A Data Governance Framework for Health Data Collected from Black Communities in Ontario (2021)

This report introduces the Engagement, Governance, Access, and Protection (EGAP) Framework, developed by Black health sector leaders and health equity experts in Ontario to guide the  collection, management, analysis, and use of race-based data from Black communities in ways that advance health equity.

Overview

"Ideas about health data governance may not readily provoke interest for those not already immersed in them. Of more immediate concern for many Black communities are daily lived  experiences of anti-Black racism, overt displays of violence, and discrimination within the health system. But data shapes all aspects of contemporary existence, informing policy development  and determining what the world around us looks. Our aim here is to address where these two issues meet, for anti-Black racism runs through the realm of health data, with consequences for  people’s lives. The Engagement, Governance, Access, and Protection (EGAP) Framework seeks to ensure that data from Black communities is properly collected, protected, and used to  promote equity."

Framework

"The Black Health Equity Working Group, made up of Black health sector leaders and health  equity experts, began meeting early in the pandemic to develop a governance framework for health  data collected from Black communities in Ontario. The objective was to address concerns from Black communities about the continued extraction of data from them without the return of  tangible benefits.

After creating a draft framework, the working  group carried out a series of stakeholder consultations with Black community members, researchers and academics, public health professionals,  and health system organizations in Ontario to gather critical feedback and inform revisions.

This report introduces the Engagement, Governance, Access, and Protection (EGAP) Framework, which outlines guiding principles in four areas of focus:

• 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."

This document was authored by the Black Health Equity Working Group (Paul Bailey, Corey Bernard, Ahmed Bayoumi, Andrew Boozary, Cynthia Damba, Sané Dube, Ryan Hinds, Kwame  McKenzie, Sume Ndumbe-Eyoh, Onye Nnorom, Camille Orridge, Andrew Pinto, Gideon Quaison, Angela Robertson, and Arjumand Siddiqi).