Researcher's perspectives and practices for sharing clinical data in international collaborative research

Abstract

Background: Data sharing is an important requirement for effective and efficient research, particularly biomedical research. It has however not yet been widely adopted by the clinical research community. In Uganda, little is known about what the researchers think about it. Literature shows that whereas most have knowledge on what data sharing is, their knowledge on data sharing policies, procedures and issues that could arise when data is shared, is limited.

Objective: This study explored researchers’ perspectives and practices of sharing clinical research data in international collaborative research.

Methods: This was an exploratory study conducted among principal investigators at Makerere University College of Health Science actively involved in international collaborative research. Data were collected using 14 in-depth interviews. And analysed using thematic content analysis, based on the grounded theory.

Results: Participants mentioned that data belonged to the institution where it was being collected and its sharing was beneficial because it gave them an opportunity to collaborate and disseminate study results across the world. The challenges faced during the sharing of clinical research data were lack of knowledge of what to or not to share, perceptions that data sharing was exploitative, limited access to data once shared, fear of the unknown, and no penalties against an investigator who abused data sharing. Ethical issues were associated with; failure to replace identifiable data, lack of transparency, and failure to include an informed consent process in the international sharing of data. Documentation of data sharing agreements (DSAs) before collaboration commenced, clearly stating confines of how data would be shared; setting own policies before conducting the study and signing off data sharing agreements (DSAs) by responsible people ensured fairness and equitable collaborative research.

Conclusion: A lack of a policy to guide researchers on the sharing of clinical data meant that they were unaware of what to or not to share during collaboration with foreign researchers. To prevent abuse of the rights of patients, there is a need for a policy to be shared before research commences to clarify what researchers are going to share with collaborators.