported cardiovascular disease risk factors to all cause and case-specific mortality, focussing on cardiovascular disease mortality.

Medication use and health outcomes in the 45 and Up Study (EC 2012/3/48)

Applicant: Australian National University
Approval valid until 31 December 2016
 

Project summary  

The 45 and Up Study completed recruitment of over 265,000 participants in mid-2009. Linkage of data from 45 and Up Study participants provides the opportunity for high quality, highly efficient investigation of a range of health issues, particularly those related to health outcomes reliably ascertained through routine health records. This project will examine the relationship between use of prescription medications and subsequent health outcomes, health services use and costs, and to examine how these relationships vary according to a range of socio-demographic, lifestyle and health related characteristics. In doing so, it will provide important evidence on the minimisation of adverse events through improved prescribing.

Particular outcomes to be investigated include: overall and cause specific hospitalisation (inpatient and emergency department), use of primary care and diagnostic services, mortality and cause specific mortality, use of other medications, impact on prescribing quality, and health. The study participants will be linked to the National Death Index to obtain date and all causes of death.

Linked perinatal, birth, death data set project (EC 2012/3/49)

Applicant: Australian Institute of Health and Welfare
Approval valid until 30 September 2019
 

Project summary  

The aim of this project is to create a new national linked perinatal, birth and death data set for the purposes of analysing the factors affecting infant and child health outcomes in Australia. The data set will be created by linking unit record level data across jurisdictions from perinatal data collections, birth records and death records. Data Linkage will be undertaken between the NDI and state and territory perinatal and births data for deaths through to age 5 and beginning with births in 2003 to obtain data and all cause of death for this group.

Prospective Evaluation of a Model to Predict Outcomes Following Endovascular Aortic Aneurysm Repair (EVAR) (EC 2012/4/51)

Applicant: University of Adelaide
Approval valid until 31 December 2015
 

Project summary  

The project involves follow-up with patients after EVAR from 1999 to 2011. The aim of this study is to collect data on mortality on the current cohort of patients who were enrolled in the NHMRC-fundeded EVAR trial. This data on post-operative mortality will be used to refine and validate the Endovascular Risk Assessment model. Identifying factors that predict early death would inform decisions on whether an EVAR procedure is the most appropriate for a patient, given their health status and anatomy of the Abdominal Aortic Aneurysm. Such a validated model will therefore be well placed to be used by surgeons and individual patients to make informed decisions on the risks and benefits of undergoing EVAR. Linkage to the National Death Index will be undertaken to establish date and cause of death.

Long term follow up of FIELD (Fenofibrate Intervention and Event Lowering in Diabetes) Cohort Study (EC 2012/4/52)

Applicant: University of Sydney
Approval valid until 31 December 2017
 

Project summary  

The project is an extension of a large multi-centre study which was completed in 2005 and assessed the effects of lipid-modifying medication among patients with Type 2 diabetes, with study participants being recruited from Australia, New Zealand and Finland. Linkage will be undertaken with the National Death Index to obtain fact, date and cause of death (for patients lost to follow up) and to the Australian Cancer Database to obtain cancer incidence.

The impact of chlamydia infection on reproductive health in women (EC 2012/4/53)

Applicant: Kirby Institute, University of New South Wales
Approval valid until 1 January 2016
 

Project summary  

Genital chlamydia infection is recognised as a major public health problem in women of reproductive age, with annual notifications in Australia rising four-fold in the last 10 years. The main control strategy is early detection and treatment, with a primary goal being to prevent longer term health consequences of the infection, however knowledge is incomplete. This study aims to provide robust estimates of the impact chlamydia infection has on longer term reproductive health consequences and involves record-linkage of key administrative health datasets.

A large cohort of women of reproductive age residing in the states of NSW and WA will be extracted from the Medicare Australia database. The cohort will be linked to Medicare Benefits Schedule data on chlamydia testing and treatment, and treatment of infertility; and to state based datasets including chlamydia notifications (to ascertain positive results from chlamydia testing), hospitalisation data (for infertility, ectopic pregnancy and other complications of early pregnancy) and midwifery data (for poor obstetric outcomes. The linked data collections will allow analyses to be conducted to examine rates of reproductive complications among women untested for chlamydia, and among women tested negative and positive for the disease. The results from this study should provide important. Information for planning and assessing the cost-effectiveness of future chlamydia control interventions.

The project has a well-defined data linkage strategy to protect the privacy of the women in the cohort. The AIHW will act in its role as an accredited Integrating Authority for the linkage of Commonwealth data. The Centre for Health Record Linkage (NSW) and the Western Australian Data Linkage Branch will facilitate the provision of state data. The researchers will have no access to the identifying information used for data linkage.

Evaluation of the role of the Prostate Cancer Specialist Nurse (EC 2012/4/54)

Applicant: Queensland University of Technology
Approval valid until 1 August 2014
 

Project summary  

This study involves Prostate Cancer Specialist Nurses (PCSNs) in 13 locations across Australia. It compares health/health outcomes for patients treated for prostate cancer pre-PCSN versus post-PCSN implementation. Data linkage with the NDI for exclusion purposes only will be undertaken.

The QSkin Sun and Health Study (EC 2012/4/57)

Applicant: Queensland Institute of Medical Research
Approval valid until 31 December 2017
 

Project summary  

This project involves a cohort of 44,000 Queenslanders aged between 40-69 years with the primary aim of deriving measures of absolute risk and analysing causal factors for melanoma and other skin cancers. The cohort will be followed up by both re-contact and data linkage until at least 2020. Linkage will be undertaken with Australian Cancer Database, National Death Index, Medical Benefits Scheme and Pharmaceutical Benefits Scheme to establish date and cause of death.

Medication adherence following hospitalisation for acute myocardial infarction (EC 2012/4/61)

Applicant: George Institute for Global Health
Approval valid until 30 June 2016
 

Project summary  

The aim of this project is to evaluate the impact of adherence and non-adherence to prescribed medication to develop quality indicators of prescribing amongst patients who have been admitted to hospital for acute myocardial infarction (AMI). Linkage will be undertaken with the National Death Index for fact and date of death, and with selected Pharmaceutical Benefits Scheme records.

Linkage to the Australian childhood immunisation register (ACIR) and state-based registers to evaluate and inform Australia's immunisation program (EC 2012/4/62)

Applicant: University of New South Wales
Approval valid until 31 December 2016
 

Project summary  

The aim of this study is to measure vaccine uptake and the factors associated with vaccine uptake and timeliness of immunisation. It will evaluate the effectiveness of currently available childhood vaccinations in reducing rates of vaccine preventable and non-vaccine preventable disease at a population level and for at-risk groups. It involves a large birth cohort in Western Australia and New South Wales (approximately 114,000 births). Linkage will be undertaken with a range of state based and Commonwealth based data sets including the National Death Index and the Australian Childhood Immunisation Registry.

Evaluation of the nurse practitioners - aged care model of care program: AIHW related component (EC 2012/4/63)

Applicant: University of Canberra
Approval valid until 28 February 2015
 

Project summary  

This project involves an evaluation of a Department of Health and Aging Nurse Practitioner Care Models of Care program which is funding 30 different models of delivering nurse practitioner (NP) services in aged care across Australia. The aim of the evaluation is to assess the effectiveness, economic viability and sustainability of NPs working in the different models from November 2012 to June 2014. One of the evaluation components involves an in depth study of 3,000 clients of NPs in each of 2012 and 2013. Linkage will be undertaken with the National Death Index and hospital morbidity data to enable analysis of the programs impact on the number and type of hospital admissions.

Project extensions and variations approved by the AIHW Ethics Committee during 2012

The Australian Prospective Diabetes Study (APDS) - a five year follow up study of the Australian Diabetes Obesity and lifestyle study (AusDiab) population cohort (EC 358)

Applicant: Baker IDI Heart and Diabetes Institute
Approval valid until 30 June 2017
 

Project summary  

This project is a 5 year prospective study established to examine the natural history of diabetes and its complications, including heart disease and kidney disease. It is a follow-up to a completed national diabetes prevalence study - the Australian Diabetes, Obesity and Lifestyle Study (AusDiab) and addresses some of the most important gaps that exist nationally and internationally in the understanding of the burden of Type 2 diabetes and related health problems. Data linkage to the NDI will be undertaken to determine causes of death for the 11,247 participants of the AusDiab population cohort.

National Cancer Statistics Clearing House Protocol (EC 2009/4/56)

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

Project summary  

The AIHW has sought approval for amendments to the existing National Cancer Statistics Clearing House (NCSCH) Protocol to allow for ongoing expansion in the scope of the Australian Cancer Database (ACD) without the need to seek an amendment from the AIHW Ethics Committee on small individual changes, such as slight changes in data linkage practices and slight changes to the NCSCH protocol necessitated by the development of the National Minimum Data Set for population-based cancer data.