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

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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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Even the data that are collected are often too vague to be of much use. In the 1980s, the Employment Equity Act introduced the term “visible minority” to the Canadian lexicon, and it’s still used by the federal government and Statistics Canada to mean everyone who isn’t white or Indigenous. Many advocacy groups and researchers, along with the UN, say the term should be scrapped as it lumps people together without reflecting nuances of which groups are faring well, and which are being left behind.

In particular, the UN’s committee on the elimination of racial discrimination has raised concern − for more than a decade − about Canada’s use of the “visible minority” term. “It renders invisible the differences in the lived experiences of diverse communities,” its report in 2017 said.

Carl Everton James, who studies race and equity in the Greater Toronto Area, agrees that the term “visible minority” lumps together too many different groups of people.

“If you drill down into data, you will see the experiences of Asian, South Asians and Blacks and Latinos would be different,” said Mr. James, a professor in the faculty of education at York University. “They have different histories, they come from different communities, different cultures et cetera, et cetera.”

A few public school boards across the country collect race-based data, but not very many. One that does is the Toronto District School Board, which has been collecting robust data for years. Mr. James was able to pull it apart to study high-school graduation rates and postsecondary plans of African-born, Caribbean-born and Canadian-born black students separately. He then dissected those categories further to compare genders and different generations.

This type of disaggregation of the “Asian” category could illuminate challenges faced by Filipino students, said Mr. James, who are often newer to Canada than those from other Asian countries.

At the postsecondary level, he said it’s even worse. “I don’t know of any universities collecting race-based data of their students,” he said. “A number of universities, like U of T and York have said they would, but we have no evidence of them having done so.”

The list of disciplines where race- or ethnicity-based data could reveal uncomfortable truths is extensive. Take the workplace: Michael Bach, founder and chief executive officer of the Canadian Centre for Diversity and Inclusion, said it’s tough to know whether progress has been made in improving diversity among those in leadership positions.

“It would cut through the veneer of marketing, where you’ve got employers saying ‘x percentage of our executives are racialized,’ ” he said. “Okay, how are you defining executive? Is it self identification …? [Rigorous data] would really give us a picture of what the upper echelons of employment in this country look like.”

(There are indications of what this data would reveal. Ryerson University research shows racialized minorities comprise just 1.7 per cent of senior leadership in the corporate sector in Montreal and 7 per cent in Toronto. On corporate boards, 90 per cent of large companies in Toronto have no racialized minorities).

In the justice system, “we don’t know most of what’s going on with regards to race,” said Akwasi Owusu-Bempah, assistant professor of sociology at the University of Toronto whose research focuses on policing and race. He said everything from police stops and searches to the court system, including bail hearings and sentencing, could benefit from race-based data. In the absence of hard data on who is committing crimes, for example, public opinion polls show a tendency to vastly overestimate the degree to which racialized groups have criminal records, he noted.

As a result, “we can’t develop effective public policy,” he said. Doing his research has meant filing scores of access-to-information requests, such as on the racial background of people incarcerated in our provincial correctional facilities. In some cases, such as in courts, race-based statistics aren’t collected in the first place; in others, such as with the RCMP, it is collected but unavailable to researchers, he said.

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Indigenous and black communities also want clearer race-based data about child welfare: The limited data that we do have consistently show that their children are overrepresented. “Collection of disaggregated data is essential to addressing the overrepresentation of First Nations children in child welfare, juvenile justice and other poor outcomes,” said Cindy Blackstock, executive director of the First Nations Child and Family Caring Society of Canada. “Such information identifies the scale of the problem and what drives it, so interventions can be tailored to address the causes of disadvantage, not just the symptoms.”

That said, historically, Indigenous people have often suffered from Canadian data collection practices. For more than a century, the Indian Act has forced them to submit personal information about their family connections and residences to the government, often with harsh results. The resulting distrust has left a sizable data gap that communities want to fill − but only if the process is led by them.

“Health care has been a major site of harm for Indigenous people,” said Suzanne Stewart, the director of the Waakebiness-Bryce Institute for Indigenous Health at the University of Toronto.

That legacy includes denying 1,300 people, mostly children, food and dental care, so that Canada’s 1940s government could observe the effects of malnutrition. Both children and adults were also used as test subjects in “Indian hospitals,” sometimes subjected to unnecessary surgeries.

Even if people are willing to participate, most research isn’t designed with Indigenous communities in mind. People on reserves who lack regular postal service don’t get counted in surveys, she pointed out, nor do those in cities without permanent addresses.

Dr. Stewart has partnered with a variety of groups to try and solve this problem, and hopes to be collecting national health data within a year. Meanwhile, the First Nations Health and Social Secretariat of Manitoba has been working on its data set for decades.

Designed by First Nations health directors and community members, its Regional Health Survey has collected data from reserves and northern communities since the mid-1990s. The secretariat has since branched out to study early childhood education, and is about to contribute to a national survey on First Nations labour and employment, which is being overseen by the First Nations Information Governance Centre in Akwesasne, Ont.

Culturally relevant Indigenous preschool programs have been born out of the data, said program director Leona Star. So have initiatives centred on diabetes, suicide prevention (including programs targeted at youth) as well as maternal and child health. The survey is conducted every four years by paid community participants. “It’s continued to provide that evidence for the need for these programs,” Ms. Star said.

Another goal, Ms. Star said, is to “assert our own data sovereignty,” which in practice means owning their own servers. To this day, many Canadian universities won’t share – or return – historical objects of study, including biological samples taken without consent.

“We are telling our own stories and it’s not someone who’s non-Indigenous telling our story on our behalf,” Ms. Star said. “That needs to – that has to stop.”

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For Ms. Lambert, in Ontario, it’s been difficult to find relevant health information.

Her cancer has always been aggressive. The 58-year-old found her first lump during a self-examination in 2008. She’d had a mammogram just six months earlier, and the mass was small, so “I didn’t really worry about it,” Ms. Lambert said. But the cancer spread so fast that doctors eventually removed her entire breast and prescribed intense chemotherapy.

Her second diagnosis was in 2013, while the most recent was late last summer. She’s long been a volunteer with the charity After Breast Cancer because, she said the day before her third surgery in October, “I have to push African women to get screened. Because they don’t.”

At TAIBU, a black-focused health centre in Scarborough, Ont., Onyenyechukwu Nnorom was often asked about breast cancer by women who came across U.S. information about their potentially increased risk. She found it frustrating to have to tell them that she didn’t have the data to know if the same is true in Canada. “With a patient who’s like, really worried and doesn’t know what to do, I try my best to kind of weigh things out based on the American information,” said Dr. Nnorom, who works as a physician at the Dalla Lana School of Public Health at the University of Toronto.

“The guidelines that all the doctors follow across Canada don’t even mention this as an issue,” said Dr. Nnorom, who is working with a research team to identify disparities that black Canadian women face with regards to breast cancer.

“We like to pretend we’re colourblind, which is very problematic, because we’re not colourblind and we’re not gender blind − we’re just blind at realizing that there is a problem and doing something about it.”

Some efforts are under way to produce more detailed information on ethnicity and cancer treatment and outcomes; this involves linking records (such as the Canadian Cancer Registry and hospital records) to the long-form census. The Canadian Partnership Against Cancer expects first-ever results on ethnicity and cancer will be released in 2020.

The most-recent federal budget committed $6.7-million over five years for Statscan to establish a centre for gender, diversity and inclusion statistics, saying the government is “committed to increase the disaggregation of various datasets by race.” Information is now posted on a central website; Statscan says the centre is running an analysis on the disaggregated population group data “to better understand the challenges of racial discrimination.”

Dr. Thomas Bernard, the senator, understands concerns that this type of data could be misused, and used to target or profile people – but says the benefits of having it outweigh the risks.

If this data is used to improve policies, programs and services − and if the community is directly involved in data collection, with the researchers themselves comprised of a diverse team, she says this effort will improve decisions and outcomes.

For the senator, this is personal. She cites an example of a close family member: a young African-Canadian man in Nova Scotia whose diagnosis of a rare form of leukemia went untreated for years. His doctor treated him for symptoms of back pain until the pain became unbearable and doctors finally shared his diagnosis. When his family later asked why he hadn’t been informed earlier, physicians told them this cancer was prevalent in older white men and that they believed he didn’t need treatment.

She believes better information could have saved his life. “Issues of race, racism, not collecting health data by race, differential treatment, marginalization and lack of access to health care were all factors in the non-treatment,” she says. “I believe that if he had early intervention, he may have survived or at the very least would have had a longer period in recovery.”

Editor’s note: (Feb. 11, 2019) An earlier version of this article incorrectly said Indigenous researchers collect health data, but it is First Nations health directors.

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