BC Freedom of Information and Privacy Association
Your Data Your Rights
As of April 2023, patients checking into any Manitoba hospital or emergency room will be asked for one additional item of personal information at the registration desk: the race or ethnicity with which they identify.
This new aspect of personal data collection comes as a joint initiative of Shared Health and the University of Manitoba. Its purpose is to help identify inequities in healthcare access, delivery, and outcomes based on race.
Disclosure of race-based information is completely voluntary to a patient and they have the right to decline when asked.
The lead on this new data collection initiative is Dr. Marcia Anderson, executive director of Indigenous academic affairs at Ongomiizwin, the Indigenous Institute of Health and Healing at the University of Manitoba.
Anderson is also a Cree-Anishinaabe physician and vice-dean of Indigenous health, social justice, and anti-racism.
“We know that there are racial and ethnic disparities in access to health care, in the care people receive, and in overall health status,” says Anderson. “Manitoba has been a leader in using data to show the disproportionate effects of COVID-19 on racialized communities. Now we will be the first province to systematically collect self-declared race-based data from patients as they access care.”
Shared Health’s chief operating officer of health services, Monika Warren, hopes for broad participation by patients since this data collection could play a key role in improving patient care and health planning, as well as providing enhanced services to the healthcare framework.
“The collection of this demographic data is essential for the measurement of health disparities that result from systemic racism, bias, and discrimination,” says Warren. “We hope the public will see the benefits in participating, as they did when we collected these identifiers during the COVID-19 pandemic. Self-declaring is a way to be counted as a member of your racial or ethnic community and contribute to health research.”
While other provinces in Canada have yet to introduce similar data collection models, 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 intent was to create a harmonized collection system so that accurately compiled data can be compared across all jurisdictions. Manitoba’s new process aligns itself with these standards.
Other countries, such as the U.S., Australia, and England already collect race-based identifiers as part of their healthcare data.
The Centre for Healthcare Innovation (CHI), jointly operated by the UofM and Shared Health, is creating the governance framework for Manitoba’s data collection and will implement strategies for staff training and education on the topic.
On February 2, Ongomiizwin and the CHI held a half-day community engagement event at the Canadian Museum for Human Rights in order to open up the conversation around race-based data collection and what it should look like.
“Meaningful engagement with diverse Black, Indigenous, and racialized communities will be ongoing to ensure the safe, appropriate collection and use of this data,” said Anderson. “These groups will also be consulted about their priorities for data reporting and health research.”
Audrey Gordon, the Manitoba government’s Minister of Health, fully endorses the new initiative.
“There is zero tolerance for racism in our healthcare system,” Gordon says.
At this stage, it’s unclear whether the program will be extended into the broader healthcare network.
“We will await to hear what the province says about this with regard to whether it will be implemented at the primary care level or not,” says Kristen Fyfe, manager of the Open Health medical clinic in Niverville.
Regardless, Fyfe says that she’d be very willing to consider any education and training made available to the staff of Open Health on the topic of race-based inequities in healthcare.
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