The Health Studies Australian National Data Asset (HeSANDA) program seeks to create a distributed data asset from the data outputs of health research projects, explicitly but not exclusively from the NHMRC Clinical Trials and Cohort Studies - CTCS - program. This asset is designed to support further research, meta-analysis, and clinical guideline development.
Over a three year period, a distributed data infrastructure capability will be established that could cover the major outputs of NHMRC funded health studies. To realise a health studies data commons, the program will have three streams:
- Data: shared data standards and data practices.
- Infrastructure: a coherent distributed infrastructure.
- Culture: enabling culture and policy.
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:
- business purpose of the asset and type of 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.
There is currently an opportunity for interested parties to be involved in Stream A.
Stream B: Infrastructure Development
The ARDC will catalyse a national health studies data commons 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.
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 commons.
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 (eg establishing advisory forums to include consumer and privacy advocates).
- Awareness raising of the infrastructure and its purpose.
Feedback from Stream B participants will provide input into this stream.