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Chief Public Health Officer Theresa Tam and Deputy Chief Public Health Officer Howard Njoo are reflected in a computer screen showing date on Canada’s COVID-19 situation during a news conference in Ottawa on April 13, 2020. THE CANADIAN PRESS/Adrian Wyld

Race-based health data urgently needed during the coronavirus pandemic

A one-size-fits-all approach to COVID-19 does not work.

David Williams, Ontario’s chief medical officer of health, recently said the province will not collect data on race and other indicators of who is being hardest hit by the COVID-19 pandemic, saying, “regardless of race, ethnic or other backgrounds, they’re all equally important to us.” Williams says he’s following the guidance of the World Health Organization (WHO) and he’s not alone.

Ontario Chief Medical Officer of Health David Williams answers questions at the daily briefing at Queen’s Park in Toronto on April 20. THE CANADIAN PRESS/Frank Gunn

No Canadian province or territory currently collects these data, although Alberta’s Chief Medical Health Officer Deena Hinshaw committed last week to looking into it in partnership with First Nations communities. A spokesperson for the Public Health Agency of Canada similarly said the federal government has “no plans” to collect disaggregated data on social determinants of health as risk factors for COVID-19.

There are outbreaks in shelters, among migrant farm workers and in long-term care homes. LGBTQI2S people have been harder hit by economic shutdowns.

Meanwhile, temporary closures of consumption and treatment services for people who use drugs have increased their vulnerability. Public-facing essential workers continue to risk exposure, all pointing to their expendability masked under a one-size-fits-all response.

No legal barriers to collecting race-based data

While the provinces are unresponsive to calls for race-based data, there has been some movement. After thousands of people and hundreds of organizations called for the collection of race-based and sociodemographic data, some local public health units in Ontario stepped up to fill the provincial void.

Peel, Toronto and London-Middlesex public health units have all announced plans to collect and use sociodemographic and race-based data for contact tracing.

Nationally, groups like the Pan-Canadian Dialogue to Advance the Measurement of Equity in Health Care continue to advance the conversation.

But the federal and most provincial governments still refuse to act. An Ontario Ministry of Health spokesperson claims that current legislation does not “authorize health information custodians to collect race-based data.” Yet, as researchers in health equity, we know this is possible under current laws, because we and our partners have long gathered data on race and other social factors that affect health and healthcare.

Long before the pandemic, many racialized communities were advocating to advance the systematic collection of race-based data in health care.

There are growing calls for Canada to collect wider demographic data after numbers from the U.S. revealed that racially and economically marginalized people are disproportionately affected by COVID-19.

American and international data show us how

The WHO says health systems need equity-informed data to take informed action. Strikingly, the Ontario Public Health Standards require the collection of these data, supported by Williams’ own 2018 report Improving the Odds: Championing Health Equity in Ontario.

The United States does collect race-based data. The evidence shows that African Americans and Indigenous people are among the hardest hit by the coronavirus. Systemic anti-Black racism has been cited as a root cause of African American health disparities.

If you think these issues only exist south of the Canada-U.S. border, think again. In 2017, the United Nations said they were “deeply concerned about the human rights situation of African Canadians;” it recommended that race-based data be collected to identify and address the disparities experienced by Black Canadians.

Read more: Coronavirus is not the great equalizer — race matters

Indigenous health data requires its own strategy, led by and for Indigenous people. Due to historic and present-day practices that misuse data or focus only on negative findings, First Nations, Inuit and Métis peoples, and many Indigenous leaders and communities do not want governments or mainstream healthcare providers collecting and using data about them. Instead, Indigenous-governed health care providers collect and use their own data following the principles of Indigenous data sovereignty.

Equalizing the COVID-19 response

This pandemic has shown that a lot can be done given enough political and collective will. Shifting to a health equity response driven by data is doable too.

Of course, data is not the only step needed to ensure an equitable COVID-19 response. Detailed plans for high-risk places like shelters and long-term care homes, stronger protections for low-income essential workers and the inclusion of marginalized communities at decision-making tables are vital, too.

U.S. data shows that the novel coronavirus disproportionately affects Black communities, yet that type of race-based analysis is absent in Canada, leaving Black Canadian families without key information. (Shutterstock)

But collecting race-based health data is an important step — one that can be immediately implemented in the province’s new Pandemic Threat Response (PANTHR) data platform. Once that data is integrated into the overall provincial data, it can help direct test kits and personal protective equipment to where they are most needed. Race-based health data is needed to help citizens and residents understand the pandemic’s full impact.

Every day, decisions about the pandemic are made. Transparency in data can ensure that care is available for people who have — so far — been left behind.

We have been able to identify certain groups at increased risk largely due to their location — long-term care homes, shelters, farms. There are likely other groups at increased risk of infection that cannot be identified in this way. Based on U.S. data, Black and Indigenous people are experiencing increased risk of infection and death. We need race-based and other sociodemographic data in Canada in order to determine if any groups are at greater risk, in order to take appropriate supportive action.

This is a corrected version of a story originally published April 30, 2020. The earlier story incorrectly stated that York Region in Ontario will collect race-based data for contact tracing.

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