Balancing protection of participants and other stakeholders with openness: African lessons from the MADIVA data sharing and access policy

Résumé fourni par la source

National and international data sharing in health research is critical for advancing scientific discovery and fostering collaborative partnerships. With growing technological advances and an increasing desire for open science, data sharing enables researchers to access diverse datasets to generate novel insights. Adopting robust policies is key to responsible data sharing, which fosters interdisciplinary collaboration, ensures ethical and legal compliance, implements transparency, and strengthens stakeholder trust. Collaboration is increasingly important for health research, and therefore, effective data sharing policies are indispensable in balancing competing interests that arise in the complex research environment. This paper shares insights from Multimorbidity in Africa: Digital Innovation, Visualisation, and Application (MADIVA), a project that explores multimorbidity in African populations. In addition to facing typical data sharing challenges, the hub confronts specific challenges prevalent in low- and middle-income settings. MADIVA's data access and sharing policy balances the competing demands of open science while safeguarding the interests of researchers and participants. This case study offers a framework for data sharing in collaborative health research across resource-constrained settings that can be adapted for use by others.

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