opinion: we can’t build a truly universal healthcare system without race-based health data
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the absence of race-based health data affects care across the life course, from mental health services for black youth, to delayed cancer diagnosis, to chronic disease management later in life.
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this piece was written for the centre for global social policy’s opinion piece project, with funding from the social sciences and humanities research council and the canada research chairs. neither sshrc nor canada research chairs had any editorial input in this article. visit cgsp-cpsm.ca for more information.
canada prides itself on creating “evidence-based” policies, a principle embedded in the mandates of federal institutions such as statistics canada and the public health agency of canada. however, evidence can only guide policy if it accurately reflects people’s lives—and across canada’s healthcare system, it often does not.
that’s because canada does not consistently require health institutions to report outcomes by race, even though there has been national work to make this possible. the canadian institute for health information (cihi) released pan-canadian standards in 2022 for the collection and reporting of race-based and indigenous identity data in health systems. these sets of guidelines were developed in collaboration with community and health partners, and were intended to support consistent and ethical data collection.
however, because there is no mandatory enforcement of the standards, many healthcare settings still do not collect data or report on key equity indicators. this limits our ability to understand and address health inequities. maternal health provides one of the clearest examples of how these data gaps translate to inequitable health outcomes. in this area, there is still no national tracking on maternal complications, postpartum health, or overall patient experiences disaggregated by race—even though research presented to the government has clearly demonstrated the link between systemic racism and an absence of race-based data collection.
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absence of race-based health data affects lifelong care
the problem extends far beyond pregnancy and childbirth. the absence of race-based health data affects care across the life course, from mental health services for black youth, to delayed cancer diagnosis, to chronic disease management later in life. in each case, the same pattern repeats: when inequities are not measured, they are not addressed.
the erasure of an entire segment of the population from the knowledge systems that shape policy is a form of what scholars call epistemic violence. this is not just an issue for black communities. indigenous peoples have long challenged data systems that erased their realities and undermined self-determination, as reflected in calls for indigenous data sovereignty and ocap principles, while other racialized communities have faced similar exclusion within health reporting.
however, epistemic violence in maternal health data does not only harm marginalized communities—it weakens the entire healthcare system.
without accurate maternal health data, hospitals cannot anticipate demand or properly allocate resources where they are most needed; policymakers cannot identify emerging risks or evaluate whether interventions are working. over time, these blind spots weaken patient safety for everyone, and strain already stretched services.
in other words, cannot deliver on the promise of equitable, universal health care without race-based data. under international human rights standards, including the right to health, governments are expected to identify and address patterns of exclusions and address systemic barriers to receiving adequate healthcare services. when race-based health inequities are not measured, they cannot be remedied, leaving canada unable to meet its own commitments to fairness, accountability and equal access within the healthcare system.
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call to adopt anti-racist approach for health equity
to improve our healthcare system, policymakers must adopt an anti-racist, decolonial approach to health data across the life course. this begins with collecting race- and gender-disaggregated data consistently across provinces and care settings, publishing that data transparently, and tying health system performance indicators to equity outcomes. it also requires training healthcare providers and decision-makers to understand how racism shapes patient experiences, trust and quality of care. without these foundations, inequities remain visible in principle but unaddressed in practice.
but data collection alone is not enough. an anti-racist, decolonial approach to data asks deeper questions about power and control. who decides what data is collected? who interprets the results? and who ultimately benefits from the information? too often, communities most affected by inequities are treated as sources of data rather than partners in decision-making.
in practice, this means involving black, indigenous, and other racialized patients, caregivers, community leaders and researchers in defining priority indicators across the healthcare system. it also means funding community-led health research and ensuring data governance structures give communities real decision-making power over how information is used. crucially, it means recognizing lived experience as legitimate evidence, rather than dismissing it as anecdotal.
implementing such a model does not require starting from scratch. national guidance already exists through the cihi. these guidelines address core implementation questions such as when and how to ask about race and identity, how to ensure informed consent, how to protect privacy, and how data should be governed and used to advance equity. the challenge is not the lack of direction, but that the cihi’s standards are voluntary and as such we have uneven adoption across provinces.
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policymakers should take note: a 2025 survey found that nearly all canadians (89 per cent) believe that improving access to our universal health system is key to building a stronger country. that expectation cannot be met without the data needed to understand who is being underserved and why. adopting an anti-racist, decolonial approach to health data is not about creating special treatment for some, but about strengthening the system’s ability to deliver on its promise of universality. when inequities are measured and addressed, healthcare becomes more responsive, more efficient and more trustworthy, not just for bipoc communities, but for everyone.
sylvia okonofua is the founder and executive director of black donors save lives, a national nonprofit organization working to close the gap in access to lifesaving blood, stem cell, organ, and tissue donations for african, caribbean, and black communities across canada.
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