The Kona Project: A Community-Led Approach to Developing a Black Health Equity Research Agenda with and for Black Communities

Background and Purpose: Black health inequities continue to exist, with anti-Black racism serving as a fundamental driver of these disparities. Although Canada’s universal healthcare system positions the country well to address inequities in access to health services, it is not structured to systematically monitor, assess, or eliminate the disparities faced by Black communities. There is a critical lack of national research focused on improving the health of Black Canadians, compounded by national frameworks for measuring health outcomes that fail to capture the intricacies of Black community experiences within the Canadian healthcare system.

This study established a Black community-informed research agenda aimed at advancing population-level health system solutions and moving beyond mere descriptive studies of Black health disparities. The Kona project addresses gaps in existing research and knowledge, providing a foundation for tracking progress and action toward achieving health equity for Black Canadians. This agenda promotes a comprehensive and culturally tailored approach to addressing Black health inequities at the systemic level.

Methods: This study employed a qualitative research approach. Fifteen in-depth key stakeholder interviews and twenty-one focus groups with Black community stakeholders were conducted to identify key elements essential to developing a Black health equity research agenda. Focus groups were held across various cities in Ontario (11), Nova Scotia (2), Alberta (2), British Columbia (1), and the Atlantic provinces (1) to ensure regional representation. Additional focus groups were organized around populations facing heightened marginalization within Black communities, including Youth (2), Sexual and Gender Minorities (1), and Francophone participants (1). Participants were recruited through partnerships with Black-led or Black-serving organizations across the country.

Guided by a participatory action research approach and grounded in critical social science and emancipatory research paradigms, the study followed an iterative process of data collection and analysis. Interviews were transcribed verbatim, and a team-based inductive analytical approach was used to code and thematically analyze the data using ATLAS.ti software.

Results: Primary health concerns raised by participants included improved access to healthcare services which might be enhanced by more Black and LGBTQ+ representation, prioritizing mental health, more information about chronic conditions and reproductive health, greater capacity for preventative healthcare for conditions which disproportionately impact Black people, anti-Black racism, a focus on community health challenges such as violence, and the importance of understanding the cultural and spiritual perspectives of Black people in Canada in order to provide more culturally responsive and empathetic care. A central call to researchers engaging with Black communities was to ensure that research leads to actionable outcomes, particularly through collaboration with community organizations to implement culturally tailored and relevant services.

Conclusions and Implications: The proposed research agenda will guide health research priorities, policy advocacy, and interventions that address the needs of Black Canadian communities by being directly informed by and relevant to their lived realities. Most importantly, this study highlights the importance of Black community members being involved at every stage of the research process; from identifying a project focus to dissemination, researchers must be accountable to Black communities above all.