The Complex Matter of Collecting Race-Based Healthcare Information
There is no question that racial inequalities translate into the public health context. These inequalities may manifest in the form of poor health outcomes due to factors including a lack of medical access and prolonged structural racism, which heavily impacts social determinants of health. Such discrimination is systemic and and often invisible, since much of Canadian healthcare is standardized, thereby masking the needs of many non-majority racial groups [1]. As such, even though the same medical services are provided for everybody, the presence of cultural, linguistic, or structural barriers bars equal healthcare access for all. In an interview with Smithsonian Magazine, Sharrelle Barber, a Drexel University Assistant Professor of Epidemiology points out that “[r]acism is a public health problem, meaning racism is at the root of the inequities in health” and goes on to say that “whether it's housing, criminal justice, education, wealth, economic opportunities, healthcare, all of these interlocking systems of racism really are the main fundamental drivers of the racial inequities that we see'' [2]. As such, the consideration of race and its associated structural inequalities is indispensable when constructing public health initiatives and creating health policy.
Over the past year, the effort to dispel racial discrimination in North American healthcare systems has received renewed interest, largely as a reaction to the Black Lives Matter Movement occuring south of the border. A Lancet study which analyzed fifty articles reporting American and British racially disaggregated COVID-19 data found that individuals from Asian and Black ethnic groups are more likely to be infected as compared to White individuals [3]. The authors proposed that the disproportionate impact of COVID-19 on these groups is largely attributable to socioeconomic factors such as living in crowded neighborhoods, having multigenerational households, and being employed as an essential worker, as well as cultural factors, including the lack of sufficient culturally-sensitive care and a lack of trust in physicians. Additional factors, such as unaffordable housing [4,5] and discrimination of front-line workers [6], have also been documented to persist and continue to affect racial minorities. In Toronto, an investigation by CBC found that people of colour make up 83% of reported COVID-19 cases and 71% of those hospitalized with COVID-19 [7]. As case counts rise alarmingly and spread into increasingly disparate parts of Canada, a renewed national dialogue on collecting race-based data is the need of the hour.
The discourse on whether or not Canada should collect race-based healthcare data is diverse and includes many fears, risks, and opportunities. There are those who assert that collecting race-based data aggravates prior racial inequalities and potentially worsens healthcare provision to these groups. As such, this data carries the risk of being weaponized against racialized groups. Yet others argue that collecting race-based data may detract from the overarching issue of how dominant culture and social institutions give rise to racialization. Additionally, there are some who fear that collecting such data, although it can fuel descriptive research, may lead to an unending cycle of grants and publications without any tangible public health improvements. On the other hand, many others warn that prolonging our refusal to collect race-based data based on colour-blind policies can obscure race-specific needs and health disparities. I hope to advocate for the argument of collecting disaggregated race-based healthcare data, but I will explore different facets of this debate in an effort to temper my discussion with a healthy degree of skepticism and realism.
It’s important to consider what race is in order to appropriately situate our discussion. Rather than being an inherent biological attribute, race is a social construct that is informed by social, historical, and political underpinnings in which people may be grouped based on visual cues, such as skin colour [8, 9,11]. It is also important to note that race and ethnicity are distinct concepts. Ethnicity groupings are based on geographic origins, cultural traditions, language, and religion whereas racial classifications are more intimately linked to physical characteristics [9]. Thus, both of these social stratifications import differing histories and social perceptions.
Various Canadian organizations have been actively proposing potential frameworks and standards with which race-based data collection can take place. A report commissioned by the Canadian Institute for Health Information claims that the principal intent of collecting disaggregated race-based healthcare data should be to “identify, monitor and address inequities that potentially stem from bias and racism — including at systemic, interpersonal and internal levels” [9]. However, those opposed to such data collection advance the argument that when social determinants of health are understood in the context of this data and the discourse is situated in an incomplete definition of race, it “inadvertently leads to...biological understandings of race” [10]. As a result, this data, which would have been intended to dispel discriminatory healthcare information and practices, may actually perpetuate them. It may also contribute to the normalization of attributing certain health behaviours and outcomes simply to race rather than social vulnerabilities, structural inequalities that produce these vulnerabilities, and flawed public policies. The fear is that a fixation on finding race’s biological nature, which is a flawed assumption to begin with, is a corollary to physicians standardizing race-based behaviours in the clinical context, which may reinforce prior racial prejudices and stereotypes, encourage physicians to overattribute race as a cause for disease, propel the scientific community to ‘find’ evidence for a solely genetic basis to race, and motivate the government to place restrictions on immigration and reproduction. Although these may seem like overstated and paranoid claims, much of these fears stem from prior practices of eugenics, in which many of these were reality [11]. As such, to some critics, improper implementation of race-based healthcare policies can be akin to a revisitation of eugenics.
Even if we make the ideal assumption that race-data collection is done fairly and appropriately, we throw open the door to a host of other problems when considering applications of this data. For one, publicising such healthcare data may build stereotypes and strengthen prejudices within the medical community, which can add to trends of cumulative disadvantage and actually put patients at risk of receiving worse care [9, 10]. Furthermore, asking individuals questions about race may cause feelings of fear, anxiety, and/or anger, which can impact perceptions of medical satisfaction and care [9]. Also, if and when such data is leveraged by pharmaceutical companies to create ‘race-specific’ drugs, how do we ensure that such drugs ‘target’ race appropriately [12]? Moreover, how would we prevent pharmaceutical companies from taking advantage of such data to create ‘race-specific’, albeit chemically indistinguishable medicines, to avail their commercial motivations [12]?
Those advocating for the collection of race-based data understand these drawbacks. Dr. Onye Nnorom, an Associate Program Director of the Public Health and Preventive Medicine Residency Program at the University of Toronto proposes that even if doctors know that race is simply a social construct, it can still be easy to “pathologize populations and say, perhaps something is genetically wrong with them” [13]. However, they still assert that collecting race-based data is necessary. In particular, their main assertion is that without access to such data, vulnerable populations remain statistically invisible and colour-blind policies are perpetuated, which shield us from health disparities and prevent making changes to discriminatory practices [13-16]. Appropriate use of this data could help improve access to care, understand causes of health disparities, and strengthen government accountability in decreasing such disparities [16]. With that being said, certain precautions need to be at the forefront. Issues of data privacy, underrepresentation of certain minority groups (such as Indigenous peoples), and data sovereignty need to be carefully considered and accounted for [13, 15]. But with the necessary safeguards in place, I am cautiously optimistic that race-based data collection can be just what Canada needs to amend health inequalities. By involving racial minorities in discussions about how their population-level health data should be used and leveraging this information to advocate for their health, Canada can further ensure that none of these minorities’ needs are being masked by the blanket coverage of universal healthcare. Not only that, but racialized communities also need to be involved within the process of data collection to ensure that their needs and concerns are being persistently addressed.
Presently, the need for race-based data for COVID-19 is intensely pressing. No Canadian province or territory currently collects racial or ethnic information about COVID-19 and the federal government doesn’t seem to have any imminent plans to amend this lack of data [17]. Having a universal health-care system doesn’t make Canada immune to social inequalities in health [18]. Although provinces like Ontario and Manitoba and cities like Toronto, Montreal, and Ottawa are currently collecting voluntary response race data from those infected with COVID-19, the collection of Canadian health data should be a responsibility that is shared between regional, provincial, and federal levels of government [19]. Losing out on the opportunity to compile and communicate this important data is a serious failing of the government in ensuring the health and safety of all Canadians. As Dr.Kwame McKenzie says in his briefing to Canada’s standing committee on health, if data is not disaggregated by race, “you can be invisible in the numbers, your story will not be told, your needs will not drive policy action, and your needs will not be met” [20]. We need to change that narrative.
References:
[1] Halwani, S. (2004, December). Racial inequality in access to health care services. Ontario Human Rights Commission. http://www.ohrc.on.ca/en/race-policy-dialogue-papers/racial-inequality-access-health-care-services
[2] Thulin, L. (2020, July 20). What “Racism Is a Public Health Issue” Means. Smithsonian Magazine. https://www.smithsonianmag.com/science-nature/what-racism-public-health-issue-means-180975326/
[3] Sze, S., Pan, D., Nevill, C. R., Gray, L. J., Martin, C. A., Nazareth, J., Minhas, J. S., Divall, P., Khunti, K., Abrams, K. R., Nellums, L. B., & Pareek, M. (2020). Ethnicity and clinical outcomes in COVID-19: A systematic review and meta-analysis. EClinicalMedicine, 29, 2589–5370. https://doi.org/10.1016/j.eclinm.2020.100630
[4] Grant, K. (2020, July 02). Data show poverty, overcrowded housing connected To COVID-19 rates among racial minorities in Toronto. Retrieved from https://www.theglobeandmail.com/canada/toronto/article-data-show-poverty-overcrowded-housing-connected-to-covid-19-rates/
[5] Ngabo, G. (2019, November 22). The Ford government removed rent control on new units. A year later tenants are reporting double-digit increases. Retrieved from https://www.thestar.com/news/gta/2019/11/22/the-ford-government-removed-rent-control-on-new-units-a-year-later-tenants-are-reporting-double-digit-increases.html
[6] Mosleh, O. (2020, May 31). Front-line health-care workers speak up about racism at work, from questioning credentials to being seen as 'just the help'. Retrieved from https://www.thestar.com/news/canada/2020/05/31/front-line-health-care-workers-speak-up-about-racism-at-work-from-questioning-credentials-to-being-seen-as-just-the-help.html
[7] Cheung, J. (2020, July 30). Black people and other people of colour make up 83% of reported COVID-19 cases in Toronto. CBC. https://www.cbc.ca/news/canada/toronto/toronto-covid-19-data-1.5669091
[8] Jablonski, N. G., & Chaplin, G. (2010). Human skin pigmentation as an adaptation to UV radiation. Proceedings of the National Academy of Sciences, 107(Supplement_2), 8962–8968. https://doi.org/10.1073/pnas.0914628107
[9] Canadian Institute for Health Information. (2020). Proposed Standards for Race-Based and Indigenous Identity Data Collection and Health Reporting in Canada. CIHI. https://www.cihi.ca/sites/default/files/document/proposed-standard-for-race-based-data-en.pdf
[10] Singh, S. (2020, May 27). Collecting race-based data during coronavirus pandemic may fuel dangerous prejudices. The Conversation. https://theconversation.com/collecting-race-based-data-during-coronavirus-pandemic-may-fuel-dangerous-prejudices-137284
[11] Lombardo, P. (2018). Eugenics and Public Health: Historical Connections and Ethical Implications. In A. C. Mastroianni, J. P. Kahn, & N. E. Kass (Eds.), The Oxford Handbook of Public Health Ethics (pp. 642–651). Oxford University Press. https://www.oxfordhandbooks.com/view/10.1093/oxfordhb/9780190245191.001.0001/oxfordhb-9780190245191-e-56
[12] Roberts, D. E. (2011). What’s Wrong with Race-Based Medicine?: Genes, Drugs, and Health Disparities. Minnesota Journal of Law, Science & Technology, 12(1), 1–21. https://scholarship.law.umn.edu/mjlst/vol12/iss1/3
[13] CBC Radio. (2020, June 11). How does systemic racism predispose people to COVID-19? CBC. https://www.cbc.ca/radio/whitecoat/how-does-systemic-racism-predispose-people-to-covid-19-1.5607371
[14] Rizvic, S. (2020, July 15). Why race-based data matters in health care. Institute for Canadian Citizenship. https://www.inclusion.ca/article/why-race-based-data-matters-in-health-care/
[15] Balestra, C., & Fleischer, L. (2018, November). Diversity statistics in the OECD: How do OECD countries collect data on ethnic, racial and indigenous identity? Organisation for Economic Co-operation and Development. http://www.oecd.org/officialdocuments/publicdisplaydocumentpdf/?cote=SDD/DOC(2018)9&docLanguage=En
[16] Fremont, A., & Lurie, N. (2004). The Role of Racial and Ethnic Data Collection in Eliminating Disparities in Health Care. In Eliminating Health Disparities: Measurement and Data Needs (pp. 202–231). National Academies Press. https://www.ncbi.nlm.nih.gov/books/NBK215740/
[17] Mulligan, K., Rayner, J., & Nnorom, O. (2020, April 30). Race-based health data urgently needed during the coronavirus pandemic. The Conversation. https://theconversation.com/race-based-health-data-urgently-needed-during-the-coronavirus-pandemic-136822
[18] Slaughter, G. (2020, September 30). Researcher urges Canada to track link between race and COVID-19 as study reveals troubling trend. CTV News. https://www.ctvnews.ca/health/coronavirus/researcher-urges-canada-to-track-link-between-race-and-covid-19-as-study-reveals-troubling-trend-1.5127684
[19] Inequities in COVID-19 Health Outcomes: The Need for Race- and Ethnicity-Based Data. (2020, December 8). HillNotes. https://hillnotes.ca/2020/12/08/inequities-in-covid-19-health-outcomes-the-need-for-race-and-ethnicity-based-data/
[20] McKenzie, K. (2020, July). Briefing to Standing Committee on Health: Canada’s COVID-19 response. Wellesley Institute. https://www.ourcommons.ca/Content/Committee/431/HESA/Brief/BR10831012/br-external/McKenzieKwame-e.pdf