The Health Studies Australian National Data Asset (HeSANDA) means researchers can now source, share and reuse data – leading to improvements in collaboration and greater opportunities to answer new research questions. Using HeSANDA can also lead to increased recognition for researchers and institutes, new partnerships and grants, and give projects a longer life.
HeSANDA received co-investment from the Australian Research Data Commons (ARDC), which is funded by the National Collaborative research Infrastructure Strategy (NCRIS).
It is a collaboration of nine HeSANDA nodes – including MACH – that represent more than 70 research organisations across Australia.
The MACH node is led by the Methods and Implementation Support for Clinical and Health Research (MISCH) Hub at the University of Melbourne, with Professor Julie Simpson as the project lead.
MISCH Clinical Trials Node Manager Katie Ozdowska says the national platform Health Data Australia is one of the key outputs from the HeSANDA program.
“Health Data Australia is an online catalogue of clinical trial metadata that researchers can browse and apply to the data custodian to be considered for secondary use of trial data.
“The catalogue holds only the metadata – not any identifiable participant-level data or the actual datasets. The researchers who created the data maintain control over the data and determine who can access the information.”
“There is great support for Health Data Australia to become the default and centralised system to access clinical trials data nationally.”
HeSANDA presents a collective opportunity to address some challenges with data sharing for secondary use and is already helping to build Australia’s data sharing capabilities. It is also a boon for researchers who need to meet funding body and journal publication requirements – particularly for publicly funded clinical trials where researchers need to make data available and adhere to FAIR data principles.
Ms Ozdowska (pictured left) said Phase 1 of HeSANDA had focussed on investigator-initiated and academic clinical trials. Phase 2 (2023-2028) is providing opportunities to consolidate capability for clinical trials, extend to other health study types such as cohort studies and deploy new capabilities such as secure access environments.
She says clinical trial participants could be gratified the ethical sharing and re-use of their data was contributing to more than one project.
Ms Ozdowska says sharing of data led to research organisations enjoying a higher profile and better reputation, increased productivity and enhanced research rigour.
“There is great support for Health Data Australia to become the default and centralised system to access clinical trials data nationally, and we’re now starting to see data access requests come through the system.
“The more researchers who contribute, the more robust and meaningful the catalogue is. There has been a considerable amount of oncology clinical trial records inputted from cancer researchers around the country. We’d love to build up the catalogue to really reflect the broad landscape of health research in Australia.”
If you’re a researcher who would like to contribute to the MACH node, please email [email protected]