Dr. Aisha Lofters stands in the Women’s College Hospital in Toronto, on April 26.Christopher Katsarov/The Globe and Mail
Canada needs better data to prepare for its future with a rapidly aging – and increasingly diverse – population, experts warn.
Advocates have long pointed to gaps in our health care system, including inequitable access to regular care among racialized communities. But given the rapid shifts in the country’s demographics – namely, an elderly population that is not only getting larger but also increasingly diverse – the information gap takes on an added sense of urgency.
“These changes are here and now. What we need is to take action now,” said Roger Wong, a clinical professor of geriatric medicine at the University of British Columbia. “We need to be better prepared.”
Today, one in seven seniors in this country belongs to a racialized group. That figure is expected to nearly double over the coming decades, with Statistics Canada projecting that by 2041 more than one-quarter of seniors will belong to a racialized group.
As such, Canada is set to have an elderly population that will look dramatically different than those of the past. And with this, experts say, will come very different health care needs.
Earlier this year, the Alzheimer Society of Canada released a study that projected that the number of Canadians living with dementia will triple by 2050, driven in part by higher rates of the disease among Asian, African and Caribbean populations. Along with the study came a clear warning: Canada and its health care system need to act quickly to prepare.
But a major stumbling block, Dr. Wong said, is how much we still don’t know.
Nova Scotia is the only province to routinely collect race-based data as part of its health care system. Elsewhere in the country, such data is collected in various ways by a scattershot of hospitals and patient registries but is not shared system-wide. Instead, much of the data Canadian doctors rely on comes from the U.S.
The Alzheimer Society study was one of the first of its kind in Canada and was compiled with the use of big data by the Canadian Centre for Economic Analysis.
What is known, based largely on U.S. and international data, is that dementia is just one of many medical conditions known to disproportionately affect specific elderly ethnic groups.
Diabetes and stroke, for instance, are known to disproportionately affect the elderly in Asian communities. Black communities, meanwhile, suffer relatively high incidences of colorectal, pancreatic, prostate and breast cancers.
But if we don’t have Canadian data, said Aisha Lofters, a family doctor at Women’s College Hospital in Toronto, “it’s just too easy to sit there and say this isn’t a problem.”
Community groups and clinics could use such data to better target their outreach, education and screening efforts, Dr. Lofters and Dr. Wong said. Family doctors and long-term care centres could use it to better understand patients and deliver culturally appropriate care.
And, crucially, policy makers could use the data to make informed decisions about how and where to allocate healthcare funding – which communities, for instance, are most in need of new doctors or hospital beds.
Part of the reluctance to collect such data, Dr. Wong said, is a lack of precedent: Canada has never collected such data, so there are questions around who would collect it and how. There are also privacy issues, such as how the information might be shared. One concern is that the data could be used to further stigmatize racialized groups.
But part of the reluctance, too, is a historical discomfort with talking about race in Canada, Dr. Lofters said.
She runs a program at WCH in Toronto aimed at improving access to breast and cervical cancer screening for Black women – diseases that disproportionately affect that group, especially with age.
“For many years, I think there was a narrative that ‘we don’t want to break things down like that here, because we treat everyone the same, and everyone’s equal,’ ” Dr. Lofters said. But she hopes that most people now recognize that racial differences matter when it comes to health outcomes.
“We can either recognize it, and explicitly measure and acknowledge it, or we can just kind of turn a blind eye.”
Since 2018, Andrew Pinto and his team at Upstream Lab at the University of Toronto have been working on a tool called SPARK, a list of standardized questions designed for primary caregivers to collect information from patients, including race and ethnicity. Dr. Pinto hopes the questionnaire becomes standard in health care settings across the country.
It also includes socioeconomic questions – about income, education, disability status, housing, food security – recognizing that race and ethnicity are just part of the many factors that influence a person’s health outcomes.
“We all come from different cultures, with different ways of relating to health providers, and have different needs,” Dr. Pinto said.
“By asking these questions, we can get a better understanding of what people need.”
Editor’s note: This story has been updated to correct Dr. Aisha Lofters’s place of employment.