Data integration at the AIHW
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.
The data integration process
Watch a video presentation on the data integration process (courtesy of SA-NT DataLink) (Youtube)
The AIHW and the Population Health Research Network (PHRN)
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.
Ethical oversight and governance
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.
Projects
Project approved in previous years
Projects approved by the AIHW Ethics Committee during 2013
A descriptive longitudinal study of Intensive Care outcomes from a private intensive care (ICUOS) (EC 2012/4/55)
Applicant: University of Queensland
Approval valid until 21 January 2015
Project summary
The aims of this project are to analyse the characteristics of patients admitted to intensive care, measure mortality, and analyse the personal, health services and technological factors affecting survival rates of these patients from 2002 until present, and annually for the next five years. A particular aim is to develop a model of risk over time for cardiac surgery patients and to investigate whether team case volume has an effect on this risk. The researchers wish to link the ICU cohort with the National Death Index to establish fact and date of death for use in survival analysis.
Passports to advantage: health and capacity building as a basis for social integration (EC 2012/4/58)
Applicant: University of Melbourne
Approval valid until 31 December 2013
Project summary
The Passports study involved interviews with 1,325 adult prisoners in Queensland in the weeks prior to their release, and again 1, 3 and 6 months post-release. The study involves linking interview data with recidivism and health service utilisation data covering the first two years post-release. Linkage with the National Death Index will be undertaken to identify deaths within 2 years of release.
The aims of the study are to analyse the incidence, timing and causes of death in a representative cohort of adult prisoners/ex-prisoners, and thus to identify health-related predictors of mortality, in order to make evidence-based recommendations for the prevention of mortality in recently released prisoners. Previous record linkage studies have shown that ex-prisoners are at increased risk of death, however limitations of routinely collected data mean that these studies have had limited capacity to identify risk factors for death, which could inform preventive interventions.
Long term survival after colorectal surgery in elderly patients (EC 2013/1/1)
Applicant: Department of Surgery, Deakin University and Geelong Hospital
Approval valid until 31 December 2014
Project summary
The purpose of this study is to determine the short and long term survival after resectional surgery for colorectal cancer in patients over eighty years of age at Geelong Hospital (Victoria) compared with younger patients, and to compare these with the Australian standard population. Approximately 20% of patients undergoing surgery for colorectal cancer are over the age of eighty years, and the shorter life expectancy of these patients and their higher rate of associated comorbidities means that their treatment is often different from younger patients. The long term outcomes of older patients have been poorly studied both locally and internationally. A further aim is to assess the utility of post-operative surveillance. This may help to make better decisions about whether such elderly patients need to be subjected to expensive, invasive and potentially harmful surveillance post-surgery for bowel cancer.
Linkage to the National Death Index will be undertaken to obtain fact, date and cause of death to determine the survival rates due to cancer and other causes.
Mortality 15 years after specialist early intervention treatment for first episode of psychosis (EC 2013/1/3)
Applicant: Orygen Youth Health Centre and Centre for Youth Mental Health, Melbourne University
Approval valid until 1 May 2018
Project summary
The effects of psychosis can be debilitating and have long and short term implications on the lives of suffers. The Early Psychosis Prevention and Intervention Centre (EPPIC), as part of the Orygen Youth Health Clinical Program (OYHCP), demonstrated the immediate benefits that come from providing specialist early intervention (SEI) to young people experiencing their first episode of psychosis. The researchers believe that investigating longer term impacts of SEI, such as mortality, physical health, neuro-cognition and vocational status, are integral to the implementation of future clinical and best practice guidelines.
This study is aimed at investigating the mortality of the First Episode Psychosis Outcome Study (FEPOS) cohort as part of a wider project designed to examine the 15 year outcomes of participants who were treated for a first episode of psychosis at the EPPIC between 1998 and 2000. Linkage to the National Death Index will be undertaken to determine fact, date and all causes of death.
The results of this study will be used to establish mortality rates for the FEPOS cohort 15 years after first episode and, more specifically, rates of natural versus unnatural (ie. suicide) cause, timing of death in relation to treatment, and the impact a range of individual morbidity characteristics had on mortality over time. Such analyses are important in the establishment of outcome and clinical performance measures.
Australian Longitudinal Study on Women's Health (EC 2013/1/7)
Applicant: University of Queensland
Approval Valid until 31 December 2016
Project summary
The Australian Longitudinal Study on Women's Health (ALSWH) - widely known as Women's Health Australia - is a longitudinal population-based survey, funded by the Australian Government Department of Health and Ageing. The Project began in 1996 and examines the health of over 40,000 Australian women. The ALSWH involves three large, nationally representative, cohorts of Australian women representing three generations (born 1973-78, 1946-51 and 1921-26). The Study was designed to explore factors that influence health among women who are broadly representative of the entire Australian population. Women were randomly selected from the Medicare Australia database and invited to participate in the longitudinal study. After Survey 1 in 1996, the three age cohorts have been surveyed sequentially, one cohort per year, on a rolling basis since 1998.
The Project provides a resource to examine associations over time between aspects of women's lives and their physical and emotional health. It provides an evidence base to Department of Health and Aging - as well as other Australian and State/Territory Departments - for the development and evaluation of policy and practice in many areas of service delivery that affect women.
The AIHW will act in its role as an Integrating Authority, and link the ALSWH 1921-1926 birth cohort to a number of aged care-related Commonwealth datasets: Aged Care Funding Instrument, Resident Classification System, Community Aged Care Program, Extended Care at Home Program, Extended Care at Home - Dementia Program, Home and Community Care, and Aged Care Assessment Program. The resulting data will provide a unique and nationally representative resource for evaluating the current health and psychological policy for women in this older age group, and potentially lead to the implementation of changes that will improve health care services for this population
Linkage of Disability Services National Minimum Data Set and Home and Community Care Program National Minimum Data Set (EC 2013/1/9)
Applicant: Australian Institute of Health and Welfare
Approval valid until 31 December 2014
Project summary
The AIHW has been commissioned by the Standing Council on Community and Disability Services Advisory Council (SCCDSAC) to link and analyse the Disability Services National Minimum Data Set (DS NMDS) 2010-2011 and the Home and Community Care National Minimum Data Set (HACC NMDS 2010-2011. The main objectives of this project are to further the knowledge, experience and capability to conduct data linkage across community service administrative collections and to analyse the characteristics of clients who are common to the Disability Services and the Home and Community Care programs in the same time period. The outcomes are intended to provide valuable information for the development and monitoring of service needs that cross these service programs.
Chemotherapy administration within 30 days of death - A 5 year audit of 4 major tertiary hospitals (EC 2013/1/10)
Applicant: BioGrid Australia, Royal Melbourne Hospital
Approval valid until 3 December 2014
Project summary
Cancer is a common cause of morbidity and mortality in Australia. Chemotherapy is regularly used for the treatment of a wide variety of cancers with varying success. Palliative chemotherapy is often administered to extend and/or improve the quality of life of patients with advanced stages of cancer in Australia. However, currently there are no Australian data on the impact of palliative chemotherapy on patients. The current study aims to assess the frequency of palliative chemotherapy and its impact on quality of life, and to establish whether cancer type and any patient factors such as age, gender and socio-economic status impact on this and mortality rates. Results of this study will enable clinicians to make informed decisions about the use of palliative chemotherapy for individual patients.
Linkage will be undertaken with the National Death Index to determine fact, date and all causes of death.