Ontario is starting to collect race-based COVID-19 data. Some worry it could do more harm than good

Sigh. Yes, groups should be consulted, yes, the data should be made public, but hard to see that minorities will be worse off with data than without.

Having better data facilitates discussion of current realities and possible policy options to address disparities:

With Ontario’s race-based COVID-19 data collection beginning “imminently,” health experts say crucial unresolved questions will determine whether those efforts help alleviate the pandemic’s brutal disparities, or cause more harm.

Regulatory changes came into effect last Friday that mandate the collection of information on race for all newly reported COVID-19 cases province-wide, along with data on income, household size and languages spoken. Data collection is beginning once training for public health units and changes to data entry systems are complete, according to a health ministry spokesperson.

Community organizations, researchers, doctors and public health experts have called for the collection of this data, pointing to the disproportionate burden of COVID-19 in areas with more racialized, low-income and newly immigrated residents.

But health researchers said the question of how this data is managed and used is even more important than whether it is collected.

“The collection of race-based data is not the outcome,” said Camille Orridge, a senior fellow at the Wellesley Institute and longtime advocate for health equity data collection. “The outcome is to have the information and use the information to reduce disparities. That’s the goal.

“We need to be clear with people who are collecting the data — government, etc. — that there are a number of things that must be answered before we come to the table to give up the data,” she said.

Orridge cited a list of questions, including whether the data will stay in Canada, whether it will be sold in any form to the private sector, how artificial intelligence will be used with the resulting databases. And most importantly, for her: whether the racialized communities most affected will have oversight and input on whether the data is being used to answer questions and create policies that counter the pandemic’s unequal toll.

She cited a phrase often used in the world of Indigenous policy: “Nothing about us, without us.”

Alexandra Hilkene, the health ministry spokesperson, said “We’re currently in the process of finalizing the terms of reference for the working group that will report to the ministry and help ensure we interpret the data accurately. The group will include policy experts from racialized communities.”

In Toronto, some of the neighbourhoods most affected by COVID-19 have case rates 14 times higher than the least affected neighbourhoods. Those hard-hit neighbourhoods are all clustered in the northwest of the city, an area that has been historically underserviced and has higher rates of poverty, inadequate housing, and other symptoms of systemic disadvantage.

The city’s most affected areas also have significantly higher percentages of Black residents than the least-affected areas, and higher percentages of Southeast Asian and other racialized groups. But health experts say these area-based analyses, which rely on matching the postal codes of known cases to census data, are less revealing than collecting the data directly from individuals.

Toronto, Peel Region and some other health units have already begun collecting this data, but officials argued that it should be mandated province-wide to provide a complete picture. After weeks of urging, the province made regulatory changes to the Health Protection and Promotion Act to mandate the collection of race and sociodemographic information for COVID-19.

But now that the government is about to begin collecting that data, it shouldn’t be exclusively available to them, said Arjumand Siddiqi.

“I would worry that if the data stays in the domain of the government, or if they handpick a small group of people to use it and no one else sees it, we have to rely on what those people tell us,” said Siddiqi, Canada Research Chair in population health equity and a professor at the University of Toronto’s Dalla Lana School of Public Health.

Making the data available more broadly ensures that independent researchers can check the work of others, rebut flawed analyses and conclusions, and ask different kinds of questions.

But Orridge said it’s also important to ensure that the researchers who do get access to race-based COVID-19 data have real relationships in and accountability to the communities that are most affected.

“We have researchers who have no connection to the communities having access to the data, and making their careers on the use of that data,” said Orridge.

“We’ve got to make sure that the data, when it’s being used and published, always has a context, so that we don’t further stigmatize communities.”

LLana James, a doctoral candidate at the University of Toronto Faculty of Medicine who researches race-ethnicity, health data, privacy, AI and the law, noted that Ontario and Canada collect health data in a legal framework that has failed to catch up to the massive technological changes that have occurred, especially in the last decade with the rise of machine learning.

“We have one of the lowest thresholds for legal use of data in the developed world,” said James, noting that technology companies see Ontario as an attractive market for lucrative health-care data, and contrasting Canada’s poor data privacy protections with Europe’s robust framework.

James provided critical comments on the province’s proposed regulatory changes to begin collected race-based COVID-19 data, and believes the current, government-driven data efforts will not help Black, Indigenous and other racialized communities.

Race-based data assumes that “we need to know the race of the person, not how racism is functioning. Those are two completely different scientific questions,” James said.

“We have 400 years of data about what happens to Black people during pandemics,” said James. “We have hundreds of years of race-based data, and it’s changed very little. It’s the will to act (that’s missing), not the will to collect more stuff.”

Like Orridge, however, she believes that any data collection that avoids harm must be centred in and directed by communities. James is the co-lead of REDE4BlackLives, a research and data collection protocol that provides a framework for the ethical engagement of Black communities in Canada.

“Black communities, like Indigenous communities, know exactly what they need,” says James. “They know who advocates for them. They know who shows up for them. And they know who to trust, because they see it with their own eyes.”