Manitoba is the first province to collect data on patients' race—so what has it learned?
In recent years, Manitoba became the first province in Canada to collect voluntary Race, Ethnicity and Indigenous Identity (REI) data at patients registration across its healthcare system.
While discussion of whether to collect REI data to improve equity in healthcare have been around for a while, it reached fruition in Manitoba when Dr. Marcia Anderson, vice-dean of Indigenous Health, Social Justice and Anti-Racism at University of Manitoba, led the project on behalf of Shared Health. Her efforts to collect this data to optimize Manitoba's COVID-19 immunization initiatives gave her first-hand experience with how it could be used to broader effect.
“We demonstrated the importance of collecting this information (during COVID-19 pandemic). We were able to demonstrate inequities in near real time and build public trust in how quickly the system could respond,” says Dr. Anderson. Another impetus for the province-wide collection of REI data was a response to the Truth and Reconciliation Commission’s Call to Action 19 on health indicators and longstanding inequities.
The REI data collected from May 2023 to September 2024 by Shared Health in collaboration with the U of M’s Ongomiizwin Indigenous Institute of Health and Healing and the George & Fay Yee Centre for Healthcare Innovation put a confirmation seal on what has been common knowledge for many healthcare workers.
In Manitoba, the REI data confirmed inequities based on race and ethnicity. African/Black adult patients waited the longest to be seen (an average of 5.5 hours between patient assessment and treatment at Health Sciences Centre (HSC) in Winnipeg, followed by Indigenous adults who waited for 5.3 hours. Those who identified as white had the shortest wait at 4.1 hours. The average Manitoba wait time for all ages was 3.4 hours.
Further, 36.5% of adult Indigenous patients, and 30.4% of African/Black patients left the HSC emergency department without having been examined or treated. In contrast, about 20% of white patients left before being seen.
The results were based on an analysis of 618,803 responses. Of these, 50.7% identified as white, nearly 37% as Indigenous, close to 4% as Filipino, and 2.8% as African and/or Black.
“The findings of this data are, unfortunately, not unique to Manitoba,” said Dr. Anderson, adding that the systemic failure to provide adequate care to an increasingly racially diverse population is a “national issue, but our government and healthcare system are committed to addressing these gaps within our system.”
How is the REI data collected?
The REI data is collected at the registration desk of the hospitals and is completely voluntary. Patients have the right to decline when asked to share this information. However, the decline rate sits at an acceptable 10% in Manitoba, according to Dr. Anderson. “Change management has focused on normalizing voluntary self-identification within registration workflows, providing clear educational materials, and building staff and patient confidence through transparency and training. We continue to monitor the data and adjust processes/messaging as required,” she said.
Challenges to collecting data?
According to Dr. Anderson, the collection, analysis and reporting of REI data is complex, requiring adaptation by the healthcare system digital infrastructure, policies and procedures. “These changes must be exercised with caution and care, and be guided by community engagement and supported by healthcare leadership.”
How is the REI data privacy maintained?
In 2022 the Canadian Institute for Health Information developed a set of Canada-wide standards for the collection of race-based and Indigenous identity data specific to healthcare.
The idea was to build one consistent way of collecting data so it’s easy to compare across provinces. Manitoba’s new approach follows these rules.
“Patients provide informed consent at registration, and their information is protected under the Personal Health Information Act (PHIA), just like all other health records,” explains Dr. Anderson.
She adds that data governance is complex, with Nation-specific data governed by First Nations, Metis and Inuit governing organizations and a provincial REI Data Governance Steering Committee.
How has having this data helped?
According to Dr. Anderson, having province-wide data allows its healthcare professionals to pinpoint where capacity needs to be bolstered and where anti-racism principles need to be emphasized.
“We envision sustaining this initiative by embedding race-based equity metrics into everyday clinical planning and quality improvement, so that equity becomes part of how care is delivered and evaluated. This will be achieved through formalized workflows, staff training and scaling successful pilots in high-impact areas.”
To respond to the disturbing findings of inequity in the healthcare system in Manitoba, as an immediate step, all emergency department staff will have to complete Indigenous Cultural Safety and Anti-Racism training, with additional focus on the Black Health Primer.
“Further anti-racism education will be introduced over time, alongside evidence-based interventions which are being co-developed with the health system—including the Lower Wait Times and System Improvement Team and Provincial Clinical Teams,” adds Dr. Anderson.
Doctors Manitoba is supportive of this new training, saying access to this new data helps physicians better understand how race affects access to health services, which is essential to improving equity in access and outcomes for all patients.
“We are ensuring the rebates we offer on continuing professional development costs will help to cover costs associated with this training too. Educational interventions play a significant role in efforts to dismantle racism, discrimination and bias,” the association noted.