Evidence map›Paper›PMID 41687096›Full record

ArticleJMIR research protocols2026

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

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

Abstract read
In one paragraph

Article in JMIR research protocols, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

1 citing paper in PubMed.

  1. Article
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

10 authors.

Josephine EtowaSchool of Nursing, Faculty of Health Sciences, University of Ottawa, Ottawa, ON, Canada.ORCID 0000-0003-2019-7958
Shamara BaidoobonsoChief Public Health Office, Government of Prince Edward Island, Charlottetown, PE, Canada.ORCID 0000-0002-6516-7077
Doris KakuruSchool of Child and Youth Care, Faculty of Education, University of Victoria, Victoria, BC, Canada.ORCID 0000-0003-1046-7678
OmiSoore DrydenFaculty of Medicine, Dalhousie University, Halifax, NS, Canada.ORCID 0000-0001-7166-8268
Chinedu OrakaCanadians of African Descent Health Organization (CADHO), Ottawa, ON, Canada.ORCID 0000-0002-3035-899X
Egbe EtowaSchool of Nursing, Toronto Metropolitan University, Toronto, ON, Canada.ORCID 0000-0003-0982-755X
Peter FarrellSchool of Nursing, Faculty of Health Sciences, University of Ottawa, Ottawa, ON, Canada.ORCID 0000-0001-5119-0527
Sandra MbaSchool of Nursing, Faculty of Health Sciences, University of Ottawa, Ottawa, ON, Canada.ORCID 0000-0001-9925-0787
Akalewold GebremeskelSchool of Nursing, Faculty of Health Sciences, University of Ottawa, Ottawa, ON, Canada.ORCID 0000-0001-5141-8018
Arone Wondwossen FantayeSchool of Nursing, Faculty of Health Sciences, University of Ottawa, Ottawa, ON, Canada.ORCID 0000-0002-7915-5966

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundAfrican, 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.

objectiveThis 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.

methodsThe 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.

resultsThe 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.

conclusionsThis 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.

trial registrationOSF Registries 10.17605/OSF.IO/Z82AY; https://osf.io/z82ay. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/82403.

Indexed as

Data ManagementDeveloped CountriesAfrican PeopleBlack PeopleCaribbean PeopleCaribbean RegionHumansResearch DesignScoping Reviews as TopicAfricanBlack communityCaribbeandata governancedata ownershipscoping review protocol

Identifiers

PMID41687096
PMCPMC12949400

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.