Abstract
BackgroundThe Centre for Data Linkage (CDL) has been established to enable national and cross-jurisdictional health-related research in Australia. It has been funded through the Population Health Research Network (PHRN), a national initiative established under the National Collaborative Research Infrastructure Strategy (NCRIS). This paper describes the development of the processes and methodology required to create cross-jurisdictional research infrastructure and enable aggregation of State and Territory linkages into a single linkage “map”.MethodsThe CDL has implemented a linkage model which incorporates best practice in data linkage and adheres to data integration principles set down by the Australian Government. Working closely with data custodians and State-based data linkage facilities, the CDL has designed and implemented a linkage system to enable research at national or cross-jurisdictional level. A secure operational environment has also been established with strong governance arrangements to maximise privacy and the confidentiality of data.ResultsThe development and implementation of a cross-jurisdictional linkage model overcomes a number of challenges associated with the federated nature of health data collections in Australia. The infrastructure expands Australia’s data linkage capability and provides opportunities for population-level research. The CDL linkage model, infrastructure architecture and governance arrangements are presented. The quality and capability of the new infrastructure is demonstrated through the conduct of data linkage for the first PHRN Proof of Concept Collaboration project, where more than 25 million records were successfully linked to a very high quality.ConclusionsThis infrastructure provides researchers and policy-makers with the ability to undertake linkage-based research that extends across jurisdictional boundaries. It represents an advance in Australia’s national data linkage capabilities and sets the scene for stronger government-research collaboration.
Highlights
The Centre for Data Linkage (CDL) has been established to enable national and cross-jurisdictional health-related research in Australia
The remainder of this paper describes the development of the processes and data linkage methodology required to create a cross-jurisdictional research infrastructure and the aggregation of State and Territory linkages into a single system
The state/territory data linkage units have had a major influenced on the development of the model and the CDL has benefited from working with state/territory data linkage units to understand the data, the technologies and researcher needs
Summary
Under the PHRN initiative, the CDL was tasked with “establishing a secure and efficient data linkage system to facilitate linkage between jurisdictional datasets, and between these datasets and research datasets using demographic data” [14]. For cross-jurisdictional projects, the local Linkage Unit provides the demographic data and encrypted record identifiers to the CDL. Consistent with the Cross-Jurisdictional Model, data flows and linkage activity included the following: Transfer of hospital and mortality demographic information and jurisdictional linkage keys from custodians and linkage units in NSW and WA to the CDL. Linkage of this data to create a national map Creation of project-specific linkage keys based on this map Transfer project-specific linkage keys back to the jurisdictions Transfer of the necessary clinical data from the jurisdictional custodians to the researcher
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