TY - JOUR
T1 - Balancing protection of participants and other stakeholders with openness
T2 - African lessons from the MADIVA data sharing and access policy
AU - as members of the MADIVA Research Hub and the DS- I Africa Consortium
AU - Nyachowe, Daphine Tinashe
AU - Bronstein, Victoria
AU - Robertson, Helen
AU - Hazelhurst, Scott
AU - Gardner, Jillian
AU - Ramsay, Michele
AU - Owili, Patrick Opiyo
AU - Klipin, Michael
AU - Glover, Kerry
AU - Asiki, Gershim
AU - Owoko Odero, Henry
AU - Mungai, Phyllis
AU - Awuor, Diana
AU - Iddi, Samuel
AU - Kisiangani, Isaac
AU - Nderitu, Daniel Maina
AU - Masilela, Nkosinathi
AU - Ohene-Kwofie, Daniel
AU - Kimongo, Faith
N1 - Publisher Copyright:
© 2025 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
PY - 2025
Y1 - 2025
N2 - 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.
AB - 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.
KW - LMICs
KW - data sharing
KW - data sharing policies
KW - multimorbidity
KW - stakeholders
UR - https://www.scopus.com/pages/publications/105024983785
U2 - 10.1080/16549716.2025.2590307
DO - 10.1080/16549716.2025.2590307
M3 - Article
C2 - 41399304
AN - SCOPUS:105024983785
SN - 1654-9716
VL - 18
JO - Global Health Action
JF - Global Health Action
IS - 1
M1 - 2590307
ER -