How Canada’s racial data gaps can be hazardous to your health

Posted on February 7, 2019 in Equality Policy Context

Source: — Authors: – Opinion – Canada lags far behind other countries in tracking how ethnicity affects the labour market, the justice system and health care. What are policy-makers missing?

If Olga Lambert lived in the United States, she’d be recognized as having a higher risk of developing aggressive breast cancer, which she’s endured three times since 2008.

Ms. Lambert is black, and American research shows that black women are more likely to develop the disease earlier than white women and more likely to die from it, a discrepancy that’s also evident in research out of Britain. Research has also found that West African ancestry is a risk factor. Ms. Lambert’s grandparents were born in Togo, Ghana and Benin.

These facts are partly why the American College of Radiology urges black women in the United States to have their breast-cancer risk assessed by the age of 30. That’s a full 15 years earlier than Ms. Lambert, who lives in Ajax, Ont., began having mammograms. A paucity of data by ethnicity means Canadian guidelines don’t consider that black women such as her have a potentially elevated risk.

Detailed data on race and ethnicity is taken into account by the U.S. Preventive Services Task Force when it makes national health-care recommendations. In its current guidelines on breast cancer, the panel of physicians and epidemiologists has included a full section discussing African-American women’s poor outcomes from existing treatment strategies.

Little of this potentially life-saving information is available in Canada, which leads to a dearth of knowledge about who is most at risk. From health care to education to the justice system and the work force, Canada has long been reluctant to collect or publish data based on race and ethnicity.

Black women with breast cancer are just one of the groups affected. An absence of data on race means we also lack clear insight into which groups struggle (or succeed) in the labour market, which children are suspended from school or placed in child welfare. These indicators can illuminate health disparities and how to target prevention and awareness efforts; they can provide understanding into whether programs are working, who is most in need of support and whether racial discrimination is at play.

These aren’t the only data gaps in Canada. A months-long investigation by The Globe and Mail found that the country lacks public data about dozens of important questions, from how children with disabilities are faring to the number of homeless people who die on our streets. Those gaps keep citizens in the dark about their health and environment, stifle innovation and prevent governments from understanding the impact of their policies.

The federal government acknowledged that key information gaps remain in Canada, and that it must “accelerate the pace of progress” in the country’s data regime. “We have a lot of work to do to address the gaps in the Canadian landscape,” particularly after “the damage done” by the past government, said a spokesperson for Innovation Minister Navdeep Bains in an e-mailed statement to The Globe. “That’s why we’ve reinstated the long-form census, increased funding to Statistics Canada and unmuzzled government scientists.”

Canada’s data void in race and ethnicity is even more stark when compared with other countries. The United States publishes, each month, the Black, Hispanic and Asian jobless rates (in Canada, the labour-force survey strictly asks about immigration status, not race or ethnicity).

In Britain, all ethnicity statistics collected by the government are posted in one, publicly accessible place; these show police stops and searches by ethnicity, along with patient satisfaction with hospital care. New Zealand runs a survey of Maori well-being and tracks everything from wage gaps to graduation rates and life expectancy by ethnic group.

“It’s helped enormously in the understanding of each other,” said Robert Didham, demographics analyst at Statistics New Zealand. For example, this type of data yields insights into how Maori are overrepresented in prisons, which could indicate “things like social inequalities or even remnants of institutional racism.” It also allows policy to better target problems by showing whether certain groups are more prone to specific diseases, he said.

There are a number of reasons Canadian institutions are less likely to collect data on race than their counterparts in other countries. History, for one.

“Fundamentally, Canadians have an unease with the concept of race, partly because of the experience in the past, where race was used to discriminate against Chinese and Japanese,” said Fo Niemi, co-founder and executive director of the Centre for Research-Action on Race Relations in Montreal.

The problem is also an avoidance of uncomfortable conversations, he said. “We have a Canadian way of avoiding race issues; we don’t talk about it, and how do we not talk about it? We don’t collect data based on race. We collect on everything else − but not on race.”

As a result, Canada is missing “everything,” Mr. Niemi said, from who is in juvenile detention to dropout rates and voting patterns. “That reluctance led to a situation where we are unable to really measure or document, both quantitatively and qualitatively, the effect of some social and economic policies.”

Meanwhile, the United Nations has repeatedly rebuked Canada for its lack of data on the ethnic composition of its population. And an increasing number of people − from academics to community organizations – are pushing to close the gap.

“The lack of race-based statistics in Canada is a huge problem,” said Wanda Thomas Bernard, an independent senator who was the first African Nova Scotian to be promoted to full professor at Dalhousie University. “This is part of a national conversation that needs to happen.”

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