Evidence map›Paper›PMID 41399304›Full record

ArticleGlobal health action2025

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

Daphine Tinashe Nyachowe, Victoria Bronstein, Helen Robertson, Scott Hazelhurst, Jillian Gardner, Michele Ramsay, Patrick Opiyo Owili, Michael Klipin, Kerry Glover, Gershim Asiki and 10 more

Abstract read
In one paragraph

Article in Global health action, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

20 authors.

Daphine Tinashe NyachoweSydney Brenner Institute for Molecular Bioscience, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa.ORCID 0000-0003-2544-804X
Victoria BronsteinSchool of Law, University of the Witwatersrand, Johannesburg, South Africa.ORCID 0000-0002-5542-5466
Helen RobertsonSchool of Computer Science and Applied Mathematics, University of the Witwatersrand, Johannesburg, South Africa.ORCID 0000-0002-4135-0379
Scott HazelhurstSydney Brenner Institute for Molecular Bioscience, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa.ORCID 0000-0002-0581-149X
Jillian GardnerSteve Biko Centre for Bioethics, School of Clinical Medicine, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa.ORCID 0000-0002-0549-9117
Michele RamsaySydney Brenner Institute for Molecular Bioscience, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa.ORCID 0000-0002-4156-4801
Patrick Opiyo OwiliAfrican Population and Health Research Center (APHRC), Nairobi, Kenya.ORCID 0000-0002-9417-8947
Michael KlipinFaculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa.ORCID 0000-0003-0269-9161
Kerry GloverSydney Brenner Institute for Molecular Bioscience, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa.ORCID 0000-0002-3778-2611
Gershim AsikiAfrican Population and Health Research Center (APHRC), Nairobi, Kenya.ORCID 0000-0002-9966-1153
Henry Owoko OderoAfrican Population and Health Research Center (APHRC), Nairobi, Kenya.ORCID 0000-0002-3678-4332
Phyllis MungaiAfrican Population and Health Research Center (APHRC), Nairobi, Kenya.ORCID 0009-0001-3539-9416
Diana AwuorAfrican Population and Health Research Center (APHRC), Nairobi, Kenya.ORCID 0000-0001-9202-1922
Samuel IddiAfrican Population and Health Research Center (APHRC), Nairobi, Kenya.ORCID 0000-0002-2366-2774
Isaac KisianganiAfrican Population and Health Research Center (APHRC), Nairobi, Kenya.ORCID 0000-0002-1107-4334
Daniel Maina NderituAfrican Population and Health Research Center (APHRC), Nairobi, Kenya.ORCID 0000-0001-9800-2431
Nkosinathi MasilelaMRC/Wits Rural Public Health and Health Transitions Research Unit, University of the Witwatersrand, Johannesburg, South Africa.ORCID 0000-0002-4718-9336
Daniel Ohene-KwofieSchool of Electrical and Information Engineering, Faculty of Engineering and the Built Environment, University of the Witwatersrand, Johannesburg, South Africa.ORCID 0000-0001-7107-9498
Faith KimongoMRC/Wits Rural Public Health and Health Transitions Research Unit, University of the Witwatersrand, Johannesburg, South Africa.ORCID 0009-0002-7730-6246
as members of the MADIVA Research Hub and the DS- I Africa Consortium

Funding

MADIVA (Multimorbidity in Africa: Digital innovation, visualisation and application)U54TW012077 · FIC · WITS HEALTH CONSORTIUM (PTY), LTD · PI Scott Hazelhurst, Stephen Tollman · 2021 to 2026
$6.9M
FIC NIH HHS U54 TW012077
6 · The paper itself

Abstract

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.

Indexed as

Access to InformationBiomedical ResearchInformation DisseminationStakeholder ParticipationAfricaCooperative BehaviorHealth PolicyHumansInternational Cooperationdata sharingdata sharing policiesLMICsmultimorbiditystakeholders

Identifiers

PMID41399304
PMCPMC12710273

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.