Canada’s universal healthcare is something that is often celebrated around the world, but some question if this is a system that treats everyone, particularly racialized communities, equally.
Serena Thompson was diagnosed with sickle cell disorder at birth. It’s a genetic condition that occurs in people of African, Arabic and Indian racial backgrounds. It’s common for those diagnosed to experience pain attacks without warning, described to be worse than childbirth.
For Thompson, who is 45-years-old, it means getting hospitalized and sometimes treated with powerful painkillers. During a crisis like this, her biggest worry isn’t how she’s feeling, but if she’s going to get treated.
“The first thing that comes to mind, is I’m looking a mess. Let me put myself together so at least I can look presentable, so I can look in a way that they would want to deal with me,” said the mother of one.
“If they’re not aware of the disease, the first thing they see is ‘oh it’s a black person, and oh they just want drugs.’ That’s the main thing that’s been going on for decades.”
Experts in Toronto say Thompson’s experiences aren’t rare, similar experiences have been reported in the U.S. and in Canada, including in a recent provincial publication. The Clinical Handbook for Sickle Cell Disease Vaso-occlusive Crisis was released by the Provincial Council for Maternal and Child Health, along with the Ministry of Health and Long-Term Care back in December. The report detailed the challenges faced by SCD patients when seeking medical treatment at hospitals.
“Clinicians and administrators recognize that racism towards patients with SCD does exist and must be addressed,” the report read.
The handbook also featured a series of comments from focus groups that detailed people’s experiences. They touched on everything from long-wait times to provider knowledge and attitudes, which was identified as one of the barriers to care.
“My brother was 33 years old when he went to the ER with a crisis, they saw a black male and told him he was looking for drugs not having a crisis. Despite the comment they gave him 40 dilaudid and sent him home,” one comment read.
“My aunt called in the morning and told me not to come. They found him dead.”
Public Health specialist Dr. Onye Nnorom said there’s a standard of care for sickle cell patients to be treated within 30 minutes of arriving to the emergency department, and delays in treatments can have severe consequences on health.
“It’s standard of care to provide narcotics in those situations, and so we do see this with black patients,” said Dr. Nnorom, who is also the Black Health Theme Lead at the University of Toronto’s Faculty of Medicine.
“I can say with my own research and own clinical practice, I don’t hear these types of repots with non-black patients, but in particular with the white Canadian population of having when you’re in excruciating pain dress a certain way to be treated equitably.”
The Ontario government says racial inequalities in the healthcare sector are most often indirect, subtle and systemic, but up-to-date data on discrimination in the sector isn’t readily available in Canada.
In addressing unconscious biases, Dr. Nnorom said we must understand that people aren’t doing it intentionally so it can sometimes be difficult to change.
“There are things hospitals can do with regards to policies and practices to start to undo these systemic issues that end up playing out as unconscious bias,” she said.
The College of Family Physicians of Canada
The College of Family Physicians of Canada created a social accountability working group to tackle unconscious biases — providing education and training to physicians and healthcare providers to shift the culture towards social accountability.
“There has been attention now to understand that the unconscious biases exist, they are real and there’s something we can do about it,” said Dr. Ritika Goel, chair of the Social Accountability Working Group.
The group is also focused on finding strategies in advocating for the equitable outcomes of “vulnerable groups.”
“From research that’s been done for example, we know women, people who are black or Latino that present to the emergency room are more likely not to have their pain addressed,” explained Dr. Goel.
“So for example the same amount of pain they present with, might get less pain medication or may not get addressed as quickly.”
Mount Sinai Hospital Leading the way
Just last year, Mount Sinai Hospital held a symposium and released the “Black Experiences in Healthcare“, which identified and raised awareness on health inequities faced by black Ontarians in Toronto. That includes lack of access to healthcare services, gaps in care and inequalities in health outcomes. The organizers said this was a tool to illicit greater accountability in the province.
The hospital is also leading the way in, what some describe to be, a ground-breaking project. In 2012, the Toronto Central Local Health Integration Network, also known as the Toronto Central LHIN, mandated health-care organizations to collect patient demographic data in an effort to tackle health equity across the system.
Since 2013, 16 hospitals and 16 community health centres were required to hand out voluntary questionnaires to clients. The surveys asked about their races, ethnicities, salary and sexual orientation, amongst other things.
“We are in a moment where everybody in the healthcare system is using the language of healthcare equity, and this initiative is saying if you’re going to use the language of health equity then we need to have evidence that speaks specifically to health disparities,” said Angela Robertson, executive director of Parkdale Queen West Community Health Centre.
“Having this data really can enable us to produce evidence that says here are the sights of inequalities.”
As of 2017, over 435,000 clients have responded to the voluntary questionnaires and health facilities say they’re already benefiting from the data collected. Parkdale Queen West Community Health Centre, for instance, has learned more about cancer screenings at their clinic.
Women’s Health in Women’s Hands Community Health Centre has also been collecting its own data in the 25 years it’s been serving racialized women in the GTA. The Centre’s executive director, Notisha Massaquoi, said their data shows, on average, black women go see a doctor when the effects of their chronic illnesses were in advanced stages. Illnesses such as HIV and diabetes, and mental health concerns were also expressed.
Robertson said it’s still too early to tell whether or not the data has identified racial biases in the healthcare system, but anecdotal stories like Serena Thompson’s are extremely telling.
“Canada’s history of multiculturalism has made it not as responsive to naming race and racism,” Robertson stated.
“As a result, Canada, I would say, lags behind even the U.S., around collecting raced based data and talking about the impact of racism In accessing health care, in health outcomes, in measuring quality of care receives, by racialized black and indigenous people.”
Calls on Canada and Ontario to Collect Race-Based Data
The collection of race-based data has long been a controversial practice in parts of Canada, because historically it’s been sometimes used against minorities.
However, medical experts say through their experiences, once patients and clients understand the need for data collection, they’re more willing to participate.
The Ministry of Health and Long-Term Care said race-based data is not systematically collected across Ontario.
However, on Monday the province announced plans to start collecting race-based data in the child welfare, education and justice sectors over five years- it is not clear yet if that will also include the health sector.
American studies have long highlighted the healthcare inequities and social detriments in their healthcare system, identifying barriers through data collection. Experts here north of the border say Canada doesn’t do the same, and that’s a problem here.
“That is a racial bias,” said Massaquoi.
“You’re not concerned about the healthcare of every individual, you just want to make general statements.”
The Ministry said there is research on Indigenous and racialized communities that has been completed in the past.
The country’s Indigenous population is said to face some of the worst health prospects in the province, including prevalence of diabetes. While Black Canadians are disproportionately affected by HIV/AIDS, mental health issues, heart disease, and strokes. That community, along with South Asian groups also have the highest rates of diabetes.
“Rolling all this data up to the policy level is what’s going to ensure resources flow to the appropriate place,” Massaquoi said, adding racial biases can be seen in the poor outcomes of particular groups.
Robertson also added that racialized groups are also under-represented in medical studies, and there is a real push for researchers to be more inclusive in their studies.