Communications and Engagement Officer,
HealthBridge Foundation of Canada
Faculty Affiliate, ISSP
Full Professor, Disease Modelling, Faculty of Science, uOttawa
Anti-Black and anti-Indigenous racism is pervasive in all aspects of our society, including the collection and application of health data. The recent, highly publicized, series of police-related deaths of Black and Indigenous individuals in North America are leading many to question why Black and Indigenous Canadians suffer and die disproportionately from police brutality. We also need to ask why marginalized and racialized groups experience high rates of poverty and medical conditions closely linked to the social determinants of health such as diabetes, heart disease and cancer and why they face barriers to accessing and benefiting from public services.
Part of the answer to these and similar questions regarding racial disparities in Canada can be found by considering the roots of anti-Black and anti-Indigenous racism upon which our country was built, the subsequent racially inequitable systems and practices that were established and preserved to present day and the lack of reparations for racialized groups. While reparations can be financial (e.g., monetary restitutions for descendants of enslaved people), they can also take the form of societal recognition of past wrongs. Ultimately, reparations seek to make amends for previous damages and injustices to either a person or group of people. Reparations can also occur in health research and public health, through the practice of collecting and presenting race-based data and the subsequent evidence-informed decision-making process to address racial disparities in health.
To work towards diminishing and ultimately eliminating systemic racism from our health research and public health systems, as well as reducing racial disparities in health, we need to fully understand the scope and severity of these issues. One of the first steps in repairing the damages of systemic racism in the context of public health involves the collection and presentation of race-based data during health crises and the recognition of the underrepresentation of racialized groups in Canada, such as Black Canadians, in health research. Race-based data allows decision-makers and the public to see how the incidence, prevalence and impacts of a given health condition or crisis differs between races, often revealing that racialized groups suffer and die disproportionately compared to their white counterparts, including because of historical wrongdoings that have created health disparities between races. Inferences from race-based data often point to systemic racism in society.
Despite the ability of race-based data to be a powerful tool in addressing systemic racism in health research and public health, collecting it is often met with hesitancy or refusal by public health decision-makers. For example, Ontario’s Chief Medical Officer of Health, Dr. David Williams, initially took the position that the collection of race-based data in Ontario during the COVID-19 pandemic was not necessary because the main high-risk groups for COVID-19 are the elderly, people with weakened immune systems and those with particular co-morbidities. He also added that, regardless of race, the Ontario government’s consideration and prioritization of high-risk groups is equal. This initial reaction from a senior public health official was problematic, reflecting the refusal of many Canadians to accept that systemic racism exists in our society and the lack of understanding of the difference between equity and equality.
While the Ontario government may claim to prioritize high-risk groups equally, as Dr. Williams stated, the effects of systemic racism in Canada (e.g., poverty, low-income and socio-economic status, inability to access and afford uninsured health care services) prevent racialized groups, such as Black and Indigenous Canadians, from benefiting from the government’s prioritization in the same way that their white counterparts do. Eventually, in June, the Ontario government proposed that all health units collect race-based data. This proposal came months after the province declared a state of emergency due to COVID-19 and only after several months of societal pressure to insist on collecting race-based data about the course of the pandemic. These data should have been collected from the beginning of the pandemic, especially after early evidence from the United States revealed that a disproportionate number of COVID-19 cases and deaths were among Black Americans. These disparities can be partially explained by a lack of access to testing and healthcare resources, precarious immigration status and pre-existing health conditions, such as higher rates of obesity and diabetes due to malnutrition and poverty. Likewise, Black and immigrant communities in Canada are disproportionately affected by COVID-19. The initial refusal to collect — or the lack of consideration of — race-based data in health research and during health crises is a form of covert systematic racism that perpetuates health disparities in our society.
Other Canadian provinces, such as British Columbia, do not collect race-based data. Federally, the Public Health Agency of Canada only collates basic demographic data, such as age and gender, on people who test positive for COVID-19. This, despite the fact that the disease disproportionately affects Black communities in similar jurisdictions, like the US. Only one of the thirteen CIHR institutes is devoted to Indigenous health; the collection of race-based data should be widespread across all research institutions, where applicable (and not compartmentalized). However, it is encouraging that CIHR is funding numerous studies that investigate discrimination during the COVID-19 pandemic.
We strongly recommend that the federal government mandates the collection and dissemination of race-based data during this and future health crises. The Canadian Institute for Health Research released proposed standards for the collection of race-based data, which is a step in the right direction towards a concerted effort of involving racialized groups in health and medical research at all levels. While several organizations have expressed their support for racialized groups through diversity and inclusion statements, they are too often performative, without making tangible changes to address racism in health research and public health. It is vital that racialized groups in Canada be recognized and considered in all health data. This is just one step in dismantling systemic racism in Canada, but it is an important one.