The future of health data in Australia

In July 2022, the Australian Academy of Health and Medical Sciences released a report reviewing the needs and requirements, challenges, and opportunities in Australia’s health data ecosystem.

Australia’s Data-Enabled Research Future: Health and Medical Sciences was the result of a project between the Australian Research Data Commons (ARDC), Australia’s five Learned Academies and ACOLA to ensure Australia can undertake excellent data-enabled research across all fields of research. The project combined the leadership and strategic insights of the Academies and ACOLA with the national data infrastructure expertise of the ARDC.

A synthesis report is available from ACOLA outlining common challenges and opportunities across the disciplines. The AAHMS report is a scan of the health environment, focusing on the use of data and data infrastructure as it relates to healthcare and medical research.

Report overview

For decades, health data has been an important tool for understanding disease, providing care and improving health. The recent growth in the collection and availability of electronic health data represents new opportunities to advance health and medical research, as well as challenges related to the safe and secure use of personal information.

Australia’s Data-Enabled Research Future: Health and Medical Sciences explores the current health and medical research data landscape, the needs and requirements of the future, challenges, and gaps and opportunities.

Key findings:

• More coordinated and coherent data infrastructure, assets, policies, governance and ethics processes would enable better health and medical research.
• Developing a national linked data asset for use across disciplines and sectors that follows the FAIR (findable, accessible, interoperable and reusable) and CARE (collective benefit, authority to control, responsibility and ethics) principles would create opportunities for research and would better facilitate research using linked person-level data.
• Growing and nurturing data skills in research and within the health system will be crucial to advancing the future of data-intensive health and medical research in Australia.
• It is crucial that the research community and data custodians build a social licence for data use in health and medical research – by growing public awareness and trust, seeking to understand public perceptions and concerns, and protecting the privacy of data collected from individuals.

Opportunities for the future

While challenges exist related to governance, ethics, privacy, data bias and data sharing, an optimised data landscape could have myriad benefits for health and medical research in Australia.

Examples of opportunities include personalised and targeted healthcare, early detection of health vulnerabilities in individuals, modelling and prediction of future health risks, and empowering individuals to access their own health data to encourage appropriate preventative and therapeutic interventions.

Download the report below or access the ACOLA synthesis and all Academy reports on the ACOLA website.