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.. 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.
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.
We’re taking an incremental approach to HeSANDA over 3 years. The initial focus is on sharing and reusing data from publicly-funded clinical trials by universities and research organisations.
Together with our partners, we’re establishing the national research capability based on the three investment priorities below.
This involves determining the “quality, relevance, consistency and availability” of health research information to maximise its value for secondary uses. The objective is to capture community consensus on the data standards and practices required for a national asset, such as:
- 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).
This involves investing in a coherent nationally distributed infrastructure. Guided by Data and Policy and Culture development, we’re establishing a network of health research organisations to provide a coordinated set of data services that will facilitate data sharing and reuse. Read details about this activity.
Culture and Policy Development
This involves enabling the culture and policies required to make HeSANDA beneficial for the research and wider communities. We’ll resource the development of a culture and policy plan to address some of the potential obstacles and enablers of this program. This can include:
- supportive and harmonious policy arrangements at institutions, publishers, scholarly societies, and funders
- incentive mechanisms for data providers (codifying expectations for data citation, data collaboration and responsible use)
- skills development for people providing project data on health studies social licence activities such as establishing advisory forums to include consumer and privacy advocates
- raising awareness of the infrastructure and its purpose
- mechanisms to enable ongoing community involvement and ownership of the national asset.
The Advisory Committee for the initiative includes key national health research organisations:
- 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.
Informed by the NCRIS facilitation process, the HeSANDA initiative implemented an 18-month systematic consultation and co-design process with assistance from the Australian Institute of Health and Welfare, Australian Clinical Trials Alliance, clinical trialists, researchers, health consumers and research institutions, as well as infrastructure providers and policy makers involved in clinical trials research. This established consensus around the purpose, content, requirements, and design for a national health data asset to be created through the HeSANDA initiative.
Consultation and Co-Design
The first consultations were completed in August 2020 with the clinical trials research community. 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 then collaborated with a network of more than 70 health research organisations to co-design HeSANDA’s national infrastructure. We continue to work with these organisations over the Development and Deployment phases.
The consultative approach we’ve adopted has produced a set of community and stakeholder-defined Guiding Principles that inform the development process and broader HeSANDA initiative.
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.
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