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Data integration (also known as data linkage) involves bringing together information about people, places and events in a way that protects individual privacy and confidentiality. The resulting datasets are used for statistical and research purposes only and are disposed of as soon as the project is completed.
Historically, research based on integrated datasets has been used in the health sector to examine a range of health issues and provide us with a picture of the health and well-being of our community. The results from these studies have provided valuable information on the causes of and risk factors for disease, the evaluation of new approaches to prevention, early intervention and treatment, and the assessment of new and more effective ways of delivering health services.
Watch a video presentation on the data integration process (courtesy of SA-NT DataLink) (Youtube)
The AIHW is a member of the PHRN—an Australian Government initiative established as part of the National Collaborative Research Infrastructure Strategy (NCRIS) and with continued funding from both NCRIS and the Australian Government's Education Investment Fund Super Science Initiative (EIFSSI). Additional funding and in kind support is also offered from state and territory governments, leading universities and major research institutes.
Data integration projects can only be undertaken with the approval of the independent AIHW Ethics Committee.
The AIHW’s Data Integration Advisory Committee, with members drawn from the PHRN, a state or territory government agency, a research body and a data custodian (an agency responsible for source data used in data integration), provides advice to the AIHW on establishing and maintaining appropriate governance, administrative and consultative arrangements.
A descriptive longitudinal study of Intensive Care outcomes from a private intensive care (ICUOS) (EC 2012/4/55)
Applicant: University of QueenslandApproval valid until 21 January 2015
The aims of this project are to analyse the characteristics of patients admitted to intensive care, measure mortality, and analyse the personal, health services and technological factors affecting survival rates of these patients from 2002 until present, and annually for the next five years. A particular aim is to develop a model of risk over time for cardiac surgery patients and to investigate whether team case volume has an effect on this risk. The researchers wish to link the ICU cohort with the National Death Index to establish fact and date of death for use in survival analysis.
Passports to advantage: health and capacity building as a basis for social integration (EC 2012/4/58)
Applicant: University of MelbourneApproval valid until 31 December 2013
The Passports study involved interviews with 1,325 adult prisoners in Queensland in the weeks prior to their release, and again 1, 3 and 6 months post-release. The study involves linking interview data with recidivism and health service utilisation data covering the first two years post-release. Linkage with the National Death Index will be undertaken to identify deaths within 2 years of release.
The aims of the study are to analyse the incidence, timing and causes of death in a representative cohort of adult prisoners/ex-prisoners, and thus to identify health-related predictors of mortality, in order to make evidence-based recommendations for the prevention of mortality in recently released prisoners. Previous record linkage studies have shown that ex-prisoners are at increased risk of death, however limitations of routinely collected data mean that these studies have had limited capacity to identify risk factors for death, which could inform preventive interventions.
Long term survival after colorectal surgery in elderly patients (EC 2013/1/1)
Applicant: Department of Surgery, Deakin University and Geelong HospitalApproval valid until 31 December 2014
The purpose of this study is to determine the short and long term survival after resectional surgery for colorectal cancer in patients over eighty years of age at Geelong Hospital (Victoria) compared with younger patients, and to compare these with the Australian standard population. Approximately 20% of patients undergoing surgery for colorectal cancer are over the age of eighty years, and the shorter life expectancy of these patients and their higher rate of associated comorbidities means that their treatment is often different from younger patients. The long term outcomes of older patients have been poorly studied both locally and internationally. A further aim is to assess the utility of post-operative surveillance. This may help to make better decisions about whether such elderly patients need to be subjected to expensive, invasive and potentially harmful surveillance post-surgery for bowel cancer.
Linkage to the National Death Index will be undertaken to obtain fact, date and cause of death to determine the survival rates due to cancer and other causes.
Mortality 15 years after specialist early intervention treatment for first episode of psychosis (EC 2013/1/3)
Applicant: Orygen Youth Health Centre and Centre for Youth Mental Health, Melbourne UniversityApproval valid until 1 May 2018
The effects of psychosis can be debilitating and have long and short term implications on the lives of suffers. The Early Psychosis Prevention and Intervention Centre (EPPIC), as part of the Orygen Youth Health Clinical Program (OYHCP), demonstrated the immediate benefits that come from providing specialist early intervention (SEI) to young people experiencing their first episode of psychosis. The researchers believe that investigating longer term impacts of SEI, such as mortality, physical health, neuro-cognition and vocational status, are integral to the implementation of future clinical and best practice guidelines.
This study is aimed at investigating the mortality of the First Episode Psychosis Outcome Study (FEPOS) cohort as part of a wider project designed to examine the 15 year outcomes of participants who were treated for a first episode of psychosis at the EPPIC between 1998 and 2000. Linkage to the National Death Index will be undertaken to determine fact, date and all causes of death.
The results of this study will be used to establish mortality rates for the FEPOS cohort 15 years after first episode and, more specifically, rates of natural versus unnatural (ie. suicide) cause, timing of death in relation to treatment, and the impact a range of individual morbidity characteristics had on mortality over time. Such analyses are important in the establishment of outcome and clinical performance measures.
Australian Longitudinal Study on Women's Health (EC 2013/1/7)
Applicant: University of QueenslandApproval Valid until 31 December 2016
The Australian Longitudinal Study on Women's Health (ALSWH) - widely known as Women's Health Australia - is a longitudinal population-based survey, funded by the Australian Government Department of Health and Ageing. The Project began in 1996 and examines the health of over 40,000 Australian women. The ALSWH involves three large, nationally representative, cohorts of Australian women representing three generations (born 1973-78, 1946-51 and 1921-26). The Study was designed to explore factors that influence health among women who are broadly representative of the entire Australian population. Women were randomly selected from the Medicare Australia database and invited to participate in the longitudinal study. After Survey 1 in 1996, the three age cohorts have been surveyed sequentially, one cohort per year, on a rolling basis since 1998.
The Project provides a resource to examine associations over time between aspects of women's lives and their physical and emotional health. It provides an evidence base to Department of Health and Aging - as well as other Australian and State/Territory Departments - for the development and evaluation of policy and practice in many areas of service delivery that affect women.
The AIHW will act in its role as an Integrating Authority, and link the ALSWH 1921-1926 birth cohort to a number of aged care-related Commonwealth datasets: Aged Care Funding Instrument, Resident Classification System, Community Aged Care Program, Extended Care at Home Program, Extended Care at Home - Dementia Program, Home and Community Care, and Aged Care Assessment Program. The resulting data will provide a unique and nationally representative resource for evaluating the current health and psychological policy for women in this older age group, and potentially lead to the implementation of changes that will improve health care services for this population
Linkage of Disability Services National Minimum Data Set and Home and Community Care Program National Minimum Data Set (EC 2013/1/9)
Applicant: Australian Institute of Health and WelfareApproval valid until 31 December 2014
The AIHW has been commissioned by the Standing Council on Community and Disability Services Advisory Council (SCCDSAC) to link and analyse the Disability Services National Minimum Data Set (DS NMDS) 2010-2011 and the Home and Community Care National Minimum Data Set (HACC NMDS 2010-2011. The main objectives of this project are to further the knowledge, experience and capability to conduct data linkage across community service administrative collections and to analyse the characteristics of clients who are common to the Disability Services and the Home and Community Care programs in the same time period. The outcomes are intended to provide valuable information for the development and monitoring of service needs that cross these service programs.
Chemotherapy administration within 30 days of death - A 5 year audit of 4 major tertiary hospitals (EC 2013/1/10)
Applicant: BioGrid Australia, Royal Melbourne HospitalApproval valid until 3 December 2014
Cancer is a common cause of morbidity and mortality in Australia. Chemotherapy is regularly used for the treatment of a wide variety of cancers with varying success. Palliative chemotherapy is often administered to extend and/or improve the quality of life of patients with advanced stages of cancer in Australia. However, currently there are no Australian data on the impact of palliative chemotherapy on patients. The current study aims to assess the frequency of palliative chemotherapy and its impact on quality of life, and to establish whether cancer type and any patient factors such as age, gender and socio-economic status impact on this and mortality rates. Results of this study will enable clinicians to make informed decisions about the use of palliative chemotherapy for individual patients.
Linkage will be undertaken with the National Death Index to determine fact, date and all causes of death.
Risk in lioss to follow-up in the Australian HIV Oberservatiional Database (EO 2013/2/11)
Applicant: The Kirby Institute, University of NSWApproval valid until 1 June 2014
The Australian HIV Observational Database (AHOD) is an ongoing prospective cohort study. Since its inception in 1999, the AHOD has been used to monitor the treatment and outcomes of HIV, including the pattern of anti-retroviral treatment use among different demographic groups, and HIV and non-HIV related causes of death. An important step in progressing this study is to establish measures of mortality that can ultimately be used to assess the impact of HIV-positive status on chronic disease management and health promotion.
Linkage will be undertaken with the National Death Index to determine fact and date of death.
Do abnormal autonomic function tests increase mortality in type 1 diabetes? (EO 2013/2/12)
Applicant: The Institute of Endocrinology and Diabetes, The Children’s Hospital at WestmeadApproval valid until 1 July 2016
Type 1 diabetes has a significant impact on health and is linked to increased rates of mortality. However, specific factors which lead to increased mortality amongst sufferers are often still unclear. The study will examine the impact of autonomic nerve functioning and microvascular complications on death rates amongst type 1 diabetes sufferers. The results of could potentially be used to inform risk factor modification amongst the at risk population.
Australian Stroke Clinical Registry (AuSCR) (EO 2013/2/16)
Applicant: Stroke Division, Florey Institute of Neuroscience and Mental HealthApproval valid until 1 July 2017
The Australian Stroke Clinical Registry (AuSCR) is a national, clinical quality registry of patients admitted to hospital with acute stroke or transient ischaemic attack. The registry represents a collaborative effort to monitor, promote and improve the quality of acute stroke care. It is an ongoing registry with its own governance underwritten by the Florey Institute of Neuroscience and Mental Health (affiliated with the University of Melbourne). Data collection for AuSCR commenced in 2009.
Linkage will be undertaken with AuSCR data with the National Death Index to obtain the fact, date and all causes of death, and will be repeated annually for five years.
Australian and New Zealand SNAPSHOT Acute Coronary Syndrome (EO 2013/2/19)
Applicant: Cardiology Department, Concord Repatriation General HospitalApproval valid until 21 April 2018
The Snapshot Acute Coronary Syndrome (ACS) audit involved the collection of detailed information about consecutive patients (4,296) admitted to 463 public and private hospitals in Australia and New Zealand from 14–27 May, 2012. The aims of the study are:
Linkage will be undertaken with the National Death Index to obtain fact and date of death, and all causes of death and will be repeated annually for 5 years.
Fourth Study of Mortality and Cancer Incidence in Aircraft Maintenance Personnel – (Fourth MCIS) (EO 2013/2/26)
Applicant: Research Development and Co-ordination Section, Research Development Branch, Department of Veteran’s AffairsApproval valid until 31 December 2014
This is a longitudinal follow-up study as part of phase two of the larger Study of Health Outcomes in Aircraft Maintenance Personnel (SHOAMP). The SHOAMP followed a 2001 Royal Australian Air Force Board of Inquiry following concerns that personnel had increased health risks due to exposure to chemicals used in spray sealing of F-111 fuel tanks in 1999. This project will enable the Department of Veterans’ Affairs to ascertain the extent of cancer and mortality in this group of RAAF/Civilian personnel and to develop appropriate policy responses.
The fourth MCIS intends to ascertain if there is a higher rate of death and cancer in F-111 fuel tank maintenance personnel compared to other aircraft technical trades, non-technical personnel on the same airbase and the age matched standardised Australian population. This study is a continuation of three previous Mortality and Cancer Incidence studies which make up phase two of the Study of Health Outcomes in Aircraft Maintenance Personnel (SHOAMP). The fourth MCIS will include an additional group of Tier Classified F-111 fuel tank maintenance personnel.
Linkage will be undertaken with the National Death Index to obtain fact, date and all causes of death and with the ACD to obtain cancer diagnosis and associated information.
Long-term follow up of individuals diagnosed with Type 1 diabetes mellitus in childhood (EO 2013/2/30)
Applicant: BioGrid AustraliaApproval valid until 30 November 2014
Internationally, the incidence of type 1 diabetes mellitus is rising. While children diagnosed with Type 1 diabetes mellitus (T1DM) in the 21st century can grow and develop normally, they remain at risk of complications associated with long-standing hyperglycaemia and apparently higher mortality. This study aims to describe the clinical course in terms of glycaemic trajectories, as well as complication and mortality rates in an Australian cohort of adults diagnosed with T1DM during childhood who have transitioned from paediatric services at The Royal Children’s Hospital (RCH) to adult services at the Royal Melbourne Hospital (RMH).
The aim of the study is to document the clinical outcomes and mortality rates for adults who were treated for T1DM at the RCH in childhood and who were transitioned from to adult services at RMH. Comprehensive T1DM data collections will be undertaken, from established T1DM databases at these two hospitals, accessed via BioGrid Australia.
Linkage will be undertaken with these datasets with the National Death Index to obtain fact, date and cause of death. This will enable analysis of mortality rates in individuals diagnosed with T1DM in childhood. The relationship between age at diagnosis/time since diagnosis and each of glycaemic control, onset of diabetes-related complications (including cardiovascular and cerebrovascular disease) and mortality will also be analysed.