Health Data Australia Expands to Cohort Studies: A New Chapter in Health Data Sharing

The ARDC and partners have launched a new project to expand Australia’s health data sharing catalogue, Health Data Australia, to include cohort studies alongside clinical trial data.

Health Data Australia was launched in 2023 to enable researchers to share, find and request access to health studies data. Initially focused on clinical trials, it was developed through the HeSANDA program, a partnership between the ARDC and 72 health organisations, represented by 9 nodes from across Australia.

Building on the success of its clinical trials data sharing infrastructure, HeSANDA is now broadening its scope to support researchers working with longitudinal health cohort data, unlocking new possibilities for research, innovation and public health.

Cohort studies, which follow groups of individuals over extended periods, are invaluable for understanding the progression of diseases, the impact of lifestyle and social factors, and the long-term effects of treatments. These datasets are rich with insights that can inform policy, guide clinical practice and support the development of new treatments.

HeSANDA cohorts is a partnership between the ARDC and more than 40 health organisations represented by 7 nodes. The nodes are led by: UNSW, Health Translation Queensland, Health Translation SA, WA Health Translation Network, Melbourne Academic Centre for Health (MACH), Deakin University and the Australian Data Archive.

Strategic Alignment with National Research Infrastructure

Dr Adrian Burton, Director of the People Research Data Commons at the ARDC, highlighted the strategic importance of this expansion. 

“Cohort studies are a goldmine of observational health data for researchers to use in new research. The inclusion of cohort studies in HeSANDA complements the existing interventional data from clinical trials to provide researchers with a richer mix of data for health research.  

“This is part of the vision of the People Research Data Commons to make it easier for researchers to find data for impactful research across Australia’s siloed health data landscape.  Extending coverage to government health datasets, national facilities, experimental data and beyond is part of the forward roadmap. This is about enabling researchers to collaborate more effectively and build the evidence for improvements to healthcare  that benefit all Australians.”

The expansion is part of the ARDC’s People Research Data Commons, which aims to address key challenges in health research data management and accessibility. By creating a federated, secure, and interoperable infrastructure, HeSANDA empowers researchers to find and reuse data that would otherwise remain siloed.

One of the key partners in this initiative, Associate Professor Karen Lamb from the Methods and Implementation Support for Clinical and Health research (MISCH) Hub at the Melbourne School of Population and Global Health, University of Melbourne, expressed enthusiasm about the project. “We’re delighted to be part of HeSANDA’s cohort studies expansion. Longitudinal cohort data are essential to health research, helping understand risk factors for different health conditions. Having a national framework to share cohort data will improve knowledge and access to the wealth of data available in Australia. This will enable greater understanding of population health and the ability to develop targeted health interventions.”

Why Cohort Data Matters

Cohort studies provide a unique lens into health over time, capturing variables that evolve with age, environment, and lifestyle. This makes them particularly valuable for studying chronic conditions, mental health, aging, and the long-term effects of early-life exposures. Researchers can use cohort data to identify risk factors, track disease progression, and evaluate preventive strategies.

The Broader Value of Data Sharing

The benefits of data sharing extend far beyond the research community. For society, it means faster responses to emerging health challenges, more informed public health policies, and better outcomes for patients. For research participants, it ensures that their contributions have lasting impact, supporting not just one study but potentially dozens of future investigations.

Moreover, shared cohort data can be used to validate findings, reduce duplication of effort, and foster innovation through cross-disciplinary collaboration. It also supports transparency and reproducibility, which are cornerstones of robust scientific practice.

Health data sharing is accelerating research and health improvements internationally. Similar capability to Health Data Australia has been established in European health research infrastructure (ECRIN and EOSC Life), and data sharing platforms are emerging in the UK and the US. The HeSANDA initiative is ensuring Australian researchers maintain their reputation for world-class health research by incorporating the opportunities of secondary research.

A Collaborative Future for Health Research

The ARDC’s consultative approach – engaging researchers, institutions, health consumers, and policy makers – has been central to HeSANDA’s success. This collaborative model ensures that the infrastructure meets the real-world needs of the health research community while upholding the highest standards of data governance and privacy.

As HeSANDA continues to evolve, its expansion into cohort studies marks a significant milestone in Australia’s journey toward a more connected and impactful research ecosystem. With national infrastructure in place, the future of health research looks more open, collaborative, and promising than ever.

Learn more about HeSANDA Cohort Studies and visit Health Data Australia.

HeSANDA is a co-investment partnership with the Australian Research Data Commons (ARDC) through the People Research Data Commons. The ARDC is enabled by the Australian Government’s National Collaborative Research Infrastructure Strategy (NCRIS).