Abstract:
The proposed panel discussion will focus on best practices for race-based data (RBD) collection for African, Caribbean and Black Canadians (ACB) and how these practices can be used to develop an RBD framework to dismantle and eliminate structural racism, and improve health outcomes for this vulnerable population.

Summary of Conversations

The discussion centered on data governance and its impact on marginalized communities, particularly African, Caribbean, and Black (ACB) populations in Canada. It highlighted the importance of addressing health inequities through improved data governance frameworks, drawing inspiration from First Nations’ principles to ensure community ownership, control, access, and protection of data. The conversation underscored the historical context of anti-Black racism and its influence on data collection and analysis. Speakers emphasized the need for community involvement in research processes from start to finish, to move from data extraction to targeted interventions that foster resilience, agency, and overall well-being.

Take Away Messages/ Current Status of Challenges

Here are the take away messages:

• Systemic issues and historical data extraction have led to mistrust within ACB communities regarding data utilization.
• Improper use of race-based data perpetuates stigmas and stereotypes, hindering meaningful interventions.
• There’s a lack of identification of health inequities within institutions, impeding the development of sustainable solutions.
• Complex research methods and unclear partnership decision-making protocols deter ACB community engagement.
• Community members raise concerns about data usage, access, and collection methods.
• Current data governance practices are varied, resulting in siloed approaches across sectors.
• Data ownership and governance are central issues in health research, particularly highlighted by the pandemic.

Recommendations/Next Steps

Here are the recommendations:

• Establish a national race-based data framework with concrete guidelines for data collection across multiple sectors.
• Develop research guidelines for knowledge mobilization frameworks to effectively share research findings.
• Foster transparent and mutually beneficial relationships among researchers, community partners, and institutions.
• Establish clear guidelines for data sharing that directly benefit the community.
• Utilize an equity lens throughout the data life cycle, ensuring community control and accountability.
• Improve policies to dismantle anti-Black racism by identifying and addressing ACB health inequities.
• Adopt best practices for data governance, including community engagement, co-creation of research design, and smart data utilization validation.
• Expand the E gap framework to create standardized tools and steps for collecting race-based data.