Engagement, governance, access, and protection (EGAP) framework
This resource is available in English and French
This report from the Black Health Equity Working Group introduces the Engagement, Governance, Access and Protection (EGAP) Framework. The tool aims to guide the collection, management, analysis and use of race-based data from Black communities in ways that advance health equity and dismantle anti-Black racism.
Anti-black racism contributes to higher risks of illness, reduced access to services and worse health outcomes for Black communities. The collection and use of race-based data, however, can help to challenge these health inequities.
The EGAP framework was founded on the desire for data sovereignty for Black communities. It was developed in response to concerns around Ontario’s mandate for race-based data collection during the COVID-19 pandemic.
The framework outlines four guiding principles for race-based data, relevant beyond the COVID-19 pandemic:
- Engagement: Genuine, cyclical, accessible consultation with communities regarding data collection management, analysis and use
- Governance: Community decision-making about engagement processes and data collection, management, analysis and use, achieved through the establishment of Community Governance Tables
- Access: The right of communities to access their collective data and to determine who else can access it, along with the capacity building required to enable this right
- Protection: The safeguarding of all individual rights and types of data, including identifiable, de-identified and anonymized data.
If best practices are followed, race-based data can:
- uncover inequities;
- develop policies and practices that address these inequities;
- monitor and evaluate effectiveness of interventions;
- hold authorities accountable for improving policies and practices; and
- ultimately eliminate structural racism.
Community involvement, as well as explicit focus on dismantling structural racism are key components.
Recommendations for implementation
The report maps the primary areas where action is needed to realize the EGAP Framework, including the following:
- Community engagement
- Community Governance tables
- Stakeholder engagement
- Community data management and data sharing agreements
- Data stewardship
Use this resource to
- Consider the importance of race-based data collection;
- Understand where to start if you are involved in the collection, management, analysis and use of race-based data for health purposes; and
- Apply the EGAP framework to collection and use of race-based data collection.
Black Health Equity Working Group. (2021). Engagement, governance, access, and protection (EGAP): A data governance framework for health data collected from Black communities. https://blackhealthequity.ca/wp-content/uploads/2021/03/Report_EGAP_framework.pdf
- Black experiences in Health Care Symposium: Bringing together community and health systems for improved health outcomes (2020)
- Measuring what counts in the midst of the COVID 19 pandemic: Equity indicators for public health (2020)
- Why collecting race-based during the coronavirus pandemic is a matter of life and death (2020)
- Let’s Talk: Racism and health equity (2018)