Building national infrastructure to support the sharing and reuse of health research data
Health Translation SA is part of a national initiative to support the sharing and reuse of health research data in ways that bring value to the research community, increase the efficiency of research, and provide benefits for the health of Australia’s population.
Health research studies generate a wealth of data, including information about the people taking part in the research, their health and their response to interventions being studied.
The data collected in one study can be extremely valuable to other studies. However, the challenges of patient privacy and the naturally siloed approaches of research groups and state jurisdictions have created barriers to efficient data sharing. Overcoming such barriers and tapping into health research data will maximise the return on investment of past research and allow future research to build upon it to improve health outcomes for Australians.
Similar capability has already been established in European health research infrastructure (ECRIN and EOSC Life), and data sharing platforms are emerging in the UK and USA. The Australian Research Data Commons (ARDC) is playing the critical role in ensuring that Australia is not left behind by partnering with the health research community to synchronise efforts, align approaches and build national data capability.
Led by the Australian Research Data Commons (ARDC), the Health Studies Australian National Data Asset (HeSANDA) program aims to:
- Bring together the health research community to establish national infrastructure to support the sharing and reuse of health research data.
- Bring value to the research community by stimulating new ideas and enabling the data outputs of one study to become the inputs for another.
- Increase research impact and integrity by supporting further research, meta-analysis, and clinical guideline development. ARDC is taking an incremental approach to the HeSANDA program over a 3-year period (2020-2023). The initial focus is on sharing and reusing data from publicly funded clinical trials research conducted in the academic sector. The program consists of 3 work streams as illustrated in Figure 1.:
- Data Development: identifying the data needs, standards, and practices required by researchers involved in data sharing
- Infrastructure: investing in a coherent nationally distributed infrastructure.
- Culture & Policy: enabling the culture and policies required to make the health data asset beneficial for the research and wider communities.
For more information visit the ARDC website.
An initial nine lead agencies (Nodes) were appointed around Australia as part of the HeSANDA network to support the infrastructure development. The nine nodes represent 72 research organisations nationally (18 universities, 10 medical research institutes, 19 health service operators, 16 clinical trial networks and 9 other organisations). The Nodes and lead organisations are listed below:
- Health Studies Australian National Data Asset: Queensland Node Proposal
Brisbane Diamantina Health Partners (University of Queensland)
- MACH Clinical Trials Consortium
University of Melbourne
- Mental Health
- Monash and Partners HeSANDA Node
- National Cancer Cooperative Trials Groups
Australasian Leukaemia and Lymphoma Group
- Northern Australian Node
Menzies School of Health Research
- SA HeSANDA Node
South Australian Health & Medical Research Institute (SAHMRI) the administering institution for Health Translation SA (HTSA)
- Sydney Health Partners led by NHMRC Clinical Trials Centre, at The University of Sydney
University of Sydney
- WAHTN Clinical Trials and Data Management Centre
Health Translation SA (HTSA), in collaboration with SA partners, is leading the SA HeSANDA Node. Specifically, we are working together to:
- Determine the best state-wide data sharing approach for SA
- Incorporate the nominated projects and testing elements within the HeSANDA initial program phase
- Discover and develop business processes to ensure sustainability for future trials
- Review, expand and create research policies applicable for data sharing
- Define data requirements and activities for new trials.
The HeSANDA project received investment (https://doi.org/10.47486/HS008) from the Australian Research Data Commons (ARDC). The ARDC is funded by the National Collaborative Research Infrastructure Strategy (NCRIS).
A Steering Committee (SC) has been established which includes nominees from HTSA Partners to ensure the alignment of strategic goals between, and across partner organisations, and the delivery of the HeSANDA network requirements. The Steering Committee reports directly to the HTSA Board of Partners, which unites eleven academic, research and health care agencies in SA. Expert Working Groups assist the SC, as needed, with members selected based on their expertise.
This structure supports systematic coverage of a significant number of research organisations across SA, ensuring direct links from the Node to research strategy, operations and workflow.
Prof Derek Chew (Chair), CEIH & Flinders University
Dr Karen Best, SAHMRI Women & Kids Theme
Dr Erin Morton, Flinders University
Dr Liz Buckley, Flinders University
Prof John Beltrame, University of Adelaide
A/Prof Stephanie Reuter Lange, University of SA
Dr Elsa Dent, Torrens University
Ms Melanie Gentgall, SAHMRI
Dr Gerry O’Callaghan, SA Health CALHN
Mr Ben Shores, SA Health
Prof Chris Karapetis, Consumer/Secondary Researcher, SA Health (SALHN)
Saran Chamberlain, Consumer/Clinical Trial Participant
SA HeSANDA Node Team
Ms Wendy Keech, HTSA SA (HeSANDA Node Lead)
Mr Andrew Brock, SAHMRI ICT
Ms Tamara Hooper, HTSA
Ms Nicole Sargent, HTSA
HeSANDA SA Brochure
HeSANDA SA Communication plan
Data Sharing Guidelines
This Data Sharing Guideline document applies to studies where the coordinating research centre is based in South Australia and registered within the ARDC Health Data Australia (HDA) portal with the support of HTSA.