How race-based data improve health equity & promote social justice
The rise of the Black Lives Matter movement in 2020 brought light to the inequities experienced by Black populations, including in the health sector. With the onset of a global pandemic, the need for evidence-informed, community-driven public health and policy solutions became even more stark, according to Dr. Kwame McKenzie, CEO of Wellesley Institute and Professor in the Department of Psychiatry at the University of Toronto. These dual crises highlighted the critical need for race-based data to deliver tailored health interventions. While data collection is key to finding evidence-based solutions, Dr. McKenzie continued, it’s only part of the story. “How do we use data to power equity, to power change? That’s what we’re interested in.”
This equity-focused approach is foundational to the Engagement, Governance, Access and Protection (EGAP) Framework, a framework born in the early pandemic to gather and govern comprehensive race-based health data across Canada. Led by Dr. McKenzie and other members of the Black Health Equity Working Group, the framework’s goal was to ensure that Black communities gain ownership over their own health data. It recognized the importance of this data in gaining an in-depth understanding of the specific health challenges faced by Black communities and other racialized groups in order to create targeted, effective health interventions. “Race-based data and sociodemographic data are the means, not the aim,” he explained. The aim is to have a data-driven quantification of what is happening in order to be able to identify disparities, and monitor and ensure transparency.
By understanding the unique health challenges faced by Black Canadians and other racialized groups, policymakers can implement targeted interventions that address the root causes of health disparities. This approach not only improves health outcomes but also promotes equity and social justice within healthcare systems. ~ Dr. Kwame McKenzie
Race-based data includes information on health outcomes, access to health care, and the social determinants of health, all stratified by race, and are essential for identifying health disparities that might otherwise remain hidden. By collecting and analyzing these data, health researchers can uncover trends that reveal inequities in health status. “We knew that rates of infection in UK and USA black populations were high but (during Covid) we didn’t know what was happening in Canada. We didn’t have the data to know whether the same high rates in Black populations were being seen in Canada.”
For Black communities, which have historically faced systemic racism, socio-economic disadvantages and barriers to equitable health care, the implications of having robust race-based health data are profound. “This lack of specific data on Black people’s health outcomes have often led to these issues being overlooked or inadequately addressed,” he added. However, by providing Black communities with the power to make decisions over this data, the health system will be empowered to change in transformative ways by gaining both comprehensive datasets and the trust of communities.
By convening discussions and facilitating research, Dr. McKenzie aims to change this paradigm by filling crucial gaps in knowledge and power sharing with communities.
Jemal Demeke, a researcher at Wellesley Institute, and a member of the Black Health Equity Working Group, emphasized the importance of inclusive and representative data to drive effective public health interventions and policy decisions. “We have to think about whether the data we are collecting actually reflects the ways that communities want to be represented. We need to ensure that the way we’re analyzing the data reflects community perspectives and needs. Without that approach, community trust will start to erode and we’ll see that the data gathered may not support data-informed, evidence-based decision making.”
While the adoption of EGAP is in the early stages across organizations and governments, with time required for data collection and implementation, Demeke says they will continue to build community trust through ongoing engagement and transparent decision-making. Looking ahead, he envisions a future where race-based data will improve health equity, “ensuring that health outcomes are not determined by one’s identity, where everyone has access to the services they need to achieve well-being.”
To learn more, watch Dr. McKenzie and Jemal Demeke’s presentation as part of HDRN Canada’s Big Ideas About Health Data Speaker Series