Electronic Thesis and Dissertation Repository

Thesis Format

Monograph

Degree

Master of Health Information Science

Program

Health Information Science

Supervisor

Kothari, Anita

2nd Supervisor

Locklear, Sofia

Affiliation

University of Toronto

Abstract

There are disparities in the health outcomes of minority populations compared with those of the majority in Canada. Unfortunately, no detailed and representative population-level data document these disparities except for Indigenous populations. This data gap is partly due to a lack of consensus on race and ethnicity data collection standards in healthcare. This scoping review identified and synthesized evidence from frameworks for collecting patient race and ethnicity information in health settings in the US and Canada.

Twenty-three articles met the inclusion criteria. The results show limited stakeholder engagement for many of the frameworks during the development process, and the data collected using most of these frameworks were not incorporated into electronic records. The frameworks originating in Canada lacked a common reference point for racial and ethnic categories, and many of them do not collect ethnicity information. These findings are crucial considerations for governments and healthcare leaders to successfully collect, manage, aggregate, and use race and ethnicity data to address health inequities in Canada.

Summary for Lay Audience

Due to immigration, Canada is fast becoming a vast multiracial and multiethnic society, and populations other than the White majority have poorer health outcomes. Data to show the extent of these disparities is largely unavailable except for Indigenous populations. Further, data on race and ethnicity is not typically collected within Canada's health system. This gap in data availability is attributed partly to the lack of a standardized approach to data collection.

This study identified and reviewed frameworks for collecting patient race and ethnicity information in hospitals, clinics, and public health settings in the US and Canada. The findings from the review showed that, unlike the US frameworks, the Canadian ones lack a common reference point for racial and ethnic categories, and many of them do not collect ethnicity information. Further, during the development process, many of the frameworks did not engage stakeholders and those that did involved them in limited ways.

These findings provide a basis for consolidating race and ethnicity data collection practices and evidence for advocating to Canadian governments and healthcare leaders to standardize data collection practices within the health system. Finally, information on race and ethnicity is critical for improving population health outcomes and addressing health disparities in Canada because it facilitates evidence-based decision-making for healthcare leaders.

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