Breakthrough Service Enables Secondary Use of Clinical Trials Data for Research

Health Data Australia is a data discovery and request service developed by the Australian Research Data Commons (ARDC) in partnership with the health and medical research sector.

Launched in July, Health Data Australia is the result of ARDC’s Health Studies Australian National Data Asset (HeSANDA) program, which commenced in 2021.

The new service launched with metadata about 114 clinical trials from the 72 research organisations which partner in HeSANDA. SHP leads one of the nine HeSANDA nodes in Australia, in partnership with the University of Sydney’s NHMRC Clinical Trials Centre (CTC).

The work was originally supported by $300,000 per node in ARDC funding as well as in-kind contributions from node partners.

“A national data-sharing platform will support the production of high-quality, cost-effective health and medical research by reducing research duplication and helping to synchronise research efforts across the country,” says Professor Angela Webster, Director of Evidence Integration at the NHMRC CTC.

“This project will also help develop Australia’s data culture and enable meaningful integration with growing international pressure to maximise value from research data.”

The metadata about clinical trials available from Health Data Australia includes study protocols, data dictionaries, publications and dataset descriptions.

Secondary researchers can search the catalogue to identify trials that are likely to contain data of interest to their work and then submit a data access request to the relevant custodian.

If the request is approved in line with the node’s guidelines, both parties will enter into a data-sharing agreement to provide the researcher with access to the de-identified data in full.

“All Health Data Australia users will be bound by a set of shared standards around data access, security and storage,” says Talia Palacios, Project Manager for the HeSANDA Sydney Health Partners-CTC node.

“This process will create an unparalleled opportunity for researchers to access a wealth of data that may otherwise be out of reach or difficult to obtain.”

ARDC Program Manager for HeSANDA, Dr Kristan Kang, emphasises that the data remains with the owner at all times and is not stored in the Health Data Australia catalogue.

“Only the description of the data is held on the platform and the system allows the data owner to choose when and how to share data with another researcher,” he said.

Deputy CEO of the ARDC, Dr Adrian Burton, says Health Data Australia will “bring immense value to health research.”

“Health Data Australia is maximising the impact of past research and laying a foundation for future research to improve the health outcomes for Australia,” he said. “We thank our many partners and advisors of this unprecedented project, who shared their considerable expertise to co-design the national platform.”

To find out more about Health Data Australia, visit the catalogue and user guides.