A virus may not discriminate on its own, but systemic inequities mean that COVID-19 has disproportionately impacted racialized groups. Data from the United States and the United Kingdom show higher rates of negative health outcomes and deaths related to COVID-19 among Black populations, due in part to the compounding effects of anti-Black racism and its subsequent impact on the social determinants of health.
As the pandemic continues, there is substantial interest in better understanding its spread and impact, particularly within racialized communities. However, a relative dearth of data on race makes it difficult to monitor health inequities in the Canadian health care system.
Health equity is the absence of unjust, avoidable differences in health care quality and access across different subpopulations. To effectively monitor health inequities, two types of data need to come together: data about health and health care, and data about patient demographics. Gaps in this data can mask and perpetuate negative health impacts; if issues within the health care system cannot be seen, they cannot be fixed.
Despite growing awareness in the importance of collecting race-based data, it is not collected in a routine and/or standard way across Canadian health and clinical databases. The Canadian Institute for Health Information (CIHI) has done considerable research, review and consultation around race-based and Indigenous identity data within Canada and the global community. From this work, CIHI has released proposed standards for race-based and Indigenous identity data as a means of measuring and addressing racial inequalities within the health care system that may stem from racism. This interim standard leverages SNOMED CT as the underlying code system to promote interoperability.
While pan-Canadian standards can help ensure that high-quality data is collected, analyzed and reported, additional measures are needed to enhance cultural safety and facilitate consent and appropriate use. In particular, community engagement is necessary to help analyze data and develop solutions. As part of health equity — and in the context of historical and ongoing racism — it is vital that communities have ownership over the telling of their own stories.
Special consideration must also be taken when collecting data for Indigenous patients. It is recommended that Indigenous identity be collected independently from race to accommodate the ways in which Indigenous people self-identify, which may include an individual’s clan, community, nationhood and/or language family. Furthermore, we recommend considering a distinctions-based approach that includes response categories for First Nations, Inuit, and Metis identity. In addition, Indigenous communities have inherent and collective rights to self-determination, including ownership and governance of data. In all cases, data collection and measurement must include engagement with Indigenous communities.
In the coming months, CIHI will continue this work on race-based and Indigenous identity data and the measurement of racial health inequalities. Feedback is highly welcome — good solutions can arise only from good data.
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Katie Bryski serves as Coordinator for Marketing and Engagement at Canada Health Infoway. She is particularly interested in how digital health relates to intersectionality.
Dana Riley is a Program Lead with the Canadian Population Health Initiative team at the Canadian Institute for Health Information. During her time at CIHI, Dana has made important contributions to a variety of products and reports, including Improving Health System Efficiency: Perspectives of Decision Makers, Alcohol Harm in Canada, In Pursuit of Health Equity: Defining Stratifiers for Measuring Health Inequality, as well as the Measuring Health Inequalities: A Toolkit. Previously, she was a post-doctoral fellow at the University of Ottawa’s Institute for Population Health.