Two weeks ago, the Ontario Human Rights Commission (OHRC) wrote Ontario’s health minister encouraging her to mandate the collection and reporting of demographic data critical to effectively addressing the COVID-19 pandemic. This was nearly three years after the OHRC urged the government to require health care agencies to collect, analyze and report on race data under the Anti-Racism Act.
Last week, Ontario’s Premier and Chief Medical Officer of Health both publicly confirmed that the province is not collecting race data. More troublingly, both questioned the importance of it and suggested that race data was not necessary from a public health perspective.
There can be no debate on this issue. Human rights and public health experts agree that collecting demographic data, including race, socio-economic status and disability, along with sex and age, is the foundation of evidence-informed decision-making. Demographic data collection is a best-practice.
Strong data allows health care leaders to identify populations at heightened risk of infection or transmission, to efficiently deploy scarce health resources, and to ensure equal access to public health protections for all Ontarians. If one segment of Ontario’s population is overlooked as we fight to flatten the curve, we risk prolonging the pandemic or triggering its resurgence.
Unfortunately, unlike many other jurisdictions, Ontario decided not to mandate robust demographic data in the healthcare sector. This decision must be quickly and definitively reversed. Linking identity data – including race, socio-economic status and disability – to provincial health insurance (like OHIP) would allow system-wide analysis of disparate health outcomes. While it would not account for some vulnerable, uninsured groups, it would be a vast improvement on the status quo.
Perfection cannot be the enemy of progress, especially in these unprecedented times. Given that it would take many years to roll out an ambitious, albeit necessary, system-wide initiative, the OHRC encourages all levels of government to follow the lead of Toronto Public Health and pilot short-term data collection initiatives during the current emergency.
This can include demographic data collection during testing, when positive tests are reported by local public health units, during admissions to hospital or intensive care, and/or when the province reports COVID-19 deaths. The government must also collect data to quickly identify and address potential racial or social profiling when enforcing emergency and public health orders.
Historically marginalized groups are rightly skeptical of identity-blind health policies. Canada has a poor track record when it comes to protecting historically-disadvantaged groups from infectious diseases. In the nineteenth century, Indigenous peoples had the highest death rate from tuberculosis reported in any human population, largely due to systemically racist policies. Inuit communities continue to have extremely high rates of tuberculosis today. More recently Ontario researchers established that ethnicity was a risk factor during the 2009 H1N1 pandemic.
During COVID-19 we have already heard troubling accounts from people in shelters, mental health institutions and jails, people with disabilities and addictions, Indigenous and racialized people, people without secure housing, and essential service workers in precarious or low-income jobs.
A head-in-the-sand approach is not an answer to concerns about disparities in health outcomes, and does not absolve the government of its responsibility to address potential systemic discrimination in how it manages the COVID-19 pandemic. Without solid Ontario data to work with, the government must recognize data from comparable jurisdictions, including the United States, which shows, for example, that Black people among others are disproportionately dying from COVID-19. Looking to this data for guidance, Ontario must adopt action plans for vulnerable groups that include aggressive screening and testing.
The OHRC is encouraged by the government’s new health data platform and its action plan for long-term care residents. Similar plans should be put in place for other vulnerable groups. These plans should be developed with public health and human rights experts, frontline workers and people with lived experience. Action plans should prioritize public health measures over law enforcement.
So far Ontarians are supportive of the government’s management of the COVID-19 pandemic. All levels of government have been transparent, have followed the advice of experts and have implemented thoughtful measures to protect vulnerable groups. As a direct result, Ontario has begun to flatten the curve. Ontarians continue to support a balanced and compassionate approach. The OHRC encourages the government to once again heed the advice of health and human rights experts who agree that Ontario needs demographic data to effectively fight COVID-19.