The Impact of Sharing Clinical Research Data: Insights from Sydney Health Partners and the NHMRC Clinical Trials Centre

In a world where health data drives medical innovation, the sharing and re-use of clinical data is more important than ever. However, patient privacy and a lack of standardisation often make the process complex or impossible. 

To tackle this issue, ARDC has developed the Health Studies Australian National Data Asset (HeSANDA), a program that is creating national infrastructure that enables researchers to readily share and access data from health studies and clinical trials. A component of HeSANDA is Health Data Australia, an online catalogue launched in 2023 that contains descriptions of Australian clinical trials data and allows researchers to request access to this data.  

The ARDC joined an online webinar co-hosted with Sydney Health Partners and the National Health and Medical Research Council (NHMRC) Clinical Trials Centre to raise awareness about HeSANDA and Health Data Australia. The May 2024 webinar, ‘Sharing is Caring: Enabling Sharing of Research Data’ had approximately 70 participants from government, private industry, and research sectors.  

The Benefits of Data Sharing

The establishment of Health Data Australia is in response to the global shift towards data sharing to improve the integrity, productivity, and impact of clinical data.

Professor Angela Webster, Director of Evidence Integration at the NHMRC Clinical Trials Centre, explained that Health Data Australia provides researchers with a means of finding and accessing clinical data.

“We are focusing on curating and making data discoverable. We are making the clinical trial data more visible and creating an infrastructure from which requests to access the data can be made easily. Sharing of the data is up to the data custodians. Having a trial listed on Health Data Australia does not commit you to sharing your clinical trial data,” said Angela.

“If you share data, you can extend the life and the visibility of your research and facilitate new collaborations. There are many more uses for data, beyond answering the specific focus question that the data was originally collected for.”

The value of using secondary clinical data was highlighted by researchers from the NHMRC Clinical Trials Centre, who presented real-world case studies and discussed the impact of their work on changing clinical guidelines. 

Using Secondary Data to Drive Real-World Impact

Senior Research Fellow, Dr Sally Lord, uses secondary clinical trial data in her epidemiological research.

Sally’s research examines the accuracy of blood tests compared to CT scans for monitoring ovarian cancer progression. She and her collaborators used clinical trial data from a 2017 study involving blood tests and CT scans. 

By re-analysing this data, they discovered that almost half of the ovarian cancer patients with a negative blood test still showed progression of the cancer in their CT imaging; findings that will help to inform clinical guidelines and future research to contribute to better health outcomes for ovarian cancer patients.

“From a researcher’s perspective: pre-HeSANDA, the broad value of data beyond primary treatment comparisons was well recognised but underused. Now, with HeSANDA facilitating data sharing, I’m looking forward to broader, more cross-disciplinary collaborations for more and higher-impact use,” said Sally.

Dr Anna Lene Seidler, Senior Research Fellow from the NHMRC Clinical Trials Centre, demonstrated the impact of sharing clinical trial data for her research into umbilical cord clamping in premature babies. 

Historically, premature babies had their umbilical cords quickly clamped. However, using secondary data  her team could show that delaying this clamping improves survival rates. Over 100 randomised controlled trials were performed to identify the best conditions for umbilical cord clamping at preterm birth, but the data were often diverse, unpublished, not reported, or not comparable. So, no conclusive answers could be determined.

Lene and her collaborators collated individual participant data from over 6,000 babies across more than 50 trials. Waiting to clamp the umbilical cord reduced death in premature babies by around 30%. Waiting longer to clamp the umbilical cords led to even larger reductions in mortality. 

These findings led to changes in international guidelines and clinical practice on umbilical cord clamping. 

Dr Talia Palacios, Sydney Node project manager, is the recipient of the first data sharing request through Health Data Australia, and spoke about data sharing from the perspective of a data custodian.

“The process for secondary researchers to request access, and for approvers to agree to share their data, involves 6 stages: find, enquire, request, negotiate, agree and access.”   

These steps are summarised in resources to help researchers and data custodians navigate this process, available on the Sydney Health Partners Website.

Based on these successful applications, the ARDC is working with partners to extend Health Data Australia beyond clinical trials to include data from cohort studies, clinical registries, and other study types. This will help maximise the impact of health research and improve health outcomes for all Australians. This effort is part of the ARDC’s People Research Data Commons, which is establishing national-scale research infrastructure for health and medical research.

Watch the webinar recording:

Find and share clinical trial data on Health Data Australia.

The ARDC is enabled by the National Collaborative Research Infrastructure Strategy (NCRIS) to support national digital research infrastructure for Australian researchers.