Why Ontario needs to collect race-based health data

While written from the perspective of Black Canadians, applies to all visible minority groups:

Statistics Canada has published mortality data for the Black population for the first time. The findings highlight the urgent need for systematic collection, analysis and use of race based data if we are going to deliver equitable health care.

Statistics Canada merged census data and death certification and reported that Black people in Canada are more likely than white people to die from HIV/AIDS, diabetes, hypertension, stroke, kidney disease, endocrine disorders and prostate, stomach and uterine cancers. 

Black men and women are five and 22 times, respectively, more likely to die from HIV/AIDS than the white population. But there was also a 10 to 70 per cent increased death rate for the Black populations compared to the white populations for other illnesses. 

For Black men, the risks of prostate cancer death were increased 30 per cent, diabetes 35 per cent and cerebrovascular disease 10 per cent. For women, there were increased risks for dying from stomach cancer (76 per cent), uterine cancer (78 per cent), and diabetes mellitus (48 per cent). 

Socio-economic factors are part of the reason for differences in death rates. But even when these are taken into account, significant disparities persist. 

Our health-care system lacks the foresight to identify those who need the most help and building services that meet their needs. We are currently witnessing efforts to move on from COVID-19, though infections persist; we have a health-worker shortage that will exacerbate problems of access to care, and this could all be made worse by a focus on privatization.

These crises affect us all. But, some will be more impacted than others and we have no way of knowing the true extent of the harm because we do not routinely collect sociodemographic data in the health system.

As of Jan. 1, all Ontario school boards were required to collect race-based data. Our health-care system should commit to the same as there is evidence that collecting race-based data is an effective tool for improving health.

A 2019 study found that Black women were under-screened for cervical cancer, which increased their risk of worse outcomes. To address this, TAIBU Community Health Centre developed a highly effective Afrocentric cancer screening program. The rates of breast, colorectal, and cervical cancer screening increased from 17 per cent to 72 per cent, 18 per cent to 67 per cent, and 59 per cent to 70 per cent, respectively. 

Without the data from research on racial health disparities, the health concerns and needs of Black communities would have been ignored.

The Black population was at higher risk of getting COVID-19 during the first year of the pandemic. One third of employed Black women worked in health or social assistance jobs compared to 22 per cent of nonvisible minorities and because the Black population has the second highest poverty rates in Canada they were more likely to be using public transit and living in crowded housing.

Because Ontario public health units collected race-based data during contact tracing in the early pandemic, health officials were able to identify that Black populations had higher rates of infection. They used this information to develop community-based strategies to decrease infection, hospitalization and death.

Sadly, Ontario public health units no longer collect race-based data systematically. Contact tracing stopped as COVID-19 rates rose and no other system of race based data was put in its place. Further, Ontario did not mandate vaccination sociodemographic data collection.

Data collection by public health across Ontario was possible when the harms of anti-Black racism were on full display in 2020, and political will and public attention spotlighted community concerns. But this was short-lived, focused only on COVID -19 infection and ended mid 2021.

Without the collection, utilization and proper governance of race-based data, our disproportionate pain and deaths go unacknowledged, unaddressed and invisible.

We cannot afford to wait for another racial justice reckoning to reach popular discourse for change to happen.

Fiqir Worku, Paul Bailey and Kwame McKenzie are members of the Black Health Equity Working Group.

Source: Why Ontario needs to collect race-based health data

About Andrew
Andrew blogs and tweets public policy issues, particularly the relationship between the political and bureaucratic levels, citizenship and multiculturalism. His latest book, Policy Arrogance or Innocent Bias, recounts his experience as a senior public servant in this area.

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