The Challenge
Australian researchers don’t have rapid access to existing linked cross-jurisdictional health data to answer priority questions about population health and the health system. They’re also unable to fast-track linkage of their clinical trials and cohorts to linked cross-jurisdictional datasets, delaying the generation of potentially life-saving insights.
Developing a new research version of these data assets will better link and integrate high-value, investigator-initiated health datasets including registries, cohort studies and clinical trials from source dataset.
The Response
The Linked Data Asset for Australian Health Research (LINDAHR) project established the researcher-accessible National Health Data Hub (NHDH) data asset – previously the National Integrated Health Services Information (NIHSI) – by leveraging national linked health datasets already built by the Australian Institute of Health and Welfare (AIHW).
The project enables the progressive linkage and integration of high-value, population health, medical and social datasets, supported by a data asset framework, governance and infrastructure.
LINDAHR enables the inclusion of longitudinal person-based records for hospitalisations, emergency department and aged care services, Medicare services, subsidised medicines, disability, notifiable conditions, cancers, cancer screening, deaths, and social determinants of health.
Streamlined governance processes for safe access to these datasets supports researchers to access LINDAHR through a secure remote analysis environment.
Long-term sustainability of the data asset will be ensured through the development of operational and licensing requirements.
Outcomes
Researchers can now request access to NHDH via AIHW.
Resources including forms, protocols, guides and other documentation are also available on the AIHW website.
This project enables robust multi-jurisdictional research assessing the safety, quality, equity and value of health care and policies as well as studies of rare diseases and priority populations. It enablse timely and cost-effective research that will reduce harm and improve our surveillance and crisis responses including to pandemics.
Who Will Benefit
LINDAHR will transform the ability of researchers to make timely, high-impact discoveries that improve the health and safety of the public and healthcare workforce.
Researchers will not need to meet the otherwise substantial costs of data linkage, as well as the costs associated with the burdensome process of obtaining approval and access to linked data on a project-by-project basis.
The integrated, longitudinal, whole-of-population data will help government agencies and health service providers understand the impacts of disease and illness on our health system and health outcomes, inform policy, and save lives.
The Partners
- UNSW
- AIHW
- Australian Government Department of Health
- Queensland Health
- NSW Health
- Population Health Research Network
- University of Technology Sydney
- University of Sydney
- University of Melbourne
- Monash University
- Bond University
- The University of Queensland
- University of Western Australia
- Curtin University
- Australian National University
- University of Tasmania
- University of South Australia
- The George Institute for Global Health
- Hunter Medical Research Institute
- Baker Heart and Diabetes Institute
- Burnet Institute
- Peter MacCallum Cancer Centre
- QIMR Berghofer Medical Research Institute
- Telethon Kids Institute
- Murdoch Children’s Research Institute
Further Resources
- Read the project’s final report.