Proponents are pushing for race-based data collection through health maps to address inequities
All Canadian jurisdictions should routinely collect racial and Indigenous identity data to address health care inequalities, and the best way to do that is during the health card application or renewal process, a group of experts say.
Dr. Andrew Pinto, the lead author of the commentary published Monday in the Canadian Medical Association Journal, said black and Indigenous patients have less access to care and worse outcomes, but voluntarily providing them with identity information could help detect racism in the health care system. system. He said it would also help monitor any progress made in addressing stereotypes that lead to poorer care for some people.
“It creates a basis for saying, ‘We need to close these gaps and develop tailored programs and services,'” said Pinto, founder of the nonprofit Upstream Lab, based at the MAP Center for Urban Health Solutions at St. Toronto’s Michael’s Hospital.
“In Canada, we just miss that data in many, many ways.”
Many racialized communities, which have higher rates of some chronic diseases, including diabetes, heart disease and certain cancers, have called for race-based data to understand contributing factors such as poverty.
Last fall, Nova Scotia became the first province to begin collecting race-based data with input from groups such as the Health Association of African Canadians, the United African Canadian Women’s Association and the Iranian Cultural Association of Nova Scotia. Residents can provide the information when enrolling for a provincial health card or upon four-year renewal. Nova Scotia’s Department of Health and Welfare said residents can also provide the data at any time as part of the county’s Fair Care Project.
Pinto said collecting that data in a universal way rather than asking for it repeatedly when patients access health care would be part of a standardized and consistent approach.
It may also be inappropriate to ask for that information when a patient is in pain in an emergency room, the commentary notes, and organizations that collect such data often ask a small subset of patients.
The comment suggests asking people about race and Indigenous identity in a “secure and transparent way”, providing anti-racism training to those collecting the data and ensuring that information is not used in any way to reinforce racism and discrimination. The authors also say that race and Indigenous identity should not be visible on patients’ health cards.
Manitoba also began collecting data on race, ethnicity and Indigenous identity in May by asking for that information when patients sign up for care at a hospital.
That was considered the fastest and most effective way to get the data, after discussions with Manitoba’s First Nations Health and Social Secretariat and the Manitoba Inuit Association, a spokeswoman for Shared Health, the provincial health organization, said.
Manitoba is one of the provinces where health cards do not expire.
The Canadian Institute for Health Information (CIHI) has guidelines for standards for the collection of race-based and Indigenous identity data by provinces and territories. It said in a report last year that governments should establish data governance agreements with Indigenous groups and involve them in devising culturally safe ways to provide that information.
The report says the standard was modified by the Ontario government’s anti-racism directorate as a way to identify and monitor systemic racism in the public sector. It includes racial categories that avoid ethnicity, so that someone who is Korean, for example, would choose “East Asian” and people of Afghan, Iranian, or Lebanese descent would choose “Middle Eastern” to identify their race. Some other categories are Indigenous, South Asian, and White for people of European descent.
Groups in British Columbia have called for race-based data collection following multiple overdose deaths of young South Asians, including international students.
Data on the exact number of those deaths is not available in reports from the BC Coroners Service, which tracks fatalities from toxic substances with statistics such as age, gender and municipality.
However, the county does not collect data on race to gauge any interventions in communities that may already be stigmatized when it comes to drug use.
Kulpreet Singh, founder of the South Asian Mental Health Alliance, said last fall his group provided feedback to a standing health committee on the need for disaggregated race-based data to help people struggling with addiction during the ongoing toxic drug crisis.
It said in a report released last November that stigma could be exacerbated by other prejudices against newcomers to Canada and deter people from seeking medical help.
“If a particular demographic or segment of a demographic is disproportionately affected by a particular health problem, then we should be able to intervene. We should have the data,” Singh said in an interview. “This is what other organizations do. They use data to substantiate their actions. But it is surprising why the government cannot do the same.”
British Columbia has launched a survey to help identify systemic racism in government services in general.
“We have heard from many Indigenous peoples and racialized groups that they are being abandoned because government services were not designed with them in mind. That is why we continue the work to create a more equitable county,” said Lisa Beare, minister of civil services, said in a press release last week. The survey will be open until the end of September.
Singh, however, called the survey a delaying tactic that shirks accountability after multiple committees and consultations gauge barriers to equitable care.
“We know the impact systemic racism has on marginalized communities in Canada, which is why we’re not at a stage right now where we need to conduct more investigations.”
Both Pinto and Singh said racialized communities are open to answering questions about race and relying on rationale for collecting that information, some of which helped target needed resources during the COVID-19 pandemic.
“The disadvantages of not collecting the data far outweigh the disadvantages of collecting it,” Singh said.
This report from The Canadian Press was first published on June 26, 2023
Canadian Press health coverage is supported by a partnership with the Canadian Medical Association. CP is solely responsible for this content.
