Data linkage infrastructure for cross-jurisdictional health-related research in Australia

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 I...

Full description

Bibliographic Details
Main Authors: Boyd, James, Ferrante, Anna, O'Keefe, C., Bass, A., Randall, Sean, Semmens, James
Format: Journal Article
Published: BioMed Central 2012
Subjects:
Online Access:http://hdl.handle.net/20.500.11937/31456
_version_ 1848753385646325760
author Boyd, James
Ferrante, Anna
O'Keefe, C.
Bass, A.
Randall, Sean
Semmens, James
author_facet Boyd, James
Ferrante, Anna
O'Keefe, C.
Bass, A.
Randall, Sean
Semmens, James
author_sort Boyd, James
building Curtin Institutional Repository
collection Online Access
description 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.
first_indexed 2025-11-14T08:23:41Z
format Journal Article
id curtin-20.500.11937-31456
institution Curtin University Malaysia
institution_category Local University
last_indexed 2025-11-14T08:23:41Z
publishDate 2012
publisher BioMed Central
recordtype eprints
repository_type Digital Repository
spelling curtin-20.500.11937-314562017-09-13T15:55:04Z Data linkage infrastructure for cross-jurisdictional health-related research in Australia Boyd, James Ferrante, Anna O'Keefe, C. Bass, A. Randall, Sean Semmens, James data linkage health research infrastructure population 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. 2012 Journal Article http://hdl.handle.net/20.500.11937/31456 10.1186/1472-6963-12-480 BioMed Central fulltext
spellingShingle data linkage
health
research
infrastructure
population
Boyd, James
Ferrante, Anna
O'Keefe, C.
Bass, A.
Randall, Sean
Semmens, James
Data linkage infrastructure for cross-jurisdictional health-related research in Australia
title Data linkage infrastructure for cross-jurisdictional health-related research in Australia
title_full Data linkage infrastructure for cross-jurisdictional health-related research in Australia
title_fullStr Data linkage infrastructure for cross-jurisdictional health-related research in Australia
title_full_unstemmed Data linkage infrastructure for cross-jurisdictional health-related research in Australia
title_short Data linkage infrastructure for cross-jurisdictional health-related research in Australia
title_sort data linkage infrastructure for cross-jurisdictional health-related research in australia
topic data linkage
health
research
infrastructure
population
url http://hdl.handle.net/20.500.11937/31456