May 1, 2024
On May 15, 2024, more than 100 leaders will be gathering in Toronto for Powering Equity: Canada’s first summit on the collection, use and governance of race-based data for health.
There is new energy in Canada aimed at understanding and addressing differences in health among racialized groups. This groundbreaking summit will shine a spotlight on efforts across the country and harness the energy to elevate new ways of thinking and doing.
There is diversity in the way that race-based data is currently collected, used and governed in Canada. But in order to most effectively promote the interests of racialized populations, it would be advantageous for all those involved to agree on core evidence and a common framework.
The following draft consensus statement reflects the thinking of the many partners who have been working together to date in the lead-up to this summit. Please read it in advance of your attendance, as it will be the subject of important discussions during the day. Our hope is to end the summit with a consensus statement that reflects our shared commitment to powering health equity in Canada.
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DRAFT CONSENSUS STATEMENT
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 have increasingly started collecting race-based data so they can understand the differences in health and healthcare between racialized groups and promote health equity.
A few recent examples:
- In December 2021, Statistics Canada launched its Disaggregated Data Action Plan to improve the availability of statistical data on racialized populations and enable a stronger understanding of their health experiences. There have been updates to survey templates, sampling design and topics selected for reporting to ensure timely dissemination of diverse health needs.
- In March 2022, the Canadian Institute for Health Information (CIHI) released Guidance on the Use of Standards for Race-Based and Indigenous Identity Data Collection and Health Reporting in Canada. The standards have now been implemented in several CIHI data holdings, including the Discharge Abstract Database, the National Ambulatory Care Reporting System, and the modernized Health Human Resources Minimum Data Set.
- In June 2022, CIHI updated a toolkit to assist health stakeholders with measuring sociodemographic data and reporting on health inequalities.
- In October 2022, Nova Scotia’s Department of Health and Wellness launched the Fair Care Project. They invited Nova Scotians to provide race-based data when updating their provincial health cards. The initiative has been remarkably successful, garnering more than 200,000 responses in the first 18 months.
- In April 2023, Ontario Health’s Toronto Region updated their sociodemographic data collection template, calling on all health service providers to implement these changes along with a plan for community governance. This work is a further step in data collection that began in 2013 through the Toronto Central Local Health Integrated Network’s Measuring Health Equity project.
- In May 2023, Manitoba’s Service Delivery Organizations partnered with Ongomiizwin – Indigenous Institute of Health and Healing, the George & Fay Yee Centre for Healthcare Innovation and Manitoba hospitals to begin collecting race, ethnicity and Indigenous identity data during patient registration in healthcare facilities and programs in the province. The effort builds on lessons learned during the COVID-19 pandemic, where race-based data proved instrumental in setting vaccine eligibility criteria for racialized communities.
- In June 2023, British Columbia introduced a provincial survey to collect demographic data from residents and identify equity gaps across all provincial programs and services. Available in 15 languages, the survey was developed through an extensive engagement process with racialized communities.
- In September 2023, ICES launched a guidance document and framework for anti-racist approaches to research and analytics to guide scientists and research teams at the organization.
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 will ensure we optimize 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 spur health equity. We believe a specific consensus statement should be in place because of the nation-to-nation responsibilities that Canada has to Indigenous People.
Core Evidence
The consensus statement is built on a core evidence base.
Race is a social construct, and racism is a social determinant of health.
When collected and used in accordance with best practices, race-based data in health can advance fairness by:
- ensuring the most effective use of resources,
- uncovering inequities,
- revealing promising approaches that could be scaled up,
- developing policy and practice to tackle inequities,
- improving access, quality of healthcare and healthcare outcomes,
- monitoring and evaluating the effectiveness of interventions, and
- ensuring accountability for improving outcomes and delivering equitable care.
Community governance is a core component of best practices. Community governance:
- builds the trust of communities, enabling the collection of the data,
- improves the quality of the data that is collected because of that trust,
- enables better informed and ethical use of the data, and
- empowers communities to partner in how healthcare is delivered.
Powering Equity Consensus Statement
There are differences in well-being, the risk of illness, access to services and the quality of services delivered to racialized groups in Canada. These differences have been linked to worse health outcomes for some racialized groups.
Organizations and governments nationwide should strengthen capacity for the collection, use and governance of race-based data to address the inequities and advance health equity.
Community governance should be a core component of this work. We should support the efforts of communities to access their collective health data, to determine who else can access it, and to ensure it is used for their benefit.
Those committed to this consensus statement will continue to learn from one another in order to accelerate the rate at which we power equity.