Building National Health Data Infrastructure – the WA Node of HeSANDA
Chris Reid1, Christopher Reid1, John Barrett1, Janice Chan1, Shih Ching Fu1 1Curtin University, Bentley, WA, Australia
Abstract
Background: Led by the Australian Research Data Commons (ARDC), HeSANDA is the Health Studies Australian National Data Asset program.
Aim: To establish a nationwide digital infrastructure to facilitate the secure sharing and utilisation of sensitive health data collected by researchers.
Method: Invite participation to National Working Groups and use a co-design approach to ensure coherence of data standards and practices to develop a system based on the FAIR principles – Findability, Accessibility, Interoperability, and Reusability. Establish a network of health research organisations (‘Nodes’) to facilitate contributions of clinical trials metadata and research outputs, each with its own digital object identifier, to be listed in an ARDC-managed central catalogue. Requests for access to these data sets will be directed to the contributing Node via a data access request management system, and each Node will respond using its own localised governance processes.
Results: WA-HeSANDA is one of nine Nodes across Australia. The Operations Team is led by Prof Chris Reid at Curtin University and supported by the WA Health Translation Network (WAHTN) and their Partner Organisations. Key stakeholders were consulted during the co-design phase, including consumers who are contributing to designing a template for consent to research that will include options for the secondary use of data. The proof-of-concept infrastructure will be launched in June.
Conclusion: Co-design is an effective approach to developing a national infrastructure for collaborative use. Engagement with the research and consumer communities is crucial to the success of the HeSANDA program in WA.
Acknowledgement – The WA Node of the HeSANDA project received funding from the Australian Research Data Commons (ARDC). The ARDC is funded by the National Collaborative Research Infrastructure Strategy (NCRIS)
Biography
Christopher Reid is a cardiovascular epidemiologist and clinical trialist with appointments as Research Professor in both the School of Public Health at Curtin University and the School of Public Health and Preventive Medicine, Monash University. He was re-appointed as a John Curtin Distinguished Professor in 2021 and is currently Director of the Monash and Curtin Centre’s of Cardiovascular Research and Education (CCRE). His research interests focus on cardiovascular outcome trials and registries and has received over $178M as a Chief Investigator and has over 650 publications with many in the worlds premier clinical journals including NEJM, JAMA and the Lancet.