Canada collects and publishes very little race-based data in the health care field, writes André Picard.Sean Kilpatrick/The Canadian Press
In the United States, Black women are three times more likely to die of pregnancy-related causes than white women. Black men south of the border are twice as likely to die of prostate cancer than white men. Black adults, regardless of sex, are more than twice as likely to develop diabetes or die from a heart attack than their white counterparts.
Does the same hold true in Canada?
We assume so, but don’t really know because Canada, unlike the U.S., collects and publishes very little race-based data in the health care field, or elsewhere for that matter.
Despite being one of the most multicultural countries in the world, we have chosen a deliberate state of ignorance, ostensibly because we like to pretend we’re colour blind. This “see no evil, hear no evil” approach serves no one. In fact, it harms patients and practitioners.
Where race-based data do exist, usually in smaller-scale research projects, they tell a sickening tale of inequality. Advocates have long called for broader data collection, arguing that we need to understand the scope of racial disparities to be able to correct them.
Thankfully, things are changing.
PEI to collect voluntary info about race, ethnicity in health card applications
Last week, Prince Edward Island became the latest jurisdiction to announce it will collect info about race and ethnicity when people apply for or renew their health cards.
The policy change will “inform interventions to improve health equity and health care access, quality, experience and outcomes,” said Karen Phillips, provincial epidemiologist with PEI’s Department of Health and Wellness.
Nova Scotia, Manitoba, Nunavut and the Northwest Territories already collect race-based data in a similar fashion. B.C. law allows data collection for “identifying and eliminating systemic racism,” but it isn’t done systemically. The big provinces continue to be laggards, despite the fact that they are home to the most ethnically diverse populations.
About 27 per cent of the Canadian population is non-white, according to the most recent census data, which dates back to 2021. That includes: South Asians, 7.1 per cent; Indigenous, 5 per cent; Chinese, 4.7 per cent; Black, 4.3 per cent; and Filipino, 2.6 per cent.
Toronto, the country’s largest city, is 59 per cent non-white; Vancouver, 58 per cent.
We know that racism and discrimination are systemic and widespread in the health system, as outlined in reports like “In Plain Sight,” which found a “widespread and insidious problem” with Indigenous-specific racism and discrimination in B.C.‘s health system.
Racism can result in serious harm, whether it’s an Indigenous man left to fester and die in an emergency room for 34 hours, or a doctor assuming that a Black woman’s heart problems were due to cocaine use.
Ignoring well-established racial differences, such as research that shows South Asians have three to five times the risk of developing diabetes because of a genetic predisposition, can result in poor care and missed opportunities for prevention.
Collecting race-based data can help tease out these issues and, more importantly, spur action to correct them.
In Manitoba, for example, a study by Dr. Marcia Anderson showed that race was a factor in emergency department wait times. While white patients waited an average 4.1 hours to be seen, Indigenous patients waited 5.3 hours, and Black patients 5.5 hours. Indigenous and Black patients were also far more likely to leave the ER without being treated.
In response to the findings, ER staff are now required to complete Indigenous cultural safety and anti-racism training and a Black Health Primer course.
That’s how change happens: by addressing issues revealed through research.
It’s important, of course, that data are collected voluntarily and that people’s privacy is respected as it is with all health records.
The public needs to know, too, that the information will not appear on their health card or on medical charts. Rather, it is used in an aggregated fashion to reveal trends and inequalities between racial or ethnic groups, without identifying individuals.
The big barrier to collecting and using race-based data is technical: digital health systems still need to adapt. But we know it’s doable, even on a large scale.
During the pandemic, for example, the Coronavirus Rapid Entry Case and Contact Management System (CORES) included data on race, income and household size. As a result, we learned Black, Indigenous and people of colour in Toronto were over-represented in the tally of COVID-19 cases and deaths. That allowed, among other things, targeted vaccination campaigns.
The data also allowed people who are too often marginalized and ignored to be heard, an important first step in correcting disparities.
Race, culture, language and socio-economic status can all have a profound impact on health, individually and collectively.
Allowing gaps in data collection to persist is bad for our health, and our health system.