/ Sociodemographic data and data justice

Engagement, Governance, Access and Protection (EGAP) Implementation Guide

• Jemal Demeke, Brenda Roche, Camille Orridge and Kwame McKenzie
Black man wearing glasses speaks to a group of people.

Black communities in Ontario experience worse health outcomes and face greater disparities in accessing care.

That is why in 2021, the Black Health Equity Working Group developed the Engagement, Governance, Access and Protection (EGAP) Framework as a model for promoting community governance of how sociodemographic data is collected and used. The goal of EGAP is to enable data sovereignty: the right of communities to govern the collection, management, analysis and use of their data in order to promote better health outcomes.

Wellesley Institute’s EGAP Implementation Guide was developed to help groups and organizations through the process of implementing the EGAP framework. It includes 10 case examples from early adopters

“From my own experience over the years, it’s a start with a coalition of the willing,” said one early adopter.

We are grateful to Ontario Health Toronto and LAMP Community Health Centre, who provided important input and support during the development of the Implementation Guide.

EGAP Implementation GuideDownload
EGAP Implementation Guide DiagramDownload
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Jemal Demeke

Jemal Demeke

Jemal Demeke is a researcher at Wellesley Institute. He has consistently uses his community organizing experience to inform his public health research approaches. His research spans infectious disease epidemiology, implementation science, and equitable health interventions. African, Caribbean and Black communities have a continued presence in his professional focus. He has founded equity initiatives in large organizations, led workshops for healthcare providers, and built relationships between community stakeholders and health agencies. His work at Wellesley Institute leverages these experiences to inform policy change for racialized communities across Canada.

Brenda Roche

Brenda Roche

Dr. Brenda Roche is Director of Research at the Wellesley Institute. She was a Post-Doctoral Research Fellow in Anthropology and Health at the Gender, Violence and Health Centre of the London School of Hygiene and Tropical Medicine. She comes with academic and community-based research experience exploring social and health issues in urban settings, including homelessness, sexual health, violence and psychological trauma and distress. Her doctorate, through the London School of Hygiene and Tropical Medicine, examined discourses on trauma that operate within the context of refugee resettlement, and how these influence health and social care practices for women (and their families) seeking political asylum in the United Kingdom.

Camille Orridge

Camille Orridge is a Senior Fellow at Wellesley Institute. Previously, while at TCLHIN, Camille made health equity an increasing priority. Some of her achievements include launching Language Services Toronto, a telephone interpretation service for non-English speaking patients of Toronto’s hospitals that markedly improved aspects of access to Toronto’s hospitals. Her efforts on the Resource Matching and Referral Program and the Integrated Client Care Project that patients receive timely care, and the right care, and receive necessary supports to remain in the community.

Kwame McKenzie

Kwame McKenzie

Dr. Kwame McKenzie is CEO of Wellesley Institute, which works in research and policy to improve health and health equity in the Greater Toronto Area. A practicing psychiatrist, he also holds positions as a full Professor at the University of Toronto and as the Director of Health Equity at the Centre for Addiction and Mental Health (CAMH). As an international expert on the social causes of illness and the development of equitable social policy and health systems, Dr. McKenzie has advised health, housing, education and social services ministers in Canada and the U.K. and has authored more than 280 peer reviewed papers and six books. He is a member of the National Advisory Council on Poverty, and recently co-chaired Canada’s Expert Task Force on Substance Use. He has also worked as a consultant to the World Health Organization. Dr. McKenzie has been a columnist for The Guardian and The Times and a presenter for BBC Radio, and he is regularly published in the Toronto Star.