Progress with Access to Cross-jurisdictional Linked Data in Australia

IntroductionAustralia is a federal, parliamentary, constitutional monarchy which consists of six states and two territories. As a result there is no single national data collection that follows individuals’ interactions with health and human services from birth to death. Therefore researchers need access to linked data from multiple jurisdictions. Objectives and ApproachThe objective of this project was to evaluate the progress of the PHRN in providing researchers access to linkage infrastructure for cross-jurisdictional and multi-jurisdictional projects. Data from the PHRN Online Application System (OAS) was analysed to determine: The number of applications for linked data received The number of jurisdictions involved in each application The number of applications involving researchers from multiple jurisdictions The number of applications involving linkage of state and Commonwealth data An analysis of peer reviewed publications resulting from the use of the infrastructure was also conducted. ResultsAustralia has a unique distributed national data linkage system which enables linkage of data both within and between jurisdictions. Each jurisdiction (state/territory and Commonwealth) has a linkage unit which provides linkage services within that jurisdiction. For cross-jurisdictional linkage, depending on the design of the specific project, the linkage is conducted either by the national data linkage unit or a combination of the national linkage unit and the state/territory data linkage units. Analysis of the data from the OAS shows an increase in the applications for cross-jurisdictional and multi-jurisdictional linked data. There is a mix of requests for only state/territory data and for state/territory/Commonwealth data. The number of national collaborations and publications has also increased. Conclusion/ImplicationsCross-jurisdictional linkage is challenging in a federated country. There are many legislative, regulatory and policy barriers. Despite these challenges, Australia has developed a national system enabling researchers to apply through a central system and for jurisdictions to work together to link and provide access to cross-jurisdictional and multi-jurisdictional data.