Health data collection is often publicly funded and has great potential to benefit all Australians. By delivering the Health Data Australia service, tools and other resources, the Health Studies Australian National Data Asset (HeSANDA) program is adding value to health data by ensuring that it is efficiently, safely and widely used by more researchers.
A wealth of data is created through health research studies, including information about the people taking part in the research, their health and their response to interventions being studied.
The data collected across studies is valuable for more than just the original piece of research. It is essential for guiding clinical practices, informing the design of new studies, and can be utilised in new analyses to generate new research findings. Existing data collections can also be used for training the next generation of researchers, technology and clinicians. However, issues of patient privacy and the naturally siloed approaches of research groups and government jurisdictions means that sharing data for these valuable purposes is complex and sometimes impossible.
The ARDC is playing a critical role in partnership with the health research community to synchronise efforts, align approaches and build national data sharing capability.
Find and share health data for research.
Use nowOur Health Studies Australian National Data Asset (HeSANDA) program is building national infrastructure to allow researchers to access and share data from health studies, including clinical trials, cohort studies and other data valuable for research.
We’re taking an incremental approach to HeSANDA over several years. We initially focused on sharing and reusing data from publicly-funded clinical trials by universities and research organisations and launched Health Data Australia – a new online portal to help researchers access that data. As we continue our work with clinical trials, we’re now extending our support to cohort studies, clinical registries and other health research areas. And as part of the People Research Data Commons, we’ll be working to address other key data challenges for health research.
Together with our partners, we’re establishing new national research capability based on the priorities below.
Informed by the NCRIS facilitation process, HeSANDA uses a highly consultative method that engages with researchers, health consumers, research institutions, infrastructure providers, funders, and policy makers to build consensus around the purpose, requirements, and design of national health research infrastructure. We then work with these key stakeholders to build shared, federated data infrastructure. We adopt a phased approach (pictured below) that follows our stakeholder’s Guiding Principles.
We produced a report on our consultation process for HeSANDA Clinical Trials: HeSANDA Development Priorities: Research community consultation report. We also presented an information session on the design phase, which is available to watch.
Based on the success of our work with the clinical trials sector, we’re now using that same successful approach to collaborate with researchers working with cohort studies, clinical registries and other study types.
This involves building consensus about which data and other health study outputs have the highest potential value for secondary research, and the data standards and practices required for transforming these into a national asset. We work with stakeholders to determine:
This involves developing the practices and systems required to create a nationally distributed infrastructure. Guided by the Data Development and the Policy and Culture Development activities, we’ve established a national network of health research organisations who facilitate data sharing and reuse.
We held an information session about HeSANDA infrastructure development in 2021. View the slides and watch the recording.
This involves enabling the culture and policies required to make HeSANDA beneficial for the research and wider communities. We resource activities to address some of the potential obstacles and enablers in these areas. Activities can include:
Alongside the research community, we developed the HeSANDA Guiding Principles, informed by the requirements of the clinical trials research community and health consumers to guide the development of health data sharing infrastructure under the HeSANDA program.
In 2023, we published the Data sharing agreement development guidelines. They help those wishing to share data and those wanting to access the data understand when a data sharing agreement (DSA) is required, what is typically covered in it, and how you should go about producing it.
Our work has been guided by an Advisory Committee composed of key national health research organisations. Members currently include:
HeSANDA Clinical Trials is a network of 9 infrastructure nodes representing 72 research organisations, covering the majority of Australia’s states, territories, and health researchers. These organisations are working together to deliver coherent data practices and coordinated data services at a national scale.
Contact the HeSANDA Queensland Node.
Contact the Melbourne Academic Centre for Health (MACH) Clinical Trials Consortium Node.
Contact the Mental Health Node.
Contact the Monash and Partners Node.
Contact the National Cancer Cooperative Trials Group Node via the node email.
Contact the Northern Australia Node.
Contact the South Australia Node.
Contact the Sydney Node.
Contact the Western Australia Node.
HeSANDA Cohort Studies is a partnership between the ARDC and more than 40 health organisations represented by 7 nodes. The nodes and partners work together to deliver coherent data practices and coordinated data services at a national scale.
The HeSANDA Cohort Studies nodes and partner organisations are:
Find and request access to clinical trial data now via Health Data Australia.
Health data collection is often publicly funded and HeSANDA will add value by ensuring this data is efficiently, safely and widely used by more researchers. This, in turn, will increase the health benefits to all Australians.
The program is increasing research impact and integrity by supporting further research, meta-analysis, and clinical guideline development. A national asset from the data outputs of health research projects maximises the research investment made by schemes such as the NHMRC Clinical Trials and Cohort Studies program.
Harnessing Australia’s difficult-to-access health research data will bring immense value to health research, maximising the return on investment of past research and allowing future research to build upon it to improve health outcomes for Australians. While HeSANDA’s primary focus is the academic research sector, the ARDC is growing its digital research services for the medical and health research community. It aims to catalogue and share other types of health and medical data and provide secure data access for clinical trials via the People Research Data Commons. To learn more, register your interest.
Building on the success of our work with the clinical trials community, the ARDC is expanding the HeSANDA program to support even more parts of the health research sector. In 2023, we consulted with stakeholders from cohort studies and clinical registries on how best to extend the coverage of our infrastructure.
In 2025, we kicked off HeSANDA Cohort Studies, working with 40 health organisations represented by 7 nodes to expand Health Data Australia to support researchers working with longitudinal health cohort data, unlocking new possibilities for research, innovation and public health.
The extension of the HeSANDA program will form a key component of a larger portfolio of investment into national health research data infrastructure, the ARDC’s People Research Data Commons (People RDC).
