The AGITG is excited to be involved in a national project, the Australian Research Data Commons (ARDC), and the opportunities that the sharing of research data can hold for members and the wider research community. The ARDC, in conjunction with the health research community, is building the Health Studies Australian National Data Asset (HeSANDA).
Health research studies and clinical trials create a wealth of information about the participants in the research, their health and the interventions being studied. That data generated is valuable to more than just the original study; however, issues of patient privacy and the naturally siloed approaches of some research groups and government jurisdictions means that sharing data for these valuable purposes is complex and sometimes impossible.
HeSANDA aims to:
- bring together the health research community to establish national infrastructure to support the sharing and reuse of health research data.
- bring value to the research community by stimulating new ideas and enabling the data outputs of one study to become the inputs for another. The effect will stimulate new ideas and reduce resources through the reuse of existing data and identification of existing studies preventing duplication.
- increase research impact and integrity by supporting further research, meta-analysis, and clinical guideline development. This includes, but is not limited to, adopting a leading role in standardising both data governance frameworks (including participant consent) and the conventions and mechanisms that are adopted nationally for data sharing and secondary use.
The initial phase of the program (December 2021 – June 2023) will focus on building robust and coordinated national infrastructure to support the sharing and reuse of clinical trial metadata (from investigator-led studies).
Initially there are nine nodes, representing 72 health research organisations in Australia, including 18 universities, 10 medical research institutes, 19 health service operators, 16 clinical trial networks and nine other organisations. The Cancer Cooperative Trials Groups (CCTG) is one node, with the AGITG being one of the 14 CCTGs contributing to the project.
Nodes are contributing trial metadata to the HeSANDA platform, which will be searchable by secondary researchers. To access the data, researchers will be able to submit a request to the data custodian through the platform. Once a data sharing agreement is reached between the parties, the data is made available to the secondary researcher.
It is important to note that all trial data remains with the data custodian, until the data sharing agreement is reached, and no sensitive patient information will be directly available on the platform.