Edmonton’s Race-based Data Table: A municipal approach to addressing systemic racism through the collection and use of disaggregated, race-based data

Abstract

Recent events, such as the COVID-19 pandemic, have drawn nationwide attention to systemic racism as a serious threat to public health in Canada. One promising approach to address such racism is through developing and implementing standardized procedures for collecting and using disaggregated, race-based data. In this commentary, we summarize why this approach is necessary to address systemic racism in Canada, and highlight municipal actions being taken in Edmonton, Alberta, to move this approach forward. In 2021, a Race-based Data Table, comprising 24 institutions and organizations affiliated with health, education, and policing systems, was formed in Edmonton. It aimed to engage practitioners, systems representatives, academics, and community members in collective advocacy around accessing race-based data to better understand and address disparate health outcomes associated with COVID-19 for racialized communities. Further, the Table intends to co-create a charter and toolkit outlining best practices for ethical, race-based data collection and use with local stakeholders and knowledge users. In documenting the beginning stages of the Table, and in evaluating its ongoing progress, we contribute to national conversations regarding the need for government institutions and other organizations to consistently collect and use race-based data as a means of increasing transparency and accountability in their actions.

Introduction

Race is a socially constructed concept without any scientifically supported biological basis (Canadian Institute for Health Information, 2022; Menezes et al., 2022; Sheikh et al., 2023). It was built on the foundation of inherited narratives and used to judge individuals based on perceived physical differences that serve to create and maintain power differentials within social hierarchies (Menezes et al., 2022; Sheikh et al., 2023). Given its nature as a social and power construct (Munroe, 2022), race has been used to establish and reinforce the superiority or dominance of one racialized group over another (Ontario Health, 2022). This phenomenon is known as racism, broadly defined as “a form of intergroup reaction (including thoughts, feelings, and behaviours) that systematically advantages one’s own group and/or disadvantages another group defined by racial difference” (Dovidio et al., 2010, pp. 312–327). The concept of racism has evolved over time and is understood to exist on multiple levels—internalized, interpersonal, and systemic (Canadian Institute for Health Information, 2022; Ontario Health, 2022). Racism shifts from being internal or interpersonal to systemic when unearned privileges for some and marginalization and/or disadvantage for others are built into institutional, social, political, and economic systems (Banaji et al., 2021). Systemic racism (SR) generates and perpetuates race-based group–level disadvantages and inequity through societal structures, independent of the thoughts, actions, or behaviours of an individual within the system (Alberta Labour & Immigration, 2022; Gee & Ford, 2011).

SR threatens our collective public health (Public Health Agency of Canada, 2019) and leads to inequitable outcomes in a range of areas such as health, education, employment, and justice for different groups by interacting with other forms of oppression (e.g., through media, immigration, and policing) and creating intersecting forms of disadvantage within systems (Etowa & Hyman, 2021; Public Health Agency of Canada, 2020). As a social determinant of health, SR affects many aspects of health, from access to health services and systems to individual physical and mental health (Ramaswamy & Kelly, 2015). The health and socioeconomic consequences of SR on marginalized populations are well documented (Greenwood & de Leeuw, 2012). For example, rooted in Canada’s history of settler colonialism and SR, race-based discrimination has resulted in ongoing health inequities for Indigenous people and racialized communities as compared with non-Indigenous people and non-racialized communities (Kim, 2019; Tolchin et al., 2021). Indigenous and racialized groups, particularly Canada’s Black populations, have been reported to have an increased risk of a number of illnesses and adverse events, poorer access to care, and worse health outcomes compared to persons who identify as white (Chiu, 2017; Lam-Hine et al., 2023; Ontario Health, 2022).

Recent events, like the COVID-19 pandemic, have drawn nationwide attention to the need to address the insidious, often invisible and not always intentional, nature of SR entrenched in Canadian institutions. The pandemic’s disproportionate health and socio-economic impacts on marginalized communities challenged the adage of “we’re all in this together.” Racialized and other marginalized people have borne the brunt of the pandemic’s burden, such as higher rates of infection, death, and economic losses (Razai et al., 2021). Dimensions of social equity have further come to public attention through reactions to acts of violence and ideological movements, including police brutality in the United States sparking the Black Lives Matter movement and solidarity for Asian Americans and Pacific Islanders in response to increased hate crimes during the pandemic.

In this commentary, we aim to highlight (1) the potential value of collecting and using disaggregated, race-based data (RBD) to address SR, (2) challenges and benefits of collecting and using RBD, (3) current actions moving this call forward in Canada, and (4) an RBD Table convened in the city of Edmonton, Alberta.

Addressing systemic racism

One promising avenue to measuring and mitigating SR is through the standardized collection and use of disaggregated RBD (Menezes et al., 2022), which entails collecting socio-demographic characteristics to promote equity for all, especially underserved and/or marginalized communities (Quan et al., 2023). Accounting for context is key, as differences still exist within Indigenous and racialized communities, given that people have multiple social identities (e.g., race, sex). An intersectional approach recognizes that produced inequities are compounded and interdependent, and arise from the intersection of multiple aspects of individual identities: the experience of being racialized and female is distinct from the experience of each identity in isolation. Thus, SR can intersect with other forms of identity-based marginalization and discrimination, such as sex, gender, disability, socioeconomic status, or religion creating unique multiplicative effects (Crenshaw, 1991; Canadian Heritage, 2019), with implications for population health and well-being (Etowa & Hyman, 2021).

Conceptualized through an intersectional lens, RBD can extend beyond race and ethnicity to account for these additional socio-demographic markers, like gender. People with different socio-demographic backgrounds have different experiences and outcomes, but the lack of standardized procedures for collecting and using RBD prevents clear patterns and trends from being captured (Edmonton Social Planning Council, 2021). Within healthcare systems, accounting for individual socio-demographic characteristics (e.g., sex, gender, ethnicity, religion, preferred or spoken language, and immigration status) can provide practitioners with additional information to inform culturally safe and appropriate care. For example, disaggregating RBD by preferred language can help practitioners determine the translation resources needed to identify additional barriers for racialized individuals and communities (Canadian Institute for Health Information, 2022).

Events described above, including the COVID-19 pandemic, have catalyzed institutions and organizations to signal support for collecting and using disaggregated RBD. We have an opportunity to collectively examine what critical race theorists have called attention to for decades: how systems structure and perpetuate discrimination of marginalized communities. Historical frictions and discrimination mean that marginalized communities face challenges when interacting with systems (e.g., foster care, employment, justice). Early policies like affirmative action can increase systemic diversity and inclusion, but cannot dismantle veiled policies and practices perpetuating SR. RBD can facilitate the dismantling process, by supporting public health professionals in quantifying inequities in systems, and enabling policymakers to make sensitive, evidence-based, transparent, and equitable decisions. RBD can be used to mitigate racism which acts as a barrier to health equity, and to amplify community voices and promote transparency, accountability, and shared governance of data (Canadian Institute for Health Information, 2022; Quan et al., 2023).

Challenges and benefits of collecting and using race-based data

While disaggregated RBD can be a vital tool for addressing SR, its collection remains controversial due to historical harms and ethical challenges. The discussions surrounding race and ethnicity are generally rooted in a deficit perspective, one in which the narrative is largely negative and focused on deficiencies, and can be disempowering to individuals and communities (Munroe, 2022; Sheikh et al., 2023). Moreover, researchers and policymakers often fail to consult communities about how they experience SR, leading to misplaced or irrelevant solutions. Rather than addressing SR, RBD could reinforce existing inequities by conforming to deficit perspectives, prejudices, and preconceived beliefs about racialized individuals and communities (Canadian Institute for Health Information, 2022; Sheikh et al., 2023).

Lack of transparency in the procedures surrounding the collection and use of data may perpetuate the misbelief that “race” captures biological differences, and instill fear of self-identifying by racialized persons—fear that data may be improperly used to justify government-sanctioned actions (Menezes et al., 2022; Quan et al., 2023). Thus, the collection and use of RBD carries with it far-reaching ethical implications (Andruszkiewicz et al., 2019), and for some individuals, unwanted intrusion into their lives (Edmonton Social Planning Council, 2021). Partnering with communities is necessary to strike the methodological and social balance between reliable data and potential fear created for marginalized or stigmatized groups. To ensure equitable health research and administered care, there is a need to understand, challenge, and structure the collection and use of RBD (Chiu, 2017; McKenzie, 2021). Data collection must be grounded in relationships and mutual understanding with the communities it is designed to serve, in order to improve health outcomes (Smylie, 2005). The purpose of collecting and using RBD data (i.e., to identify, monitor, and eliminate potential SR) must be clearly communicated in order to reduce the potential harm associated with RBD collection and to promote equity (Sheikh et al., 2023; Toronto Police Service, 2020). Additionally, steps must be taken to sensitively collect, store, and interpret the data (Canadian Institute for Health Information, 2022; Menezes et al., 2022).

Scholars have reported difficulties in establishing standardized procedures for collecting and using RBD (Viano & Baker, 2020). Deciding which social markers to collect data on can be complicated, and some scholars focus on socio-demographic confounders for the outcomes of interest. In examining COVID-19 health equity data reporting, Blair et al. (2021) focused on eight individual-level social markers because of their influence on the social determinants of health and infectious disease burden: age, sex, immigration status, race/ethnicity, healthcare worker status, occupational sector, income, and education groups. However, they acknowledged that additional indicators like preferred language, year of immigration, disability status, sexual orientation, household crowding, gender, and Indigenous identity may have been valuable to include too. Inconsistencies in quality and data fields across institutions make it difficult to perform comparative analyses over time and across jurisdictions. Blair et al. (2021) emphasize the value of improving communication about promising practices among public health, healthcare, and community stakeholders to help address difficulties, acknowledging that RBD collected by non-health-focused agencies, like social services agencies, can also be used to inform local health equity initiatives (Andruszkiewicz et al., 2019).

While there is risk of misusing RBD, not using RBD can create opportunities for additional harm and contribute to ongoing injustices (Harper, 2021; Munroe, 2022) by masking racial disparities and/or differentials in opportunity (Lu et al., 2022; Perales et al., 2015). RBD can help monitor ongoing discrimination, identify and remove systemic barriers, address historical disadvantage, and promote substantive equality (Ontario Human Rights Commission, 2020) through policies, procedures, and processes designed to uphold human rights and combat discrimination, as well as implement policies and procedures in ways that are fair, equitable, and bias-free (Eaton, 2020; Lu et al., 2022).

Collecting RBD cannot be overlooked—it is essential to equity, diversity, and inclusion and decolonization work (Menezes et al., 2022). In healthcare systems, data is power. For instance, the availability of RBD to Cancer Care Ontario allowed the organization to provide needed breast cancer screening to Black women and deploy evidence-based strategies available to decrease health disparities (Kwame, 2020; Ontario Health, 2022). When working within systems that perpetuate racial inequalities, adopting interventions grounded in RBD can help to promote a more equitable public health response (Ahmed et al., 2021).

Current actions in Canada

Canada prides itself on its diversity (Munroe, 2022) and ranks relatively highly in terms of the social and cultural heterogeneity rarely seen in high-income countries (Chiu, 2017). From 1981 to 2022, Canada has experienced a marked increase in individuals who identify as a visible minority (Menezes et al., 2022); and the number of racialized people increased 130% between 2001 and 2021 (Hou et al., 2023). Despite this growth, the nation lags behind its counterparts (e.g., the United States) when it comes to collecting RBD and keeping track of its racialized persons (Eaton, 2020; Robson, 2018), especially at the provincial or municipal levels (Kwame, 2020).

In the rare cases where government institutions and organizations collect RBD, few front-facing reports exist to communicate how the information can be used for decision-making. While Statistics Canada’s bi-decadal Census of Population reveals insights on labour and housing outcomes across racial and ethnic categories, data are not publicly available for years post-collection, which can make data less relevant for real-time analysis. Moreover, the Census does not address divergent outcomes related to race and ethnicity (and other socio-demographic categories) in areas beyond labour and housing, like education and health.

As was the case for systems elsewhere around the globe, the COVID-19 pandemic emerged as an unprecedented challenge for the Canadian healthcare system (Etowa & Hyman, 2021; Kwame, 2020), unmasking complex and intersecting layers of health inequities (City of Vancouver, 2021; Lu et al., 2022). A significant concern was the disproportionate impact of the pandemic’s risks and burdens on Indigenous peoples and racialized communities (Lu et al., 2022; Tuyisenge & Goldenberg, 2021). The pandemic also brought ethical challenges (e.g., rationing of limited critical care resources, informed consent, respecting of patient’s independence, duty of care) to the forefront in research and clinical practice (Quan et al., 2023; Sahebi et al., 2020). Without adequate RBD, it was and remains difficult to effectively track whether interventions are meeting the needs of everyone (Kwame, 2020).

Encouragingly, there has been increasing support for the standardized collection and use of RBD to tackle racial discrimination in Canada (see Abdi et al. (2021) for a summary of such support in health settings). For example, the Canadian Institute for Health Information (2022) published pan-Canadian standards for race-based and Indigenous identity data collection and health reporting, to ensure the quality and comparability of data collected across jurisdictions. In 2020, the Province of Ontario mandated socio-demographic data collection for individuals who tested positive for COVID-19 (Abdi et al., 2021). The Ontario Anti-Racism Directorate also supports standardized collection of RBD to inform anti-racism efforts in the education, child welfare, and justice sectors (Kwame, 2020). The Province of British Columbia (2022) introduced the Anti-Racism Data Act to identify and act on SR, informed by the collaborations with BC’s Human Rights Commissioner, First Nations and Métis leadership, and racialized communities.

In Alberta, led by the United Conservative Party (UCP) and the province from which we write, legislative progress has been less admirable. In March 2021, the Alberta Anti-Racism Advisory Council (2021) released recommendations for eliminating SR and mitigating race-motivated crimes through collecting and analyzing disaggregated data. Later that year, Alberta’s NDP (2021) published a report, entitled “Your future, your voice: What Albertans told us about racism and being anti-racist,” which demonstrated public support for these recommendations. In March 2022, Alberta’s NDP introduced legislation—Bill 204, The Anti-Racism Act (2022)—that would outline standards for collecting RBD to drive policies addressing SR (The Legislative Assembly of Alberta, 2022). But one month later, Alberta’s UCP denied this bill (Rabbit, 2022).

Despite the obstacles, there is good progress in RBD collection at national and provincial levels in Canada, except with respect to the health sector (Canadian Institute for Health Information, 2022). At the municipal, provincial, and federal government levels, there is still a need to garner greater capacity and will in order to appropriately implement an intersectional analysis framework in RBD collection and use. The Canadian Institute for Health Information in a recent report suggests that “principles of intersectionality can help guide how analyses are contextualized” (2022, p. 24). This approach is relevant for all levels of RBD collection and analysis.

Although there has been considerably less collection of RBD at the municipal level as compared to the provincial or federal levels across Canada, some projects are underway. In Toronto, the “We Ask Because We Care” initiative attempted to advance health equity by collecting demographic data from patients across three hospitals in collaboration with the Toronto Local Health Integration Network. The “We Ask Because We Care” survey asked participants about their income, sexual orientation, number of children, race, and other demographic factors that could affect health equity (Tri-Hospital & Toronto Public Health Report, 2013). This survey is now used at hospitals across Toronto to improve access to services and quality of care (Women’s College Hospital, 2023). As another example, the Edmonton Public School Board (Edmonton Public School Board, 2023) has developed an Anti-Racism and Equity board policy, and recently distributed a survey on race, ethnicity, and gender to 76,000 students within the school district. The purpose of this survey is to help identify and address inequity in schools, such as determining the suspension or expulsion rates by race to support ongoing anti-racism and equity efforts (French, 2022).

The Edmonton Race-based Data Table

Given the systemic nature of resistance to collection and use of RBD, and the need to shift from data governance from systems that have reinforced racial injustice and marginalization to governance by communities (Edmonton Social Planning Council, 2021; Kwame, 2020), municipal efforts are needed to engage communities in establishing data collection, analysis, and reporting priorities. Currently, municipal efforts are siloed, and current systems are not well equipped to collect and use RBD (Canadian Institute for Health Information, 2022).

In Edmonton, Alberta, a novel initiative has emerged to fill current legislative gaps and streamline efforts at the municipal level. In February 2021, through EndPovertyEdmonton (an anti-poverty community initiative) and the Edmonton Local Immigration Partnership (a community-based network supporting newcomers), an RBD Table was formed to engage practitioners, systems representatives, academics, and community members in collective advocacy around accessing RBD related to COVID-19 and disparate health outcomes for racialized communities. The RBD Table seeks to identify and promote promising practices for RBD collection as part of achieving its vision that relevant and ethical data collected actively contribute to reducing SR. This vision is grounded in an anti-oppressive and anti-racist framework. Initially, the RBD Table comprised 24 institutions and organizations, including Alberta Health Services, Edmonton Police Service, and the Edmonton Public School Board. The RBD Table completed training on “Anti-Racism and Indigenous Identity Data Standards,” which helped drive group conversations and the development of its terms of reference with four strategic priorities: (1) develop a community framework with guiding principles for RBD collection; (2) develop a mechanism to ensure the community is involved and equipped to lead the work; (3) explore, research, and propose methods for anti-racist data collection; and (4) engage in micro- and macro-level advocacy efforts about collecting anti-racism data with relevant institutions (e.g., education, health, policing) and civil society. Through consistent efforts, the RBD Table has maintained and supported a growing membership of systems and nonprofit sector representations, with currently more than 50 members representing approximately 40 institutions and organizations.

As the RBD Table’s work aligned with EndPovertyEdmonton’s Anti-Racism Game Changer (EndPovertyEdmonton, 2017), EndPovertyEdmonton’s leadership hired an Anti-Racism Director to support the RBD Table’s work. EndPovertyEdmonton and the United Way of the Alberta Capital Region currently provide co-chairs and infrastructure support to the Table. The RBD Table members communicate regularly with systems representatives and racialized community representatives to keep track of local changes with respect to RBD collection in education, health, and policing systems in Edmonton. Over time, the Table has provided advisory support to systems such as the Edmonton Police Commission and the RCMP, and collaborated with the British Columbia Ministry of Citizen Services on their province’s RBD collection initiatives. Additionally, the Table acted as a bridge to connect the Edmonton and Toronto Public School Boards to support the development of the first RBD collection initiative within the Edmonton Public School Board. In 2023, the Table facilitated an environmental scan of RBD collection within systems in Edmonton, in partnership with Equity in Action (a consulting organization), which revealed that systems and nonprofits are very interested in RBD and the majority of these institutions were at the exploration or action phases of RBD collection.

Feedback from discussions with systems representatives and community members who are part of the Table provides necessary information on topics such as equity in health, social, non-profit, and policing sectors. This feedback can help institutions and organizations improve their process of collection and use of RBD. To accelerate its strategic priorities, the RBD Table has introduced three working groups: a Principles Working Group, an Advocacy Working Group, and a Community Involvement Working Group. The Principles Working Group has been tasked to co-create standardized procedures, in the form of a charter and toolkit, for best practices regarding RBD collection and use with local stakeholders and knowledge users. For this task, the United Way of the Alberta Capital Region (co-chair of the Table) will be the backbone organization. The charter will outline principles and values of RBD collection, and the toolkit will include guidelines for enacting the charter in different communities. Together, the charter and toolkit, currently under development, will provide recommendations for data governance and standards (e.g., fields, methods, protection of information and privacy, including how RBD are reported and used, and shared internally and externally). The Advocacy Working Group has been identified as a potential avenue for building and strengthening relationships with external stakeholders at the city and provincial levels, and the Community Involvement Working Group is working on strategies to build capacity for community engagement and leadership when collecting, using, and sharing RBD in the social and public sectors.

Conclusion

Increasing public attention to systemic racism across Canada has opened a legislative policy window for standardizing the ethical collection and use of disaggregated race-based data. The RBD Table allows for development of a localized framework which is community-informed, and co-created and designed with relevant stakeholders. By documenting its beginning stages and evaluating its ongoing progress, we contribute to national conversations regarding the need for institutions and organizations to increase transparency and accountability in their initiatives by collecting and using race-based data.

Author contributions

All authors contributed to conceptualizing the content of this manuscript. MJM provided overall supervision and guidance in writing this manuscript and wrote the first draft. SB provided suggestions and edits on previous versions of the manuscript. USA made edits on previous versions of the manuscript. All authors read and approved the final manuscript.

Funding

This work was supported by EndPovertyEdmonton.

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Declarations

Ethics approval

This article does not contain any studies with human participants performed by any of the authors.

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Conflict of interest

The authors declare no competing interests.