The Health Studies Australian National Data Asset (HeSANDA) program is building national infrastructure to support the sharing and reuse of sensitive health research data.
The HeSANDA Infrastructure Development projects form one of 3 investment priorities within that program.
Our HeSANDA infrastructure development projects will deliver the infrastructure to enable the creation of a national health data asset with the help of research institutions, organisations and other stakeholders involved in clinical trials research. This national data service will support the discoverability and accessibility of clinical trials datasets to foster increased sharing.
We conducted initial consultations with the clinical trials research community, research participants, health consumers, and clinical trialists. These consultations identified 3 development priorities:
Coherent Data Practices: Research community and stakeholder-defined data sharing practices for minimum information requirements, metadata design, data access, and ethics and consent
Coordinated Data Services: A distributed network of infrastructure nodes to supply clinical trials metadata and research outputs according to the Coherent Data Practices
Federation Services: Interfaces, applications, and services to allow research and data discovery, data request and access, and additional functionality across the node network.
In response to these priorities, the ARDC released an open call for clusters of research organisations to develop the initial set of infrastructure nodes in the HeSANDA network.
This resulted in the establishment of 9 infrastructure nodes representing 72 research organisations, covering the majority of Australia’s states, territories, and health researchers. These organisations will work together to deliver coherent data practices and coordinated data services at a national scale. ARDC is investing in the establishment of these nodes, as well as using its expertise and resources as a national infrastructure provider to develop and operate the federation services that bind the network together.
Who Will Benefit
Researchers need to access health research data for their analyses and to inform clinical guidelines and practices. Issues such as patient privacy as well as differing jurisdictional requirements and business practices can make providing that access difficult and sometimes impossible.
The goal of the infrastructure projects is to align and develop the ways in which data is managed to make it easier for data custodians and researchers to share data and collaborate.
HeSANDA nodes and administering organisations:
- Queensland (CSIRO)
- Northern Australia (Menzies School of Health Research)
- Sydney Health Partners – NHMRC Clinical Trials Centre (University of Sydney)
- WAHTN Clinical Trials and Data Management Centre (Curtin University)
- MACH Clinical Trials Consortium (University of Melbourne)
- Mental Health (Deakin University)
- Monash and Partners (Monash University)
- South Australia (South Australian Health and Medical Research Institute)
- National Cancer Cooperative Trials Groups (Australasian Leukaemia and Lymphoma Group).
The outcomes of these infrastructure development projects will be:
- community-defined national standards and practices for sharing clinical trials data
- national-scale systems for discovering and requesting data for health research and clinical guideline development.
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