# Determinants of Equitable Data Governance for African, Caribbean, and Black Communities in Health Research in High-Income Countries: Protocol for a Scoping Review

**Authors:** Josephine Etowa, Shamara Baidoobonso, Doris Kakuru, OmiSoore Dryden, Chinedu Oraka, Egbe Etowa, Peter Farrell, Sandra Mba, Akalewold Gebremeskel, Arone Wondwossen Fantaye

PMC · DOI: 10.2196/82403 · JMIR Research Protocols · 2026-02-13

## TL;DR

This study aims to understand how data governance can be made fairer for African, Caribbean, and Black communities in health research.

## Contribution

The study introduces a scoping review protocol to explore equitable data governance determinants in health research involving African, Caribbean, and Black communities.

## Key findings

- A scoping review protocol is outlined to identify determinants of equitable data governance for ACB communities.
- The review will use a thematic mapping process informed by critical race theory and community-based participatory research.
- The findings are expected to inform policy and community-led data initiatives.

## Abstract

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.

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.

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.

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.

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.

OSF Registries 10.17605/OSF.IO/Z82AY; https://osf.io/z82ay

PRR1-10.2196/82403

## Full-text entities

- **Genes:** NAA35 (N-alpha-acetyltransferase 35, NatC auxiliary subunit) [NCBI Gene 60560] {aka EGAP, MAK10, MAK10P, bA379P1.1}
- **Diseases:** OCAP (MESH:C536209), breast cancer (MESH:D001943), HIV (MESH:D015658), ACB (MESH:D007898), diabetes (MESH:D003920), COVID-19 (MESH:D000086382)
- **Chemicals:** Embase (-)
- **Species:** Homo sapiens (human, species) [taxon 9606]

## Full text

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## Figures

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## References

35 references — full list in the complete paper: https://tomesphere.com/paper/PMC12949400/full.md

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Source: https://tomesphere.com/paper/PMC12949400