JMIR Publications

ABSTRACT

Background:

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 decision making processes about their own health. Historically, data has been extracted from ACB communities without transparency, accountability, or genuine engagement. These inequitable practices have contributed to data systems that reinforce harm rather than promote equity in ACB communities. Equitable data governance, which promotes community ownership over data collection, access, and use, is increasingly recognized as a critical but under-researched determinant of health equity.

Objective:

This protocol describes the plans of a scoping review that aims 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 will follow the six-stage Arksey and O’Malley methodological framework, supplemented with updated guidance from the Joanna Briggs Institute. The searches are being conducted in Ovid Medline, Ovid Embase, EBSCO CINAHL, APA PsycInfo, and Scopus. Peer-reviewed articles will be considered, with no limits placed on study design, publication type, or date. Multiple reviewers will independently extract data using a standardized form. A three-phase thematic mapping process, theoretically informed by critical race theory, intersectionality, and community-based participatory research principles, will be conducted to analyse the data, generate themes and interpret the findings. The anticipated timeline for this proposed scoping review is December 2024 to February 2026.

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. Recently, 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. This next screening phase will assess eligibility against our inclusion criteria and is scheduled to occur between August and October 2025. The data extraction stage is scheduled to overlap and occur between October 2025-December 2025. The thematic mapping and stakeholder consultations are scheduled between December 2025 to February 2026. The final review and manuscript submission are expected by February 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” (EGAP) guidelines and support the development of 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 knowledge-sharing events. As the review relies solely on publicly available data, ethical approval is not required. Clinical Trial: A version of this protocol was registered to the Open Science Framework (OSF) registry: https://doi.org/10.17605/OSF.IO/Z82AY