Abstract
Introduction
Data sharing has the potential to deliver significant benefits to scientific knowledge, clinical practice and public health. It also facilitates the identification of dodgy research. In recent years, funding bodies, journals and institutions have implemented policies that require the sharing of data. It has been noted that a lot of researchers say they will share the data, but don’t actually do so. This open access paper published in June 2023, looked at the barriers to sharing, what could alleviate them and what could encourage more sharing.
Objective
Propose a framework that states the main risks associated with data sharing, systematically present risk mitigation strategies and provide examples through a healthcare lens.
Methods
This framework was informed by critical aspects of both the Open Data Institute and the NIH’s 2023 Data Management and Sharing Policy plan guidelines.
Results
Through our examination of legal, technical, reputational and commercial categories, we find barriers to data sharing ranging from misinterpretation of General Data Privacy Rule to lack of technical personnel able to execute large data transfers. From this, we deduce that at numerous touchpoints, data sharing is presently too disincentivised to become the norm.
Conclusion
In order to move towards Open Data, we propose the creation of mechanisms for incentivisation, beginning with recentring data sharing on patient benefits, additional clauses in grant requirements and committees to encourage adherence to data reporting practices.
