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Toronto to collect race-based coronavirus data, province still not doing so

Last Updated Apr 22, 2020 at 11:49 pm EDT

Toronto Public Health (TPH) says it is stepping up to do what the Ontario government hasn’t yet – develop a system to collect race-based data during the COVID-19 pandemic.

In the city’s daily Public Health update, Medical Officer of Health Dr. Eileen de Villa explained she had been asked about the impacts the virus could potentially have on communities and said they would be exploring ways to add race-based data to their collection.

“Without these types of data, we are not able to fully understand if this pandemic is disproportionately affecting certain people in our community and ways to address these potential inequities,” Dr. de Villa said. “My team is actively exploring ways to collect and analyse this information in our new data collection.”

This is welcome news for black community health leads and advocates, including Paulos Gebreyesus, who is the Executive Director of the Regent Park Community Health Center. He has been calling on governments for years to collect race- and ethnicity- based data across all communities in Canada.

“We know that the burden of health falls very inequitably on those that are marginalized, on low-income communities, and on those who are racialized,” Gebreyesus said. “It’s an important element [to get a] better understanding of COVID on the city and our residents.”

These calls have been getting louder since the start of the outbreak, one of the worst public health pandemics the country has seen.

Data collection in the United States has shown troubling trends that highlight higher rates of the COVID-19 infection and deaths amongst African Americans and Latinx communities.

There is already a network of hospitals and clinics in Toronto, such as the Regent Park Community Health Center, who have been collecting race-based data for years now.

That information has already highlighted disparities that show how certain communities are at higher risk of illnesses, who is accessing healthcare and who can’t, and who is being screened for cancers and who isn’t.

Toronto Public Health says it’s going to lean on the existing network in an attempt to collect this data during the pandemic.

“We are partnering proactively with some hospitals, some research institutes, and the Public Health School at the University of Toronto to ensure that we can access as much information as possible,” said Councillor Joe Cressy, Chair of the Toronto Board of Health. “It’s important for us to understand whether different ethno-cultural groups are at higher risk, whether people who work in different professions are at higher risk.”

Studies have shown that there is a strong link between low income and health disparities – factors that include food insecurity and affordable housing.

In 2016, Ontario’s Chief Medical Officer of Health Dr. David Williams drafted a report that outlined how health inequities are impacting communities. In it, Dr. Williams wrote that to understand these risks, the Ontario government to provide data.

Earlier this month, CityNews asked Dr. Williams if Ontario had plans to collect race-based data during the pandemic, in which he said that the two communities at high-risk of the virus are seniors and those with underlying medical conditions, and those are the province’s priorities regardless of race or ethnic background.

On Monday, provincial health leaders, warned that those in low-income neighbourhoods are also at a higher-risk of COVID-19.

“More broadly speaking, there’s a very strong correlation between race and poverty,” said Gebreyesus.”We feel very strongly that the collection of socio-economic data, the collection of race-based data, can only contribute to our understanding of how health can be better protected in Toronto and elsewhere in Canada.”

Despite these jarring statements, the province, who mandates data collections, has not committed to collecting that information.

“Toronto Public Health is doing this work because the provincial government is not,” Cressy said. “We have 35 Public Health Units right across the province, we’re only one. What would be most helpful is that, as is normally the case with public health measures, that this data would be collected and shared province-wide.”

A spokesperson from the Ministry of Health and Long-Term Care said health was excluded from the Anti-Racism Act in 2017, which enables the government to mandate the collection of race-based data.

“Health information custodians (HICs), including hospitals, were not included in the act due to Personal Health Information Protection Act considerations, so the act does not require or authorize HICs to collect race-based data,” the spokesperson said. “HICs were also not included due to policy concerns about collecting, using and disclosing personal health information within the act’s framework.

In addition to Toronto, Peel Public Health tells CityNews it began collecting race information for probable and confirmed cases to determine how to best respond to the community.

While York Region and Hamilton say they are not.

“At this time, shifting directions to collect this level of data would not directly impact public health’s response to the evolving COVID-19 outbreak,” writes Scott Cholewa, Manager of Infectious Diseases for York Region Public Health. “Given the availability of other data sources, a future analysis of York Region case-related data against data related to the social determinants of health could be explored. The focus in York Region remains on our case, contact and outbreak management activities.”

Durham Public Health did not responded to media requests.

Dr. de Villa says she will continue to provide updates on this process, adding that TPH is hoping to improve their tools to allow for the collection of race-based data, and address any potential health inequities that emerge.

“Reducing health inequities and improving health status in all residents is core to our work in public health,” Dr. de Villa said.

To form a better response that is inclusive of marginalized and racialized communities, experts say more accurate and reliable information is needed.

The larger the data for the health system, the better so therefore maintaining calls on provincial and federal leaders to prioritize taking steps to understand the barriers communities face in accessing health care is crucial.

“Ultimately it has to be aggregated, it is anonymized, and it is much larger patterns that we’re trying to understand in order to develop effective public health strategies,” Gebreyesus said. “This is why the larger your data set, the more accurate and the more reliable the information is that the health system has in order to respond.”