Health agency reveals race-based data guideline as calls grow for nation-wide collection

Yes!

Will take some time given the coordination required to ensure consistent data across provinces, with Quebec unlikely to play ball unfortunately (CIHI data does not automatically include Quebec data. When I asked the Ministère de la Santé et des Services sociaux for the comparable birth tourism (non-resident) birth statistics, I was met by bureaucratic obfuscation and had to go to major hospitals directly):

In response to calls for better demographic data to understand health inequities and COVID-19, this week the Canadian Institute for Health Information is releasing an interim race data standard that public health agencies can use.

Many advocates, though, are pushing for more than advice, saying the federal government has a leadership role to play to ensure there’s consistent data, regardless of jurisdiction. That gap in information affects the provincial, territorial, and federal response to the pandemic and until the country moves forward with race-based and disaggregated income data, Canada “can’t possibly target resources” and care where they’re most needed, said Dr. Jennifer Rayner, an epidemiologist and director of research at the Alliance for Healthier Communities.

“It’s ignorance and blindness to where there’s gross inequities. Until we know where the discrepancies and inequities in health are, we can never tackle them,” she said, saying communities need action and the work needs to start somewhere. “I hate to keep waiting until we get it all perfect.”

The alliance is part of a national working table headed by Canadian Institute for Health Information (CIHI)—which the institute notes are not formal—that’s considering two things: what data to collect, and how to train health professionals so they’re comfortable asking these questions. While this work has been going on for years, the report on the interim standard noted a “heightened awareness and interest” in collecting such data to better understand COVID-19’s spread.

The lack of data on race in Canada makes it difficult to monitor racial health inequalities and CIHI’s interim standard was created in an effort to “harmonize and facilitate collection of high-quality data,” according to a copy shared with The Hill Times of the standard, “Race-Based Data Collection and Health Reporting,” to be released later this week.

It proposed two questions asking patients to identify their race categories (also giving the option of “prefer not to answer”) and whether they identify as First Nations, Inuit, or Métis.

Though the Public Health Agency of Canada (PHAC) has said it is looking into the possibility of collecting more demographic data related to COVID, most said it’s a matter of political will, under the direction of Health Minister Patty Hajdu (Thunder Bay-Superior North, Ont.) and Indigenous Services Minister Marc Miller (Ville-Marie–Le Sud-Ouest–Île-des-Soeurs, Que.).

When asked, neither of the ministers’ offices, the PHAC, or CIHI offered a position on whether such data should be collected nation wide.

However, Ms. Hajdu’s spokesperson, Cole Davidson, said in an email that “[d]emographic data collection and data sharing between the federal and provincial/territorial governments is crucial to advancing our knowledge of COVID-19 and understanding potential inequalities in our health care system. We’re working with provinces and territories to ensure we’re collecting the data we need to better understand this pandemic.”

And while these conversations are happening, advocates say it’s not leading to the outcome that is becoming more urgent by the day—a commitment and timeframe for nationwide data collection.

“As a national strategy, if you don’t value gathering the data it’s hard to motivate other places to do so,” said Aimée-Angélique Bouka, the College of Family Physicians of Canada vice-chair-elect for residents. “You’ll see disparity across the board if you don’t see proper federal leadership in the project.”

‘It’s all about political will’

Canada has a blind spot regarding its treatment of racialized groups and immigrants, despite the evidence, she said.

COVID-19 was thought to be “the grand equalizer,” but some populations have proved more vulnerable. In the United States, by mid-April nearly one-third of those who died were African American, an Associated Press report revealed, though Black people represent about 14 per cent of the population where they reported. Such disparities exist in Canada, though Dr. Bouka said society is uncomfortable with painful questions that reveal a pattern of neglect.

“COVID is only a snapshot and a clear representation of what happens in our country in a systematic way.”

She said she would add a question about immigrant status, and how long a person has been in Canada as other important markers that influence health, said Dr. Bouka, who wrote about that blind spot for Policy Optionsthis month.

Because we don’t have this self awareness we are slow to accept it, but once the outbreaks became evident, demographics became impossible to ignore, she said.

For more than two decades, Independent Senator Wanda Thomas Bernard has been calling for race-based data collection.

“It’s so frustrating and infuriating,” said Sen. Bernard (East Preston, N.S.), a former social worker and researcher who co-authored a 2010 book, Race and Well-Being, which she said demonstrated racism is an everyday experience for Black Canadians and has an impact on all forms of their health.

“I can’t help but ask myself, ‘How many more casualties do we have to see before there’s a true appreciation for why the collection of this data across all provinces and territories [is] essential?’”

Sen. Bernard said she has been asking these questions of Liberal ministers and their aides—she’s not comfortable divulging the details of these conversations—and while she remains hopeful, she said it’s “all the more urgent to make the decision now.”

“We need to be on the same page with this, and let’s cut through the politics,” she said, and look at COVID-19 as a starting point, an “awakening” for the inequities in health that long predated the pandemic.

Unfortunately, it takes more than proof to shift policy, said Dr. Bouka and it becomes about building more evidence and raising enough voices to make inaction impossible.

“It’s mostly us being reminded so politicians can’t ignore it. Ultimately, it’s all about political will. If your weaknesses are shown repeatedly, then you can’t just pretend that you didn’t know,” she said.

Though it’s left up to the individual jurisdictions, Sen. Bernard said it’s important to have data that’s consistent across the country, which requires leadership so that it is collected in the same way.

Alex Maheux, CIHI spokesman said by email it’s up to the provinces and territories to decide how to proceed, but it has expressed willingness to support jurisdictions in that data collection and is currently working with partners to understand race and ethnicity data needs.

Earlier this month, Manitoba became the first province to track the ethnicity of COVID-19 patients while Quebec and Ontario have said they will as well. At a local level, Toronto has also said it tracks demographics.

In mid-July, CIHI said it will also publish a broader discussion document, followed by ongoing engagement with relevant stakeholders to “refine” the standard, if needed.

Public Health Agency of Canada spokesperson Maryse Durette said by email the government is committed to working with the provinces and territories—as well as other partners—to improve data completeness and access, including demographic information.

“These indicators will help to further our understanding of COVID-19 among different population subgroups and to monitor trends going forward,” she said, and it plays “a critical role” in helping to understand disease severity and risk factors, to monitor trends over time, and to ensure that public health measures can be effectively designed and delivered where needed.”

Data collection on Indigenous people ‘distinct’

CIHI’s standard notes that though Indigenous groups are often considered alongside racial and ethnic categories, First Nations, Inuit, and Métis have “inherent and collective rights to self-determination,” including ownership and governance of their data. That warrants “distinct consideration” and must include engagement with Indigenous communities and data governance agreements.

Canada tracks on-reserve cases of the coronavirus, but with nearly half of First Nations living off-reserve, the picture is incomplete. Yellowhead Institute independently researched, and on May 12 published findings revealing more than triple the cases reported by Indigenous Services Canada. Mr. Miller has acknowledged the department’s data is insufficientand on May 9 announced $250,000 towards improving data collection—not enough, according to Yellowhead researcher Courtney Skye.

“If we’re going to recognize First Nations, Indigenous, and Inuit are more impacted and more at risk for poor outcomes because of COVID-19, there needs to be a multi-jurisdictional prioritization of getting proper information available to communities to make informed decisions,” she said.

“Communities have a right to that information and the federal government has a fiduciary responsibility to make sure this work is adequately funded.”

Rose LeMay, CEO of the Indigenous Reconciliation Group and regular Hill Timescolumnist, penned a plea in April for COVID-19 data that notes background and Indigeneity. A month later, she said she remains baffled there’s been limited movement to close the data gap.

“This is a once-in-a-lifetime data dump, if we were to access it, because this shows the inequities of the system”, she said, noting Canada has “substantial work” to build trust given its problematic history collecting information on Indigenous people, and declaring who is and isn’t status.

That could be addressed by involving organizations perceived as objective to lead the way alongside Indigenous groups, and would likely require building new partnerships to do it well.

The lack of trust shouldn’t stop this work from happening, she said, adding the “how” is a “purely technical exercise” that she said she thinks Canada’s health-care system is capable of managing.

Ms. Skye said the patchwork approach isn’t working and it needs to be led by Indigenous people and be properly resourced. She added that this is another indication that the Liberal government’s approach to reconciliation is more for “show” than addressing “tangible barriers,” like health, that impact the daily lives of Indigenous people.

“These realities are known, are well-documented, and have existed for a long time, and there hasn’t been enough of the practical work done on behalf of the federal government and provinces,” she said. “It does come down to the will of the government.”

Source: Health agency reveals race-based data guideline as calls grow for nation-wide collection 

About Andrew
Andrew blogs and tweets public policy issues, particularly the relationship between the political and bureaucratic levels, citizenship and multiculturalism. His latest book, Policy Arrogance or Innocent Bias, recounts his experience as a senior public servant in this area.

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