Unlocking the vast potential of data sharing  

Enabling data sharing for completed clinical trials has the potential to greatly impact the lives of community members and research participants in a number of ways. One key way is by improving the efficiency and effectiveness of future clinical trials, which can ultimately lead to the development of better treatments and therapies for various health conditions. 

For example, let’s consider a completed clinical trial that investigated a new drug for a rare disease. If the data from this trial are shared with other researchers and clinicians, they may be able to build upon the existing knowledge and potentially identify new uses for the drug or new avenues for research. This could lead to more targeted and effective treatments for the disease, ultimately improving the quality of life for patients who suffer from it.   

In addition, enabling data sharing for completed clinical trials can also help to prevent redundant or unnecessary research. If researchers can access information about past trials and their results, they can better understand what has already been done and what still needs to be explored.   

Finally, making data from completed clinical trials more accessible to the broader research community can also increase transparency and accountability in the research process. This can help to build trust and confidence among research participants and the broader community, which can lead to more participation in clinical trials. 

The HeSANDA initiative has already shifted the culture and attitudes towards the sharing of data and has helped push the open science framework to the forefront of clinical triallists’ minds.  

Reusing health data will accelerate research and innovation, as well as improving the wellbeing of people in Australia and across the world. Recognising this gap, the Australian Research Data Commons (ARDC) launched the Health Studies Australian National Data Asset (HeSANDA) initiative.  

The main goal of the HeSANDA initiative is to enable the creation of a national health data asset that supports sharing and reuse of health research data. The HeSANDA Mental Health Node is one of the nine ‘nodes’ supported nationally by the ARDC. The Mental Health Node in collaboration with the Secure Health Data and Biosample platform (SHeBa) aims to maximise the outputs and impact of already collected health research data. This is possible because SHeBa is a state-of-the-art platform for discovering, combining, accessing and analysing data, and bio samples collected by health services. 

In recent years, there has been a growing recognition that sharing data and research findings more openly can accelerate scientific progress, reduce duplication of effort, and enhance the reproducibility and reliability of research findings. This trend has been particularly pronounced in the field of clinical research, where there is a strong imperative to develop new treatments and therapies for a wide range of health conditions. 

However, a number of challenges have hindered progress in this area. One is the lack of standardisation and consistency in the way clinical trial data are collected, organised and reported. This can make it difficult for researchers to compare and analyse data from different trials.   

In response to these challenges, there have been efforts to develop standards for clinical trial data sharing and metadata management. For example, the Clinical Data Interchange Standards Consortium (CDISC) has developed a set of standards for clinical trial data, including metadata, that aims to improve interoperability and facilitate data sharing.