The Health Studies Australian National Data Asset (HeSANDA) program aims to build the national infrastructure required to support the sharing and reuse of health research data in a way that would bring value to the research community, increase the efficiency of research, and provide benefits for the health of Australia’s population.
HeSANDA seeks to increase research impact and integrity by supporting activities like further research, meta-analysis, and clinical guideline development. By creating a national asset from the data outputs of health research projects, HeSANDA hopes to maximise the investment into health research by schemes such as the NHMRC Clinical Trials and Cohort Studies (CTCS) program.
ARDC will take an incremental approach to HeSANDA over a three year period. The initial focus is on sharing and reusing data from publicly-funded clinical trials research conducted in the academic sector. To establish this national data asset, the program will have three streams:
- 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.
Indicative timelines for Health Studies Australian National Data Asset program
Stream A: Data Development
The objective of this stream is to capture community consensus on the nature of the data asset, specifically on the:
- Research purpose and uses of the asset and the data needed to support those purposes
- Appropriate community standards of F.A.I.R. for the asset (with specific attention to access arrangements that respect participants, health services, co-investors, research communities, and institutions)
- Governance and definition of the asset
- Mechanisms to enable ongoing community commitment.
Registrations for the first series of consultation workshops will be open from 13th July 2020 to 4th August 2020.
Stream B: Infrastructure Development
The ARDC will catalyse a national health studies data asset by partnering with consortia of NHMRC Administering Institutions (AI) to build a distributed data infrastructure. Leveraging the institutions’ data management capacity and relationships, the ARDC will resource extensions to their infrastructure that enhance national interoperability, coherence, availability and reuse. The functional requirements of this infrastructure will come from the work of Stream A and Stream C.
The outcomes of these infrastructure development projects will be:
- availability of data outputs from the AI’s NHMRC-funded research projects
- infrastructure capability enabling data availability to be business as usual for the AI. Participants in this program effectively become nodes in the new health studies data asset.
- Monitoring of research outcomes (publications, grants, collaborations, projects) and broader impact (social, environmental, economic) is an essential part of the infrastructure.
Stream C: Culture and Policy Development
To complement the informatics and data management infrastructure streams, the ARDC will also resource the development of culture and policy 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 those making health studies project data available.
- Social license (e.g. establishing advisory forums to include consumer and privacy advocates).
- Awareness raising of the infrastructure and its purpose.