28 July 2022
National infrastructure to support the ethical sharing and reuse of health research data is a step closer, with the Health Studies Australian National Data Asset (HeSANDA) initiative now in its infrastructure development phase.
In 2021, the Australian Research Data Commons (ARDC) announced the nine initial nodes of the HeSANDA network, which includes a Queensland node. Health Translation Queensland partner, the CSIRO Australian e-Health Research Centre (AEHRC), leads the development of the HeSANDA Queensland node.
Health research studies generate a wealth of data, including information about the people participating in the research, their health and their response to therapies or interventions under trial. Data collected in one study is valuable to other studies. Before now, privacy concerns and the siloed effects of research groups and jurisdictions made sharing health data difficult. With collaboration underway across the state and country, this is set to change in the coming years.
This year, the HeSANDA Queensland node established its strategy, project plan, budget and governance and began progressing its work packages. The team is collaborating with the ARDC responsible for developing the national network and a range of related and enabling projects to support the development of coherent data practices, standards and services.
The HeSANDA Queensland node aims to curate and provide descriptions of clinical trials research data and documentation and make that information available to the HeSANDA national network (akin to a Queensland data catalogue). The team is also working with data owners and custodians to implement common data access arrangements, ultimately creating a standardised approach across the state.
For HeSANDA to work effectively, Queensland needs sustainable infrastructure – a platform that supports data sharing (as per the program design requirements), input from the nominated clinical trials, and the capacity, policies and processes to make data from future trials available.
In Queensland, AEHRC, HTQ, the Queensland Cyber Infrastructure Foundation, the clinical trials data holders, ARDC and other HeSANDA nodes will co-design the framework for metadata to be collated, normalised and published to national registers and made ‘discoverable’. The Queensland node will also provide a service for Queensland clinical researchers to request access to clinical trial data from the national network.
Ultimately, HeSANDA aims to increase the impact, integrity and efficiency of research, providing health benefits for all Australians. By creating a national asset from clinical trial data, HeSANDA will help to maximise public investment in health research across the country.
The HeSANDA Queensland node partners are:
The HeSANDA Queensland node project steering committee:
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