Hannah C Moore1, Tenniel Guiver2, Anthony Woollacott3, Nicholas de Klerk1, Heather F Gidding4. 1. Wesfarmers Centre of Vaccines and Infectious Diseases, Telethon Kids Institute, The University of Western Australia. 2. Australian Institute of Health and Welfare, Australian Capital Territory. 3. Population Health Research Network, Western Australia. 4. School of Public Health and Community Medicine, UNSW Medicine, The University of New South Wales.
Abstract
OBJECTIVE: To describe the realities of conducting a cross-jurisdictional data linkage project involving state and Australian Government-based data collections to inform future national data linkage programs of work. METHODS: We outline the processes involved in conducting a Proof of Concept data linkage project including the implementation of national data integration principles, data custodian and ethical approval requirements, and establishment of data flows. RESULTS: The approval process involved nine approval and regulatory bodies and took more than two years. Data will be linked across 12 datasets involving three data linkage centres. A framework was established to allow data to flow between these centres while maintaining the separation principle that serves to protect the privacy of the individual. CONCLUSIONS: This will be the first project to link child immunisation records from an Australian Government dataset to other administrative health datasets for a population cohort covering 2 million births in two Australian states. IMPLICATIONS: Although the project experienced some delays, positive outcomes were realised, primarily the development of strong collaborations across key stakeholder groups including community engagement. We have identified several recommendations and enhancements to this now established framework to further streamline the process for data linkage studies involving Australian Government data.
OBJECTIVE: To describe the realities of conducting a cross-jurisdictional data linkage project involving state and Australian Government-based data collections to inform future national data linkage programs of work. METHODS: We outline the processes involved in conducting a Proof of Concept data linkage project including the implementation of national data integration principles, data custodian and ethical approval requirements, and establishment of data flows. RESULTS: The approval process involved nine approval and regulatory bodies and took more than two years. Data will be linked across 12 datasets involving three data linkage centres. A framework was established to allow data to flow between these centres while maintaining the separation principle that serves to protect the privacy of the individual. CONCLUSIONS: This will be the first project to link child immunisation records from an Australian Government dataset to other administrative health datasets for a population cohort covering 2 million births in two Australian states. IMPLICATIONS: Although the project experienced some delays, positive outcomes were realised, primarily the development of strong collaborations across key stakeholder groups including community engagement. We have identified several recommendations and enhancements to this now established framework to further streamline the process for data linkage studies involving Australian Government data.
Authors: H F Gidding; L McCallum; P Fathima; T L Snelling; B Liu; N de Klerk; C C Blyth; V Sheppeard; R M Andrews; L Jorm; P B McIntyre; H C Moore Journal: Int J Popul Data Sci Date: 2017-09-18
Authors: Gladymar Pérez Chacón; Parveen Fathima; Mark Jones; Rosanne Barnes; Peter C Richmond; Heather F Gidding; Hannah C Moore; Thomas L Snelling Journal: PLoS One Date: 2021-12-07 Impact factor: 3.240