Abstract
Population-based data linkage has a long history in Australia from its beginnings in Western Australia in the 1970s to the coordinated national data linkage infrastructure that exists today. This article describes the journey from an idea to a national data linkage network which has impacts on the health and well-being of Australians from preventing developmental anomalies to responding to the COVID-19 pandemic. Many enthusiastic and dedicated people have contributed to Australia’s data linkage capability over the last 50 years. They have managed to overcome a number of challenges including gaining stakeholder and community support; navigating complex legal and ethical environments; establishing cross-jurisdictional collaborations, and gaining ongoing financial support. The future is bright for linked data in Australia as the infrastructure built over the last 50 years provides a firm foundation for further expansion and development, ensuring that Australia’s linked health and human services data continues to be available to address the evolving challenges of the next half century.
Highlights
Data linkage is a method of bringing together information derived from different sources, but relating to the same individual or event in a single file [1]
In 1967, Professor Michael Hobbs returned to Western Australia from Oxford University, where he had been involved with the Oxford Record Linkage Study [5]
In 1999, the Department of Health became the principal funder and the Western Australian Data Linkage Branch which incorporated the data linkage unit was established within the Health Information Centre
Summary
Data linkage is a method of bringing together information derived from different sources, but relating to the same individual or event in a single file [1]. It is not a new method; it predates the introduction of modern computers [1]. The advent of more advanced mathematical matching techniques and computer technology has enabled the expansion of the use of linked data for population-wide research It has enabled research across populations and across the life course. Linking data and the analysis of linked data requires the use of person-level data often without informed consent This means that data linkage operates within complex legal and ethical frameworks designed to protect and balance the multiple interests at play. Current challenges and plans for future development are discussed
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