Data linkage infrastructure for cross-jurisdictional health-related research in Australia
MetadataShow full item record
Background: The 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”. Methods: The 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. Results: The 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.Conclusions: This 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.
This article is published under the Open Access publishing model and distributed under the terms of the Creative Commons Attribution License http://creativecommons.org/licenses/by/3.0/ Please refer to the licence to obtain terms for any further reuse or distribution of this work.
Showing items related by title, author, creator and subject.
Boyd, James; Randall, Sean; Ferrante, Anna; Bauer, Jacqui; McInneny, K.; Brown, Adrian; Spilsbury, Katrina; Gillies, Margo; Semmens, James (2015)Background - The technical challenges associated with national data linkage, and the extent of cross-border population movements, are explored as part of a pioneering research project. The project involved linking state-based ...
Improving the Estimation of Risk-Adjusted Grouped Hospital Standardized Mortality Ratios Using Cross-Jurisdictional Linked Administrative Data: A Retrospective Cohort Study.Spilsbury, Katrina; Rosman, D.; Alan, J.; Ferrante, A.; Boyd, J.; Semmens, J. (2017)BACKGROUND: Hospitals and death registries in Australia are operated under individual state government jurisdictions. Some state borders are located in heavily populated areas or are located near to major capital cities. ...
Addressing the challenges of cross-jurisdictional data linkage between a national clinical quality registry and government-held health dataAndrew, N.; Sundararajan, V.; Thrift, A.; Kilkenny, M.; Katzenellenbogen, J.; Flack, F.; Gattellari, M.; Boyd, James; Anderson, P.; Grabsch, B.; Lannin, N.; Johnston, T.; Chen, Y.; Cadilhac, D. (2016)Objective: To describe the challenges of obtaining state and nationally held data for linkage to a non-government national clinical registry. Methods: We reviewed processes negotiated to achieve linkage between the ...