Canadian Experts Call for Collecting Race and Ethnicity Data

A new commentary encourages the collection of information on race and Indigenous identity across Canada during health card renewal to help address inequities in health care.

The statement suggests that the data could be beneficial for reducing racial disparities if used thoughtfully. However, the authors also advise caution and lay out several important considerations, including maintaining data governance and engagement with racialized communities, to help reduce the potential harm of improperly collecting the data.

"Data is never really the end goal. It's really about the action that flows from that data," lead author Andrew Pinto, PhD, director of nonprofit laboratory Upstream Lab and associate professor of public health at the University of Toronto, told Medscape Medical News.

The commentary was published today in the Canadian Medical Association Journal.

Accountability in Data

Dr Andrew Pinto

While race is not biologically grounded, but socially constructed, it is important to acknowledge that racism exists in the Canadian health system, and that patients may be treated differently based on their racial or Indigenous identity, said Pinto. In Canada, however, health systems do not collect data on racial disparities in healthcare systematically.

Collecting self-reported information about race during health card application and renewal would allow for an efficient and centralized gathering of data that are nearly universal, except for the exclusion of undocumented Canadian residents and refugees. The strategy also would provide a more appropriate environment to ask for such information, compared with urgent contexts like emergency hospital visits, the authors suggest.

Once the data are collected, the authors anticipate the following three main benefits: measuring health outcomes in various racial groups; determining progress in efforts to reduce inequities; and holding governments and organizations accountable.

Data collection is a first step toward these goals, but the actions that follow are essential, said Pinto. Rather than simply changing a form, he said, it's important to engage communities in interpreting the data to spur progress.

The authors were motivated to write their commentary after hearing clinician accounts of patient experiences, hearing calls for accountability from community leaders, and reading research done at organizations like Upstream Lab, the nonprofit research lab in Toronto that Pinto founded.

Sovereignty and Engagement

Before embarking on systematic data collection, several preconditions must be considered, the authors state. Pinto cautioned that government organizations should not implement this type of program lightly, given these concerns.

They recommend the following five main steps: ensuring sensitive collection of data with transparent explanations of how it will be used; avoiding misinterpreting data in a way that reinforces discrimination; preventing further bias by not including race information on health cards; protecting data governance and sovereignty; and supporting Indigenous and racialized communities in efforts to lead the data collection and analysis.

Ensuring that communities are in control of the data and engaged in the interpretation is a key consideration, according to Pinto. Data governance is a particularly salient concern for Indigenous communities, for whom it's important to maintain sovereignty of their health systems. In the northwest, some data collection has already begun with programs like one led by the Institute for Clinical Evaluative Sciences (ICES), a health administrative program in Ontario.

"At the surface level, it seems straightforward. Why not just add a couple of questions on a health card renewal form? But when one digs into the implications of it and what could happen if done poorly, then it becomes more complex," said Pinto.

Building Trust

Before the data collection begins, it will take time to apply the high-level recommendations proposed in the commentary and build the necessary trust with Indigenous and racialized communities, Jennifer Walker, PhD, associate professor of health research methods, evidence, and impact at McMaster University in Hamilton, Ontario, and scientist for ICES, told Medscape.

Dr Jennifer Walker

"We're bound to make mistakes and we're bound to do things that have unintended effects" when working within colonial institutions, said Walker. "If there's a solid, trusting, collaborative relationship underneath the work, then we can work through those things."

From her experience with ICES, Walker said that there is a diversity of ideas about governance among Indigenous communities. In addition to the formal political organizations, grassroots organizations have developed governance systems.

Walker also noted that policymakers should understand the current landscape of Indigenous efforts on data governance, such as those by the First Nations Information Governance Center and similar strategies signed by the Inuit and Métis Nations. She said that without this awareness, there is a risk of imposing and interfering with initiatives that Indigenous organizations are already leading.

Ultimately, rather than shining a light on the inequities themselves, Walker said it is important to use these data to illuminate a path forward and focus on improving health outcomes.

The commentary was supported in part by the Canadian Institutes of Health Research. Pinto is the founder of Upstream Lab. Walker has previously received grant funding with a co-author of the commentary, Angela Mashford-Pringle.

CMAJ. Published June 26, 2023. Full text

Gwendolyn Rak is a health reporter for Medscape and Univadis based in Brooklyn, New York.

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