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Wellesley Institute works in research and policy to improve health and health equity in the GTA through action on the social determinants of health.

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Consensus Statement on Race-Based Data for Health

Powering equity logo next to the Wellesley Institute logo.

March 18, 2025

In May 2024, more than 140 representatives from across the country attended Wellesley Institute’s Powering Equity: Canada’s first summit on race-based data for health with the aim of advancing the collection, use and governance of race-based data to improve the health of racialized populations. This consensus statement reflects a collective message from the summit.

Consensus Statement

Organizations and governments nationwide should strengthen capacity for the collection, use and governance of race-based data to address inequities and advance health.

These organizations and governments should provide the resources needed for long-term and sustainable progress towards health equity, because the collection of data is only a means to an end.

All levels of the healthcare system – from health authorities to service providers – must collaborate in their efforts to collect, use and govern race-based data to maximize effectiveness. Each organization must recognize their own distinct roles and clearly identify their accountabilities, actions and timelines related to the processes, practices and policies for this data.

Community governance must be a core component of this work, following guidance such as the Engagement, Governance, Access and Protections (EGAP) framework. Clear definitions of “community” must be developed in all efforts. Community engagement must be responsive to unique cultural contexts and be maintained at each stage of the efforts. Community governance must be a core component of this work,

Communities must be supported in accessing their collective health data, determining who else can access it, and ensuring it is used for their benefit. This means engaging with communities before collection, clearly defining the purpose of collection, ensuring proper collection methods, and linking data to actionable outcomes. It must be a priority to develop infrastructures and address issues that are most important to these communities.

Those committed to this consensus statement will continue to learn from one another in order to accelerate the rate at which we power equity.

Background

Canadian healthcare institutions have rarely collected data about the race or ethnicity of the people they serve. This collection is commonplace in countries such as the United States and the United Kingdom and is considered fundamental for developing fair and effective health systems and social policy and for responding to community needs.

Important waves of change are now underway in Canada. Stakeholders across the country are increasingly collecting race-based data so they can understand the differences in health and healthcare between racialized groups and promote health.

As health innovations continue to emerge, having accurate data is more crucial than ever. Historically, these innovations have often widened disparities among people. Without reliable data, it is challenging to determine whether these innovations are promoting equity or inadvertently worsening health outcomes in Canada. Data is essential to monitoring impact and to making necessary adjustments if things are not going as planned.

With momentum building, the next step in harnessing the full potential of race-based data for advancing health equity is to create a systematic, coordinated, Canada-wide approach. A consensus statement on how race-based data is collected, used and governed to power health equity is an important step towards developing an approach which optimizes the benefits for racialized populations.

We recognize that First Nations, Métis and Inuit people could benefit from improvements in the collection, use and governance of data to promote health equity. We believe a specific consensus statement should be in place because of the nation-to-nation responsibilities that Canada has to Indigenous Peoples.

Core Evidence

This consensus statement is built on a core evidence base. Health equity means everyone achieves their full health potential, without being hindered by structural or social barriers.

Race is a social construct, and racism is a social determinant of health. Evidence shows that the concept of race was developed in the context of colonialism and slavery. Over centuries, this has led to the social, political and economic marginalization of racialized populations, perpetuating systemic racism.

Intersectionality – how race intersects with other social identities – must be considered in race-based analyses for health. Yet, there is a lack of clear guidance on the collection, use and governance of race-based data in health across Canada.

Ensuring high-quality race-based data is crucial. When gathered and applied according to best practices, such data can significantly advance equity by:

  • uncovering inequities.
  • revealing approaches that can be scaled, including for improved access to healthcare, quality of healthcare and health outcomes and experiences.
  • ensuring the monitoring and evaluation of interventions.
  • ensuring accountability for delivering equitable care and improving outcomes.

Community governance is a core component of best practices. It encompasses the rights and processes that allow communities to have decision-making authority over their own data. Community governance:

  • builds community trust, enabling the collection and improving the quality of data.
  • enables better informed and ethical use of the data.
  • empowers communities to partner in how healthcare is delivered.

Signatories 

  • Aamna Ashraf, M.Ed. (C.Psych), Senior Manager, Health Equity, Office of Health Equity, Centre for Addiction and Mental Health (CAMH)
  • Adebisi Saliu, Member, Wellesley Institute Board of Directors
  • Dr. Akeem Stewart, MD, Provincial Lead Black Health & Wellness for the Black Health Committee of the Alliance for Healthier Communities
  • Amanda O’Rourke, Executive Director, 8 80 Cities
  • Angela J. Carter, Community Advocate for Health Equity; Managing Director, AC Communications & Consulting
  • Angela Robertson, Executive Director, Parkdale Queen West Community Health Centre
  • Anlan Yao, Advisor, Peel Public Health
  • Arjumand Siddiqi, Professor and Canada Research Chair in Population Health Equity, Dalla Lana School of Public Health, University of Toronto
  • Dr. Astrid Guttmann, Chief Science Officer, ICES
  • Dr. Baiju Shah, Senior Scientist, ICES, Professor, University of Toronto
  • Brenda Roche, PhD, Director of Research, Wellesley Institute,
  • Camille Orridge, Senior Fellow, Wellesley Institute
  • Carie Gall, M.H.Sc., CHE, O.T. Reg. (Ont.)
  • Carolina Berinstein, Member, Wellesley Institute Board of Directors
  • Charmaine C. Williams, Dean & Professor, Sandra Rotman Chair in Social Work, Factor-Inwentash Faculty of Social Work, Professor (Cross Appointment), Rehabilitation Sciences Institute, University of Toronto 
  • Dr. Christine Sheppard, PhD, MSW, Researcher, Wellesley Institute 
  • Colleen MacDonald, Wellesley Institute
  • Corey Bernard, Member, Black Health Equity Working Group
  • Dr. Cory Neudorf, Professor, Dept. of Community Health & Epidemiology, College of Medicine, University of Saskatchewan
  • Craig Earle, MD MSc FRCPC, Chief Executive Officer, Canadian Partnership Against Cancer
  • Debbie Douglas, Executive Director, OCASI – Ontario Council of Agencies Serving Immigrants
  • Delaney Hines, Lead, Equity, Diversity and Inclusion, Heart and Stroke Foundation
  • Elise Leong-Sit, Senior Public & Community Engagement, Knowledge Translation Officer, ICES
  • Elizabeth McIsaac, President, Maytree
  • Emily Mooney, MSW, RSW, Wellesley Institute
  • Fiqir Worku, Project Manager & Advisor, Mental Health and Equity
  • Francis Abayateye, MSc., Data Access Coordinator, Health Research Data Platform – Saskatchewan (HRDP-SK)
  • Gideon Quaison, MPH
  • J. Michael Paterson, Program Leader, Chronic Disease and Pharmacotherapy and Core Scientist, ICES
  • Jai Mills, MSW, RSW, Clinician
  • Dr. Jay Shaw, Assistant Professor, University of Toronto
  • Jemal Demeke, Researcher, Wellesley Institute
  • Jennifer Rayner, Director, Research and Policy, Alliance for Healthier Communities
  • Jeremy Roach, Country Lead – Canada, PokerStars, Flutter International
  • Jesse Rosenberg, Director, Policy, Wellesley Institute
  • Jessica Kitchen, Specialist, System Performance, Canadian Partnership Against Cancer
  • Joanna Delos Reyes, Project Manager, 8 80 Cities
  • Job Moise, Crisis Response Worker, Organization Anchor Mobile Crisis Team, Somerset West Community Health Centre
  • Jude Mary Cénat, PhD, MSc., C.Psych., University of Ottawa
  • Judy Noordermeer, Director, Communications and Partnership, Wellesley Institute
  • Julia Mazza
  • Kathryn Nichol, RN, PhD, CEC, President and CEO, VHA Home HealthCare
  • Keddone Dias, Executive Director, LAMP Community Health Centre
  • Kim McGrail, MPH, PhD, the University of British Columbia
  • Kim Tran, Manager, System Performance, Canadian Partnership Against Cancer
  • Dr. Kwame McKenzie, CEO, Wellesley Institute
  • Lanre Tunji-Ajayi, M.S.M, President/CEO, Sickle Cell Awareness Group of Ontario (SCAGO)
  • Laura Ferreira-Legere, Senior Manager, Public & Community Engagement, Knowledge Translation, ICES
  • Dr. Leyna Lowe, PhD, National Senior Research and Policy Analyst, on behalf of CMHA National
  • Luc Malemo, MD, MFM, MS, MSc (McGill), PhD
  • Marian Vermeulen, Senior Director, Research, Data and Financial Services, ICES
  • Mary Nduati, Community Support Worker, Somerset West Community Centre
  • Maura Eswaradas, Researcher, Wellesley Institute
  • Mauriene Tolentino, Researcher, Wellesley Institute
  • Michael Kerr, Coordinator, Colour of Poverty – Colour of Change
  • Dr. Michael Schull, Chief Executive Officer, ICES
  • Mihaela Dinca-Panaitescu, Senior Advisor, Equity, Inclusion & Human Rights (EI&HR), Toronto Police Service
  • Mugisho Mulimbwa, Coordinator – Equity and Integration, Black Health, Somerset West Community Health Centre
  • Natalie Fitzgerald, Director, System Performance and Analytics, Canadian Partnership Against Cancer
  • Nation Cheong, VP Community Impact and Mobilization, United Way Greater Toronto  
  • Paul Bailey, Executive Director, Black Health Alliance
  • Rishika Wadehra, Policy Officer, Wellesley Institute
  • Rose-Ann Marie Bailey, M.Ed., Diversity, Equity and Inclusion Specialist, Toronto Police Service
  • Sane Dube, DrPH(s), MPH
  • Sanober Diaz, Chair, Wellesley Institute Board of Directors
  • Sarah Sanford, PhD, Researcher, Wellesley Institute
  • Sayani Paul, PhD, Research Coordinator, CAMH
  • Seema Mahmud, Somerset West Community Health Centre
  • Shana Calixte-Pitawanakwat, Sudbury, Ontario
  • Shannon Elliott, Wellesley Institute
  • Dr. Sophie Baker, PhD, Researcher, Wellesley Institute
  • Stefanie Cali, R.B.A (ONT) Assistant Manager, Health Equity, Office of Health Equity, CAMH
  • Sujitha Ratnasingham, Director, Strategic Partnerships, ICES
  • Sume Ndumbe-Eyoh, Director & Assistant Professor, Black Health Education Collaborative, Dalla Lana School of Public Health, University of Toronto
  • Suzanne Obiorah, Chief Executive Officer, Somerset West Community Health Centre
  • Tanya Elese, M.P.M., Southeastern Ontario Coordinator, SCAGO
  • Tina Svensson, Director of Operations, Wellesley Institute
  • Trish Chatterpaul, Manager, Health Equity and Priority Populations, Ontario Health Central Region
  • Youssef Boudribila, PhD
  • Zoha Salam, Postdoctoral Research Fellow, McGill University 

This consensus statement has been endorsed by the Ontario Human Rights Commission

Acknowledgement of Traditional Land

We wish to acknowledge this land on which the Wellesley Institute operates. For thousands of years, it has been the traditional land of the Huron-Wendat, the Seneca, and the Mississaugas of the Credit. Today, this meeting place is still the home to many Indigenous people from across Turtle Island and we are grateful to have the opportunity to work on this land.

Revised by the Ceremonial Committee at the University of Toronto Office of Indigenous Initiatives in April 2021.