The Australian Research Data Commons (ARDC) has developed the HeSANDA (Health Studies Australian National Data Asset) Initiative to build national infrastructure to support the sharing and reuse of health research data. The program seeks to accelerate research and innovation in the research community, ultimately providing benefits for the health of Australia’s population.

Co-designed by the health research community, the national data asset will be built from the outputs of health studies, initially focusing on investigator-initiated clinical trials as proof of concept.

The program’s three key priorities include:

Data Development: Establishing national conventions and standards for reporting and curation of data
Infrastructure: Building data systems and information technology to facilitate data discovery and sharing
Culture and Policy: Consulting with stakeholders on the co-design of the national data asset, and enabling policies and practices.

The project is currently in the Infrastructure Phase which will run until the end of 2022/mid 2023.

Nine nodes (clusters or research organisations), including the Queensland Node, have been established to support the infrastructure development of the HeSANDA initiative.

Priorities of the HeSANDA Queensland Node

The CSIRO Australian Centre for E-Health Research, with the support of Health Translation Queensland, is leading the Queensland Node, in collaboration with Queensland partners.

The Queensland Node’s focus is to establish systems, processes and relationships that enable FAIR principles for clinical trial data. The partners are working together to:

Develop a framework for metadata from Clinical Trial Data Holders (CTDH) to be collated, normalised and published to National registers and RDA for discoverability
Establish an orchestration service allowing prospective clinical researchers to request access to the clinical trial data
Define policies, processes and relationships to orchestrate and report outcomes on Access Requests.

HeSANDA Queensland Node Partner Organisations:

Governance

The Queensland HeSANDA Node Team reviews project performance under the guidance of the ARDC.

The Queensland Node Team includes:

David Hansen – Project Lead, Australian E-Health Research Centre
Dominique Gorse – Project Co-Lead and Technical Lead, Queensland Cyber Infrastructure Foundation
Sara Gottliebsen – Project Meeting Facilitator, Health Translation Queensland
Hugo Leroux – Project Manager and Technical Co-Lead, The Australian E-Health Research Centre
Jim Steel – Software Engineer, The Australian E-Health Research Centre
Clair Sullivan – Project Team Member, Queensland Health and University of Queensland
Gabor Mihala – Project Team Member, Griffith University
Jason Ferris – Project Team Member, University of Queensland
Jim Logopoulos – Project Team Member, University of the Sunshine Coast
Paul Scuffham – Project Team Member, Griffith University
Laura Robison – Project Team Member, University of Queensland/AKTN
Andrew Mallett – Project Team Member James Cook University/Tropical Australian Academic Health Centre
Rob Ware – Project Team Member, Griffith University
Gary Allen – Project Team Member, Griffith University
Nick Rossow – Project Team Member, Griffith University

Funding

The Queensland node of the HeSANDA project has received investment from ARDC. ARDC is funded by the Australian Government through the National Collaborative Research Infrastructure Strategy (NCRIS) as a response to the National Research Infrastructure Roadmap (initially 2018).

How can you contribute?

If you are a Principal Investigator who is interested in learning more about sharing your clinical trial data, please contact the Queensland Node Lead Dr David Hansen, CEO of AEHRC CSIRO, at research@healthtranslationqld.org.au

The HeSANDA Initiative