Each year Australia invests a large amount of money in clinical trials, cohort studies and registries. Once the research has been completed, these data sets largely lay dormant, inaccessible and isolated with significant untapped value for a healthier Australia.
The clinical studies research community has identified the need for a more deliberate and concerted approach to data storage, enhanced access, standards, as well as analysis, sharing and reward systems. All this needs to be accomplished while protecting privacy and positively contributing to the health research community.
In response, the Australian Research Data Commons (ARDC) and the Commonwealth Scientific and Industrial Research Organisation (CSIRO) convened a workshop in March 2019 looking at ways to unlock the value of publicly funded clinical studies data.
“This engagement with the health and medical research community aims to develop a national framework for capturing value from publicly funded clinical research data, guide further infrastructure, research and community activities,” said Kate LeMay, an ARDC Senior Research Data Specialist who helped convene the workshop.
With a range of health and medical research sector leaders in participation, the workshop addressed topics such as: NCRIS and the health domain; the recent history of clinical trials data requirements; legislative changes around data sharing; attitudes to data sharing in the medical sector, and exemplars of data sharing and reuse.
Important themes emerged during the workshop, including:
- Governance, ethics and privacy are vital considerations for sharing and reuse of health and medical data.
- Skills, culture, and support are needed to enable data sharing within the health and medical research community.
- Building and maintaining trust and social licence for reuse of health and medical data is essential.
The event provided an important opportunity for the ARDC and CSIRO to engage with the health and medical research sector to explore the value, enablers and barriers to sharing and reuse of publicly funded clinical research data. CSIRO and ARDC plan further activity in this area over the coming months.
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