Building the national infrastructure for health research data sharing and collaboration.

HeSANDA Infrastructure Development is one of three major work streams in the Health Studies Australian National Data Asset (HeSANDA) program and will deliver the infrastructure to enable the creation of a national health data asset. HeSANDA Infrastructure Development is using a co-creation approach. ARDC is facilitating collaborative partnerships between research institutions, organisations, and other relevant stakeholders involved in clinical trials research.

Approach

Hesanda work plan timeline

We conducted initial consultations with the clinical trials research community, research participants, health consumers, and clinical trialists via HeSANDA’s Data Development and Culture and Policy streams. These consultations produced a set of principles, priorities, and recommendations for the development of HeSANDA infrastructure and a national data asset. Three development priorities were identified:

  1. Coherent Data Practices: Research community and stakeholder-defined data sharing practices for minimum information requirements, metadata design, data access, and ethics and consent.
  2. Coordinated Data Services: A distributed network of infrastructure nodes to supply clinical trials metadata and research outputs according to the Coherent Data Practices
  3. Federation Services: Interfaces, applications, and services to allow research and data discovery, data request and access, and additional functionality across the node network

HeSANDA infrastructure model

The initial infrastructure nodes for the HeSANDA network

In response to the development priorities, the ARDC released an open call for clusters of research organisations to develop the initial set of infrastructure nodes in the HeSANDA network (for details, please see the full RFP documentation and background document, and copies of the information session recording and slides).

This open call resulted in the establishment of 9 infrastructure nodes representing 72 research organisations with coverage of the majority of Australian states, territories, and health researchers.

The table below shows the successful node proposals and the lead organisations.

Node proposal titleLead organisation
Health Studies Australian National Data Asset: Queensland Node ProposalBrisbane Diamantina Health Partners (University of Queensland)
Northern Australian NodeMenzies School of Health Research
Sydney Health Partners led by NHMRC Clinical Trials Centre, at The University of SydneyUniversity of Sydney
WAHTN Clinical Trials and Data Management CentreCurtin University
MACH Clinical Trials ConsortiumUniversity of Melbourne
Mental HealthDeakin University
Monash and Partners HeSANDA NodeMonash University
SA HeSANDA NodeSouth Australian Health & Medical Research Institute (SAHMRI) the administering institution for Health Translation SA (HTSA)
National Cancer Cooperative Trials GroupsAustralasian Leukaemia and Lymphoma Group

 

View the announcement of the 9 infrastructure nodes for HeSANDA.

Next steps

From mid 2021 to mid 2023, ARDC will facilitate the co-design of the Coherent Data Practices, coinvest in the development of Coordinated Data Services across the node network, and test and deploy an initial set of Federation Services to complete the rollout of the HeSANDA infrastructure and national data asset.

For more information on the Design Phase, please see the webinar recording and slides.

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