Clinical trial data unlocked for research with new national platform

For the first time in Australia, researchers can find clinical trial data from multiple research institutions and request access to them through new platform Health Data Australia (HDA). 

HDA was launched on 18 July at the South Australian Health and Medical Research Institute (SAHMRI) in Adelaide with QCIF and the other key partners who contributed to its design. QCIF is a partner in the Queensland node of the Health Studies Australia National Data Asset (HeSANDA) network, the parent project of HDA.

HDA allows clinical trialists and data custodians to share clinical trial metadata according to specifications designed by the Australian clinical trials community and fulfil public funding data sharing requirements. The platform can then be used by researchers not involved in the clinical trials to find and request access to this data. 

QCIF Director of Data Science Dr Dominique (Dom) Gorse, the Project Co-Lead (alongside CSIRO’s Dr Hugo Leroux) and Technical Lead of the HeSANDA Queensland node, said: "Embracing the responsible reuse of sensitive data is a transformative step towards driving breakthroughs in medical research.

“HeSANDA and its Health Data Australia platform is leading the way in harnessing the collective potential of clinical trial data whilst ensuring its ethical utilisation. By unlocking the full potential of data-driven research, HDA will accelerate the benefits to public health,” said Dom.

The framework for sharing clinical trial metadata through HDA was co-designed by the Australian Research Data Commons (ARDC) and experts and representatives for the nine nodes of the HeSANDA network, which covers 72 health research organisations, health service operators and clinical trial networks from across Australia.  

ARDC initiated the HeSANDA program in 2020 to build national infrastructure to make it easier for researchers to find and request access to health research data. 

QCIF, CSIRO’s Australian e-Health Research Centre (AEHRC), and Health Translation Queensland (HTQ) lead HeSANDA’s Queensland node as a collaboration, led by a Steering Committee chaired by AEHRC CEO Dr David Hansen.

The QCIF team, including Senior Health Informatician Kathy Dallest and Software Engineer Diego Guillen, built the technical infrastructure of the node by deploying the Dataverse application, along with operational processes to enable the reuse of clinical trial data under the FAIR (Findable, Accessible, Interoperable and Reusable) data principles.  

A Digital Object Identifier (DOI) is minted via DataCite when the trial metadata meets the HeSANDA specifications and is subsequently published to the HDA platform for discoverability by national and international registers, increasing the visibility of the work of Queensland researchers.  

Queensland organisations may register their interest in publishing their data set metadata via QCIF’s online form.

While HeSANDA is focusing on making clinical trial data FAIR, ARDC is growing its digital research services for the medical and health research community. It aims to catalogue and share other types of health and medical data and provide secure data access for clinical trials via the People Research Data

Commons. 

This article was based on an ARDC article published on 17 July 2023. 

HeSANDA expansion project workshops (health cohort research) 

The next phase of ARDC’s HeSANDA program — the “Expansion Project,” with infrastructure developed next year — aims to extend support to health cohort studies and other health research areas.  

Following initial consultation with NHMRC, AHRA, PHRN, Cochrane Australia, ANZCTR, ACTA, Research Australia, Consumers Health Forum, and other key stakeholders, ARDC will hold a series of public consultation online workshops.  

The 1.5-hour workshops on 30 August and 27 September are open to anyone affiliated with Australian health cohort research or other health research communities.  

Please see ARDC’s website for more information about these workshops. 

Photo above: QCIF Director of Data Science Dr Dominique Gorse (10th from right) was at the launch of the Health Data Australia platform, alongside other HeSANDA node partners and the ARDC HeSANDA program staff. (Photo: Andy Steven, ARDC.)