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B.C. woman wants racial data used in health care, cites treatment problems

Health researchers say the lack of race and Indigeneity data in Canada makes it impossible to properly identify racial health disparities
Dominique Jacobs with her daughter outside Victoria City Hall during a Black Lives Matter rally. Photograph By LAUREL MCLEAN

Whenever Dominique Jacobs sought help for the chronic pain in her hands and feet, she braced herself for the racial stereotyping she believes has long compromised her medical care.

The Colwood single mother, who is Black, is sharing her experiences within the health-care sector as she calls for the collection of medical race-based data in Canada and mandatory anti-racism training for all health-care professionals.

Health researchers say the lack of race and Indigeneity data in Canada makes it impossible to properly identify racial health disparities, which is why the B.C. and federal governments are discussing how race-based data could be used to determine which populations are more vulnerable to the novel coronavirus.

“Why aren’t our lives and our health care and our data and our experiences meaningful enough to record?” asked Jacobs, who works for the Victoria-based Support Network for Indigenous Women and Women of Colour. “That makes me angry that there’s no data. What are we, are we invisible? Don’t we exist?”

Unlike the United States, Canada does not routinely collect race or ethnicity data in the health-care system, the labour market or education, making it difficult to see who is being left behind.

This dearth of data earned Canada a rebuke from the United Nations Human Rights Council which, in a 2017 report on anti-Black racism, urged Canada to begin the nationwide collection of data by race, colour, ethnic background, national origin and other identities “to determine if and where racial disparities exist for African Canadians so as to address them accordingly.”

In an interview with the Times Colonist, Jacobs said she was referred to a musculoskeletal specialist after telling her general practitioner about debilitating pain in her hands and feet, which makes it hard to walk, exercise, type or hold a phone,

When the 42-year-old saw the specialist in 2019, she said the doctor hardly asked her any questions about her pain. After watching her walk barefoot, the doctor said she had flat, broad feet, which, Jacobs said, is a stereotype about African people. She told him her feet actually have high arches that require special insoles.

The doctor then told her she had a “genetic predisposition” to a host of diseases such as rheumatoid arthritis and sickle cell anemia.

Jacobs said if the doctor had asked her about her genetic background, she would have told him that she’s mixed race from Cape Town, South Africa. Based on an online DNA genetic testing kit, Jacobs said, her family’s heritage is predominantly Khoisan, a nomadic tribe along the southernmost tip of Africa, and Malaysian.

“He could not stop talking about my genetics, yet he did not ask me one single question about my genetics,” she said.

After Jacobs’s daughter was born by cesarean section at Victoria General Hospital in July 2016, doctors left a staple in her abdomen, which caused hemorrhaging. She also suffered an infection after the incision for her breast reduction surgery at Royal Jubilee Hospital in November was not completely stitched up.

“I have a hole where my skin should have been closed and it seems the pain in my right breast is due to infection because she didn’t take the time to stitch me up properly,” she said.

Jacobs said she can’t determine whether the surgical missteps happened due to her race, but she believes that as a result of systemic racism in the health-care system, doctors and nurses are not giving her the same level of care as a white patient.

A 2016 report by the College of Family Physicians of Canada and Indigenous Physicians Association of Canada found that for some racial groups, particularly Indigenous people, systemic racism manifests in the form of erroneous assumptions, often based on negative stereotypes, regarding patient health behaviours or diagnoses.

“It’s the lack of concern, the lack of care, the lack of time,” Jacobs said. “These things compound. It’s not just one isolated incident.”

This lack of care, she said, sends the message that “brown and Black bodies are discardable. Our voices don’t matter. Our bodies don’t matter.”

Arjumand Siddiqi, Canada Research Chair in population health equity, doesn’t have a clear answer as to why the Canadian government has been reluctant to routinely collect race and ethnicity data, but the consequence is a lack of accountability in addressing racial disparities in all sectors of society.

“[If such data was collected] we would have to contend with this fact about our society, the fact that social resources, jobs, education, health are unequal by race,” said Siddiqi, an associate professor at the University of Toronto’s Dalla Lana School of Public Health. “It means if we are discriminating against Black people or other racialized people, the system is getting away with it because we don’t know, we don’t have any basis to assert what’s happening.”

Race and ethnicity data are collected by Statistics Canada through the census every five years and through the annual Canadian Community Health Survey, which asks 100,000 Canadians about their age, income, race, job status, health situation and access to health care.

“That’s the kind of survey data we’ve been using to try to get some idea of the general health differences between racial groups in Canada,” Siddiqi said, but the data is limiting because in a sample of 100,000 people, the number of non-white people is typically very small.

Siddiqi said different health outcomes based on race are largely based on socioeconomic conditions rather than racial differences in genes, which are negligible.

“Doctors do sometimes assume that people of colour are more unhealthy because they are genetically predisposed to certain conditions,” Siddiqi said.

However, structural racism creates differences in life experiences that can make people sick or healthy, she said. For example, a lack of stable housing, working multiple jobs, constantly dealing with financial stress and a lack of disposable income for vacations can all influence one’s physical health, Siddiqi said.

Black women in the U.S. are three to four times more likely to die from pregnancy-related complications than white women, according to the Centers for Disease Control and Prevention.

Canada does not have similar national race-based data, but a 2015 study by researchers at McGill University found Black women in Canada have substantially higher rates of premature births than white women. The researchers found that socioeconomic conditions are important predictors of preterm birth and that Black communities in Canada have higher unemployment rates and a greater likelihood of living in low-quality neighbourhoods compared with white populations.

Claire Campbell, a Black mixed-race doula who specializes in birth and postpartum care for Black and Indigenous women and women of colour, said the compounding effects of racism can cause stress on the body, which can lead to higher rates of pre-eclampsia, a high-risk pregnancy condition characterized by high blood pressure, or heart disease.

Women of colour are more likely to be a single parent and have a higher chance of having social services involvement, particularly Indigenous women, Campbell said. The National Inquiry into Missing and Murdered Indigenous Women and Girls recommended an immediate stop to birth alerts — when social services are notified that a “high-risk” woman is about to deliver a baby. This could lead to a baby being taken from the mother in the hospital.

People who experience overt racism and medical malpractice are less likely to report it out of fear it could further degrade the quality of their health care in the future, she said.

The B.C. government has appointed former judge Mary Ellen Turpel-Lafond to investigate allegations of overt and systemic racism in the health-care system, sparked by allegations that medical staff in hospital emergency rooms were trying to guess the blood alcohol level of Indigenous patients.

Indigenous groups have said First Nations, Inuit and Métis patients who go to emergency rooms are often assumed to be intoxicated which results in poorer health outcomes, including death.

This month, Canada’s federal, provincial and territorial human rights commissioners called on the federal government to develop and implement a national strategy for the collection of disaggregated health data focused on race and Indigeneity.

“‘Colour-blind’ approaches to health only serve to worsen health outcomes for Black, Indigenous and racialized people because we can’t address what we can’t see,” Kasari Govender, B.C.’s human rights commissioner, said in a statement.

Federal Health Minister Patty Hajdu said last week that more detailed data, including race-based data, is needed to track how vulnerable certain populations are to the COVID-19 and where to focus efforts on testing and tracing.

Raced-based data, including whether those being tested for COVID-19 have self-identified as First Nations, Inuit or Métis, has not been available at the federal level in part because not all provinces and territories have been collecting that information. B.C. does not collect data on race and ethnicity but Premier John Horgan said he supports the collection of such data to help inform government policy.

Federal officials are working on national standards for health data collection — and ensuring information is shared quickly with Ottawa — as part of ongoing negotiations with the provinces over $14 billion in new federal COVID-19 transfers.

— With files from The Canadian Press

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