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Why race-based data matters in health care

COVID-19 has had a disproportionate effect on racialized communities, especially Black and Indigenous people in Canada. In the United States, overwhelming data has shown how BIPOC communities have had higher rates of COVID-19 infection and deaths. But the real extent of these effects in Canada isn’t yet known, due to governments’ persistent decision to not collect data that distinguishes between racial groups.

Recently, more and more advocates have been emphasizing the need for race-based data in health care. In an April letter addressed to Premier Doug Ford, Deputy Premier Christine Elliot, and Chief Medical Officer David Williams, 192 organizations called on the Ontario government to begin collecting race and socio-demographic data during the pandemic. “We cannot address what we cannot measure,” the letter states. “We will not address population health inequities and effectively contain COVID-19 without data that illuminates gaps to care in our system.”

Since then, the Ontario government has added questions related to race and ethnicity to the list of questions asked of COVID-19 patients. Other provinces, like Quebec and Manitoba, have announced similar changes.

But why wasn’t this data being collected in the first place? After being asked about race-based data collection in April, Ontario’s chief medical officer of health suggested that the province’s approach to the crisis would be colour blind. “Regardless of race, ethnic or other backgrounds, they’re all equally important to us,” Williams said.

Though such an approach may give the semblance of equal treatment, colour-blind policies can actually keep us from tackling important problems by shielding us from the disparities that exist between racial groups. Without race-based data, systemic changes that address inequality and discriminatory policies will be more difficult to accomplish.

According to the Ontario Human Rights Commission (OHRC), race-based data could play an important role in implementing the province’s human rights code. The OHRC’s data collection fact sheet states that “[i]n the context of racial discrimination, data collection and analysis can be a necessary or even an essential tool for assessing whether rights under the Code are being or may be infringed and for taking corrective action.”

If there are no real procedural reasons for why governments in Canada haven’t been collecting information on race, citizens may conclude that having the data necessary to better combat racism is simply not a priority. “Discrimination is not necessarily about what you do. It’s often about what you don’t do,” Dr. Kwame McKenzie, CEO of the Wellesley Institute and a professor of psychiatry at the University of Toronto, told the CBC. “And the fact that we haven’t collected this data seems neglectful, because everybody really knew we should be collecting these data but it was never at the top of anybody’s list of things to do.”

Data on race is especially important in Canada in order to debunk the persistent myth that racism isn’t a problem in the country. A 2019 Global News poll found that nearly half of respondents felt that racism was either a “minor problem” or “not really a problem” in Canada. Strikingly, the same poll seemed to reveal Canadian’s deep-seated racist biases, finding that nearly half of respondents either “strongly agreed” or “somewhat agreed” with the statement that: “While I sometimes think racist thoughts, I wouldn’t talk about them in public.”

This pandemic has demonstrated, once again, that Canada doesn’t care about Indigenous peoples.— Courtney Skye, policy analyst, Yellowhead Institute

By collecting race-based data on COVID-19 and other issues, it will be harder for Canadians to ignore — or plead ignorance — when it comes to discussing the disparities that exist between different racial groups. The data on race that we have already shows significant disparities in terms of income, higher rates of incarceration and school expulsions, as well as higher rates of food insecurity and homelessness among BIPOC versus white Canadians.

The quality of race-based information, how it’s collected, and how it’s used is also important to consider. Though data about Indigenous communities, for example, has been collected to an extent, the reliability of that data has been put into question. Research from the Yellowhead Institute found discrepancies between the number of cases of COVID-19 calculated by Indigenous Services Canada (ISC) and cases reported by the communities themselves. In early May, ISC reported 175 cases of COVID-19 among Indigenous communities, while community-sourced data found that there were nearly three times that amount, with 465 cases reported.

These discrepancies exemplify how Canada has continued to fail these communities by not providing disaggregated data based on race, not providing accurate data collection coordination between provincial and federal governments, and not taking into account the many Indigenous people in Canada who do not live on reserves.

“This pandemic has demonstrated, once again, that Canada doesn’t care about Indigenous peoples,” writes Courtney Skye, a policy analyst at the Yellowhead Institute, in a recent article. “While long asserted by our communities, we have the data — or rather, the lack of data, to prove it.”

The COVID-19 pandemic has marked a turning point in the data collection discussion and — along with the momentum created by recent police violence and anti-racism protests — advocates are now also calling for race-based data to be collected on other issues. So far, they have seen some notable success: in Ontario, the province’s police watchdog organization will begin collecting data on race for the first time, and Statistics Canada will begin to collect race-based data on how employment rates have been affected by COVID-19, among other developments.

However, governments still need to go further. In countries like the United States, where thorough data on racial disparities in health and other issues is widely collected and generally available, BIPOC communities nonetheless continue to live with significant inequalities. And even when data is collected, that doesn’t necessarily mean it’s widely shared. Recently, federal data on the racial breakdown of COVID-19 infections was only made available after the New York Times sued the Centers for Disease Control and Prevention, forcing them to make the data available.

What we do know about the challenges facing BIPOC communities in Canada shows that inadequate housing and dangerous working conditions as essential workers, means that these communities are being especially hard hit by COVID-19. With the stakes being life or death, real change is urgently needed — and accurate data is the first step.