Advocates urge collection of race-based data via health cards to address inequities

Crowds attend the Canadian Tulip Festival at Commissioners Park in Ottawa, on May 13, 2023. All Canadian jurisdictions should collect data on racial and Indigenous identity to help address inequities in health care, and the best way to do that is during the health card application or renewal process, a group of experts says. (THE CANADIAN PRESS/Justin Tang)

All Canadian jurisdictions should routinely collect data on racial and Indigenous identity to help address inequities in health care, and the best way to do that is during the health card application or renewal process, a group of experts says.

Dr. Andrew Pinto, the lead author of the commentary published Monday in the Canadian Medical Association Journal, said Black and Indigenous patients have less access to care and worse outcomes but allowing them to voluntarily provide identity data could help track racism in the health-care system. He said it would also help monitor any progress toward addressing stereotypes that lead to poorer care for some people.

"It creates a foundation to say, 'We need to narrow these gaps and develop tailored programs and services,' " said Pinto, founder of the non-profit Upstream Lab based at the MAP Centre for Urban Health Solutions at St. Michael's Hospital in Toronto.

"In Canada, we just lack that data in many, many ways."

Many racialized communities, which have higher rates of some chronic diseases, including diabetes, heart disease and certain types of cancer, have called for race-based data to gain insights into contributing factors such as poverty.

Last fall, Nova Scotia became the first province to start collecting race-based data with input from groups including the Health Association of African Canadians, the United African Canadian Women's Association and the Iranian Cultural Society of Nova Scotia. Residents can provide the information when they register for aprovincial health card or when they renew it every four years. Nova Scotia's Department of Health and Wellness said residents can also provide the data any time as part of the province's Fair Care Project.

Pinto said collecting that data in a universal way instead of repeatedly asking for it when patients access health care would be part of a standardized and consistent approach.

It may also be inappropriate to ask for that information when a patient is in pain in an emergency room, the commentary notes, adding organizations that collect such data often request it from a small fraction of patients.

The commentary suggests asking people about race and Indigenous identity in a "safe and transparent manner," providing anti-racism training to those who collect the data and ensuring that information is not used in any way to reinforce racism and discrimination. The authors also say race and Indigenous identity should not be visible on the patients' health cards.

Manitoba also started collecting data on race, ethnicity and Indigenous identity in May byasking for that information when patients register for care at a hospital.

That was considered the quickest and most effective way of getting the data, following consultations with the First Nations Healthand Social Secretariat of Manitoba and the Manitoba Inuit Association, said a spokeswoman for Shared Health, the provincial health organization.

Manitoba is among provinces where health cards do not expire.

The Canadian Institute for Health Information (CIHI) has guidance on standards for race-based and Indigenous identity data collection by provinces and territories. It said in a report last year that governments should make data governance agreements with Indigenous groups and include them when coming up with culturally safe ways to provide that information.

The report says the standard is adapted from the Ontario government's Anti-Racism Directorate as a way to identify and monitor systemic racism in the public sector. It includes race categories that avoid ethnic origin so that someone who is Korean, for example, would choose "East Asian" and people of Afghan, Iranian or Lebanese descent would pick "Middle Eastern" to identify their race. Some other categories include Indigenous, South Asian andwhite for those of European descent.

Groups in British Columbia have called for race-based data collection after multiple overdose deaths of young South Asians, including international students.

Data on the exact number of those deaths are not available in reports from the BC Coroners Service, which tracks fatalities from toxic substances with metrics such as age, gender and municipality.

However, the province does not collect data on race to gauge any kind of interventions in communities that may already be stigmatized when it comes to drug use.

Kulpreet Singh, founder of the South Asian Mental Health Alliance, said his group provided feedback to a health standing committee last fall on the need for disaggregated race-based data to help those struggling with addiction during the ongoing toxic drug crisis.

It said in a report issued last November that stigma can be compounded by other biases against newcomers to Canada and deter people from seeking medical help.

"If there's a certain demographic or a certain segment of a demographic that's being disproportionately affected by a certain health issue, then we should be able to intervene. We should have the data," Singh said in an interview. "This is what other organizations do. They use data to inform their actions. But it's surprising why government can't do the same."

British Columbia has launched a survey to help identify systemic racism in government services in general.

"We have heard from many Indigenous Peoples and racialized groups that they are being left behind because government services weren't designed with them in mind, which is why we are continuing the work to create a more equitable province," Lisa Beare, minister of citizens' services, said last week in a release. The survey is open until the end of September.

However, Singh called the survey a delay tactic that shirks responsibility following multiple committees and consultations that gauge barriers to equitable care.

"We know the impact that systemic racism has on marginalized communities in Canada, and so we are not at a stage now where we need to conduct more surveys."

Both Pinto and Singh said racialized communities are open to answering questions about race and trust the rationale for collecting that information, some of which helped target needed resources during the COVID-19 pandemic.

"The harms of not collecting the data far outweigh the harms of collecting it," Singh said.

This report by The Canadian Press was first published June 26, 2023

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