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Australian Health Review Australian Health Review Society
Journal of the Australian Healthcare & Hospitals Association

The burdensome logistics of data linkage in Australia – the example of a national registry for congenital heart disease

Larissa K. Lloyd A B C , Calum Nicholson A B C , Geoff Strange A B C and David S. Celermajer A B C *
+ Author Affiliations
- Author Affiliations

A Clinical Research Group, Heart Research Institute, Sydney, NSW, Australia.

B Cardiology Department, Royal Prince Alfred Hospital, Level 6, Building 75, Missenden Road, Camperdown, Sydney, NSW 2050, Australia.

C Faculty of Medicine, The University of Sydney, Sydney, NSW, Australia.

Australian Health Review 48(1) 8-15
Submitted: 13 September 2023  Accepted: 21 November 2023  Published: 21 December 2023

© 2024 The Author(s) (or their employer(s)). Published by CSIRO Publishing on behalf of AHHA. This is an open access article distributed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND)



Data linkage is a very powerful research tool in epidemiology, however, establishing this can be a lengthy and intensive process. This paper reports on the complex landscape of conducting data linkage projects in Australia.


We reviewed the processes, required documentation, and applications required to conduct multi-jurisdictional data linkage across Australia, in 2023.


Obtaining the necessary approvals to conduct linkage will likely take nearly 2 years (estimated 730 days, including 605 days from initial submission to obtaining all ethical approvals and an estimated further 125 days for the issuance of unexpected additionally required approvals). Ethical review for linkage projects ranged from 51 to 128 days from submission to ethical approval, and applications consisted of 9–25 documents.


Major obstacles to conducting multi-jurisdictional data linkage included the complexity of the process, and substantial time and financial costs. The process was characterised by inefficiencies at several levels, reduplication, and a lack of any key accountabilities for timely performance of processes. Data linkage is an invaluable resource for epidemiological research. Further streamlining, establishing accountability, and greater collaboration between jurisdictions is needed to ensure data linkage is both accessible and feasible to researchers.

Keywords: congenital heart disease, data linkage, epidemiology, ethics, population health, registry.


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