Health Studies Australian National Data Asset (HeSANDA)

Improving access to health research data for maximum benefit
A doctor in front of computer screen checking patient's results
Who will benefit
Australia’s health research community, the Australian public

The Challenge

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.

The Approach

Our 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 multiple years. The initial focus was on sharing and reusing data from publicly-funded clinical trials by universities and research organisations. A major output from that work was the launch of 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.

Consultation and Co-Design

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.

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.

Three cyan arrows, labelled "Consultation", "Co-design" and "Development"

Data Development

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:

  • the research purpose and uses of shared health data
  • the information and data needed to support those purposes
  • the standards and quality required of the data
  • appropriate community practices of FAIR data sharing (with specific attention to access arrangements that respect participants, health services, co-investors, research communities, and institutions).

Infrastructure Development

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.

Culture and Policy Development

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:

  • supportive and harmonious policy arrangements at institutions, publishers, scholarly societies, and funders
  • resources to support data governance including ethics and consent, including a participant-centred, simplified, national Participant Information Sheet and Consent Form (PICF) template by the CT:IQ InFORMed project
  • skills and guidance for data providers and secondary researchers
  • raising awareness of the infrastructure and its purpose
  • mechanisms to enable ongoing community involvement and ownership of the national asset.


Our work has been guided by an Advisory Committee composed of key national health research organisations. Members currently include:

  • Australian Clinical Trials Alliance
  • Australian Health Research Alliance
  • Australian New Zealand Clinical Trials Registry
  • Cochrane Australia
  • Consumers Health Forum of Australia
  • National Health & Medical Research Council (NHMRC)
  • Population Health Research Network
  • Research Australia.

Current Projects

From 2020 to 2023, we focused our work on the clinical trials community. The first consultations were completed in August 2020, and the outcomes of these consultations are detailed in the Development Priorities Consultation Report . These set the direction of the asset based on the data development principles.

A second round of consultations were held with key stakeholders: clinical trialists, research participants, and health consumers. These workshops validated and refined HeSANDA’s approach. The outcomes are detailed in the Stakeholder Consultation Report.

Following the consultation phase, ARDC established a network of more than 70 health research organisations to co-design and build HeSANDA’s national infrastructure. These partnerships will continue as part of the People Research Data Commons:

Cohort Studies and Beyond

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.

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).

HeSANDA for Health Cohort Studies

Following our consultation, the ARDC is now engaging with key stakeholder groups to refine the scope of an infrastructure program to support Australian health cohort studies.

Help co-design HeSANDA for Health Cohort Studies – join our workshops in July and August 2024. Register now.

Read the report on the consultations.

HeSANDA for Clinical Quality Registries

The ARDC consulted with the Australian clinical quality registries community to assess opportunities to develop a research data infrastructure program to support Australian clinical quality registries. We are waiting for the release of the revised Australian Clinical Quality Registries Framework before deciding on our next steps.

Read the report on the consultations.


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 will increase research impact and integrity by supporting further research, meta-analysis, and clinical guideline development. Creating a national asset from the data outputs of health research projects will maximise 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.

Key Resources

  • Learn more about HeSANDA, its value, how it works and the HeSANDA network from HeSANDA flyer.
  • Use the simplied participant information and consent form (PICF) created through the InFORMed project – view the PICF template and user guide



Current Phase

In progress