Determinants of equitable data governance for African, Caribbean, and Black communities in health research in high income countries: Protocol for a scoping review

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dc.contributor.authorEtowa, Josephine
dc.contributor.authorBaidoobonso, Shamara
dc.contributor.authorKakuru, Doris
dc.contributor.authorDryden, OmiSoore
dc.contributor.authorOraka, Chinedu
dc.contributor.authorEtowa, Egbe
dc.contributor.authorFarrell, Peter
dc.contributor.authorMba, Sandra
dc.contributor.authorGebremeskel, Akalewold
dc.contributor.authorFantaye, Arone Wondwossen
dc.date.accessioned2026-05-07T17:31:17Z
dc.date.available2026-05-07T17:31:17Z
dc.date.issued2026
dc.description.abstractBackground: African, Caribbean, and Black (ACB) communities in high-income countries continue to experience persistent health inequities, driven by systemic anti-Black racism, socioeconomic disadvantage, and exclusion from health decision-making. Historically, data have been extracted from ACB communities without transparency, accountability, or community ownership. These inequitable practices have produced data systems that reinforce harm rather than promote equity. Equitable data governance, which promotes community ownership over data collection, access, and use, is increasingly recognized as a critical but underresearched determinant of health equity. Objective: This protocol outlines the methodology of a scoping review to identify and synthesize evidence on the determinants of equitable data governance in health research involving ACB communities in high-income countries. Methods: The review follows the 6-stage Arksey and O’Malley methodological framework, supplemented with updated guidance from the Joanna Briggs Institute. The searches were conducted in the Ovid MEDLINE, Ovid Embase, EBSCO CINAHL, APA PsycInfo, and Scopus databases. Peer-reviewed articles are considered, with no limits placed on study design, publication type, or date. Multiple reviewers will independently extract data by using a standardized form. A 3-phase thematic mapping process, conceptually informed by critical race theory, intersectionality, and community-based participatory research principles, will be conducted to analyze the data, generate themes, and interpret findings. Results: The final comprehensive database searches were completed on December 17, 2024. The search strategy targeted literature on data management, governance, sharing, security, and ethical principles in relation to ACB populations in high-income countries. A total of 4365 records were screened at the title and abstract level, after deduplication, of which 247 studies were deemed potentially relevant and advanced to full-text screening. Following full-text screening and reference list searching a total of 15 articles were deemed eligible for analysis. The data extraction stage is scheduled to overlap and occur between November 2025 and February 2026. The thematic mapping and stakeholder consultations processes are scheduled between December 2025 and February 2026. The final review and manuscript submission are expected by March 2026, with dissemination activities planned for mid-2026. Conclusions: This review will synthesize existing information on key pillars, barriers, facilitators, promising data governance policies and practices, and recommendations relevant to ACB communities. The findings may inform the expansion of Ontario’s Engagement, Governance, Access, and Protection guidelines and support tailored research and national data governance frameworks. The review is expected to contribute to policy, research, and community-led data initiatives. Dissemination will occur through academic publications, conferences, and community-based knowledge-sharing events. As the review relies solely on publicly available data, ethics approval is not required.
dc.description.reviewstatusReviewed
dc.description.scholarlevelFaculty
dc.description.sponsorshipThis project is funded by the Social Sciences and Humanities Research Council (grant 936-2021-00859).
dc.identifier.citationEtowa, J., Baidoobonso, S., Kakuru, D., Dryden, O., Oraka, C., Etowa, E., Farrell, P., Mba, S., Gebremeskel, A., & Fantaye, A. W. (2025). Determinants of equitable data governance for African, Caribbean, and Black communities in health research in high-income countries: Protocol for a scoping review. JMIR Research Protocols, 15, e82403. https://doi.org/10.2196/82403
dc.identifier.urihttps://doi.org/10.2196/82403
dc.identifier.urihttps://hdl.handle.net/1828/23832
dc.language.isoen
dc.publisherJMIR Research Protocols
dc.rightsCC BY
dc.rights.urihttps://creativecommons.org/licenses/by/4.0/
dc.subjectAfrican
dc.subjectCaribbean
dc.subjectBlack community
dc.subjectdata governance
dc.subjectdata ownership
dc.subjectscoping review protocol
dc.subjectSexual and Reproductive Health and Rights (SRHR) Aspiration Research Cluster
dc.subject.departmentSchool of Child and Youth Care
dc.titleDeterminants of equitable data governance for African, Caribbean, and Black communities in health research in high income countries: Protocol for a scoping review
dc.typeArticle

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