tag:theconversation.com,2011:/ca/topics/race-based-data-86066/articlesrace-based data – The Conversation2024-02-14T14:39:57Ztag:theconversation.com,2011:article/2220532024-02-14T14:39:57Z2024-02-14T14:39:57ZAddressing anti-Black racism is key to improving well-being of Black Canadians<figure><img src="https://images.theconversation.com/files/575109/original/file-20240212-26-1lvn1y.jpg?ixlib=rb-1.1.0&rect=45%2C22%2C7549%2C4873&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Anti-Black racism continues to be a major determinant of poor health and social outcomes for Black Canadians. </span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>Anti-Black racism continues to be a major determinant of poor health and social outcomes for Black Canadians. Addressing this racism within Canadian institutions — like the health-care system, justice system, the child welfare system and education — has far-reaching implications. </p>
<p>The COVID-19 pandemic is a good example. Black populations had the <a href="https://www150.statcan.gc.ca/n1/pub/45-28-0001/2022001/article/00010-eng.htm">highest age-standardized mortality rate</a> among racial groups in Canada. Moreover, in the early days of the pandemic, <a href="https://globalnews.ca/news/7015522/black-neighbourhoods-toronto-coronavirus-racism/">living in a Black</a> community was strongly correlated with a diagnosis of COVID-19. Black Canadians also have a <a href="https://www150.statcan.gc.ca/n1/pub/82-003-x/2023002/article/00001-eng.htm">higher mortality</a> rate from HIV, diabetes and several forms of cancer.</p>
<p>The <a href="https://crrf-fcrr.ca/glossary-of-terms/">Canadian Race Relations Foundation</a> describes anti-Black racism as “policies and practices…that mirror and reinforce beliefs, attitudes, prejudice, stereotyping and/or discrimination towards people of African descent.” </p>
<p>As a Canadian Black academic and a parent of two young children, I know that anti-Black racism has real-world consequences. Research reveals that Black children and youths are overrepresented in the <a href="https://theconversation.com/equitable-sentencing-can-mitigate-anti-black-racism-in-canadas-justice-system-217515">criminal justice</a> and <a href="https://theconversation.com/we-know-better-so-why-arent-we-doing-better-in-supporting-the-health-of-children-and-youth-in-care-193726">child welfare systems</a>, and have lower <a href="https://www150.statcan.gc.ca/n1/pub/75-006-x/2020001/article/00002-eng.htm">post-secondary school completion rates.</a> </p>
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Read more:
<a href="https://theconversation.com/recognizing-history-of-black-nurses-a-first-step-to-addressing-racism-and-discrimination-in-nursing-125538">Recognizing history of Black nurses a first step to addressing racism and discrimination in nursing</a>
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<p>Historically, Black people in Canada were denied enrolment in <a href="https://www.thecanadianencyclopedia.ca/en/article/racial-segregation-of-black-students-in-canadian-schools">medical schools</a> and <a href="https://utorontopress.com/9781442609952/moving-beyond-borders/">nursing schools</a>, which has had long-term impacts on the provision of culturally sensitive health care.</p>
<h2>Contemporary and historical inequities</h2>
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<img alt="A Black doctor with a Black mother and child" src="https://images.theconversation.com/files/575108/original/file-20240212-28-pmgxwg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/575108/original/file-20240212-28-pmgxwg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/575108/original/file-20240212-28-pmgxwg.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/575108/original/file-20240212-28-pmgxwg.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/575108/original/file-20240212-28-pmgxwg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/575108/original/file-20240212-28-pmgxwg.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/575108/original/file-20240212-28-pmgxwg.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Black people in Canada were denied enrolment in medical schools and nursing schools, which has had long-term impacts on the provision of culturally sensitive health care.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
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<p>Black Canadians’ experiences are rooted in contemporary and historical inequities, including Canada’s <a href="https://theconversation.com/why-reparations-and-apologies-to-african-canadians-are-necessary-140527">history of slavery</a> and racial discrimination. Canada’s early immigration policies were racist, such as <a href="https://pier21.ca/research/immigration-history/immigration-act-1910">Section 38 of the Immigration Act of 1910</a>, which: </p>
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<p>“prohibited for a stated period, or permanently, the landing in Canada, or the landing at any specified port of entry in Canada, of immigrants belonging to any race deemed unsuited to the climate or requirements of Canada, or of immigrants of any specified class, occupation or character.” </p>
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<p>It was further proposed that “the Negro race…is deemed unsuitable to the climate and requirements of Canada.”</p>
<p>Findings from my research are consistent with the <a href="https://digitallibrary.un.org/record/1304262?ln=en">United Nations Report of the Working Group of Experts on People of African Descent</a> on its mission to Canada, which affirmed the negative legacy of these past practices. Policy formulations still shape access to material resources and contribute to structural inequities in Canada, evident in the pervasive low incomes of Black Canadians.</p>
<p>While median annual wages generally increase for the Canadian population, <a href="https://www150.statcan.gc.ca/n1/pub/89-657-x/89-657-x2020001-eng.htm">Black men’s wages have remained stagnant</a>. Economic deprivation and employment barriers informed by anti-Black racism also have generational consequences. Significantly, Black children (and Filipino children) are the only two groups of children that <strong>on average</strong> <a href="https://doi.org/10.29173/cjs1651">do not surpass their parents</a>’ levels of education in Canada. </p>
<p>As well, many Black immigrant women, especially from Western and Central Africa, experience high levels of poverty despite their <a href="https://www150.statcan.gc.ca/n1/pub/89-657-x/89-657-x2020001-eng.htm">high educational achievements</a>, often acquired prior to coming to Canada.</p>
<h2>Black youth mental health</h2>
<p><a href="https://doi.org/10.1503/cmaj.212142">Black youth spoke most about racism</a> in our research on their mental health experiences. They internalize racism, which in turn affects their future well-being. We learned that numerous factors intersect to create challenges. For example, Black youth are often perceived as guilty of unacceptable behaviours and must prove themselves innocent. The prevailing perception that toxic or unhealthy masculinity is an attribute of Black men also affects their mental health.</p>
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Read more:
<a href="https://theconversation.com/black-mens-mental-health-concerns-are-going-unnoticed-and-unaddressed-221862">Black men's mental health concerns are going unnoticed and unaddressed</a>
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<p><a href="https://doi.org/10.24095/hpcdp.41.9.01">Income inequality</a> and insufficient financial resources are complicating factors, impeding many young Black men from getting the counselling they need to improve their mental health. When they do access such supports, lack of diversity among providers and culturally appropriate services can be further barriers. LGBTQIA+ Black youth may face dire situations, experiencing racism within the LGBTQIA+ community and homophobia within the Black community.</p>
<h2>Addressing inequities</h2>
<p>Partnering with Black communities is a crucial component in effective efforts to mitigate inequities. Indeed, it is essential that Black community members participate, to capitalize on their strengths and actively engage in improving their well-being. </p>
<p>Through my personal and professional experiences, I’ve had a unique glimpse into the brilliance and strengths of various Black communities, which are often untapped. These includes a collectivist orientation, spirituality and the value of respect. Mentorship within these communities has also produced several unique gains. For example, my participation in the University of Toronto <a href="https://temertymedicine.utoronto.ca/summer-mentorship-program">Summer Mentorship Program</a> in my early years in Canada, contributed to my success. I have also created a <a href="https://cumming.ucalgary.ca/office/precision-equity-social-justice/pathway-supports/black-youth-mentorship-program">Black Youth Mentorship and Leadership Program</a> to socially and economically empower Black youth to contribute to the society. Around 150 Black youth have been trained. </p>
<p>Several other mentorship programs exist in Black communities and some, as indicated above, were created by <a href="https://medicine.dal.ca/departments/core-units/global-health/plans.html">Black faculty members and administrators in educational institutions</a>. </p>
<p>Institutions must do more than just provide education and develop anti-racist policies; they must also ensure accountability in addressing racism. Embedding anti-racism practices in evaluation at all levels is an important step, especially since many professions in Canada don’t include anti-racism as a required competence. Such changes will support improved social and health outcomes overall.</p>
<p>Collecting <a href="https://theconversation.com/black-health-matters-dont-call-me-resilient-ep-5-transcript-156090">race-based data</a> is still not that common, but as this practice becomes more widespread, the data will tell us more about the ongoing social and health outcomes of Black Canadians. My aim is to help all Canadians understand that anti-Black racism in our country does not exist in isolation; it intersects with many other aspects of people’s lives. Race-based data is a step towards better understanding these relationships.</p>
<h2>Looking ahead</h2>
<p>Anti-Black racism has health, social and economic consequences for Black populations in Canada. We are a growing population in Canada of approximately <a href="https://www.statcan.gc.ca/en/dai/smr08/2024/smr08_278">1.5 million</a> individuals who self-identify as Black, accounting for 4.3 per cent of the country’s total population. </p>
<p>However, anti-Black racism has consequences for population outcomes for all Canadians, as we saw during the <a href="https://theconversation.com/inquiry-into-coronavirus-nursing-home-deaths-needs-to-include-discussion-of-workers-and-race-139017">COVID-19 pandemic</a>. It is key that we provide mentorship, collect race-based data, take <a href="https://doi.org/10.1353/ces.2020.0017">strength-based</a> participatory research approaches and establish and maintain accountable practices that centralize race and its intersections. </p>
<p>These moves will improve health and social outcomes for Black Canadians and generate stronger population outcomes in Canada.</p><img src="https://counter.theconversation.com/content/222053/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Bukola Salami receives funding from Policywise for Children and Families for a project on mental health of Black youth named in this article</span></em></p>Anti-Black racism has health, social and economic consequences for Black populations in Canada. Partnering with Black communities is a crucial component in effective efforts to mitigate inequities.Bukola Salami, Professor, Department of Community Health Sciences, University of CalgaryLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1851872022-06-16T20:30:41Z2022-06-16T20:30:41ZStrip searches are ineffective, unnecessary and target racialized Canadians<figure><img src="https://images.theconversation.com/files/469239/original/file-20220616-22-7xkqbl.JPG?ixlib=rb-1.1.0&rect=0%2C41%2C4000%2C2616&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Chief James Ramer of the Toronto Police Service speaks during a news conference releasing race-based data at police headquarters in Toronto.</span> <span class="attribution"><span class="source">THE CANADIAN PRESS/ Tijana Martin</span></span></figcaption></figure><iframe style="width: 100%; height: 100px; border: none; position: relative; z-index: 1;" allowtransparency="" allow="clipboard-read; clipboard-write" src="https://narrations.ad-auris.com/widget/the-conversation-canada/strip-searches-are-ineffective--unnecessary-and-target-racialized-canadians" width="100%" height="400"></iframe>
<p>With the Toronto Police Service’s release of race-based data on strip searches as part of its <a href="https://www.tps.ca/race-based-data-collection/2020-rbdc-findings/">Race and Identity-based Data Collection Strategy</a>, we can clearly see who it chooses to subject to strip searches. </p>
<p>We now know that, in 2020 — even though Black people make up around 10 per cent of the city’s population — <a href="https://data.torontopolice.on.ca/pages/race-based-data">one in every three people who were strip-searched are Black</a>. <a href="https://www.thestar.com/news/gta/2022/06/15/9-key-findings-from-the-landmark-toronto-police-report-on-systemic-anti-black-discrimination.html">Nearly a third of all Indigenous people who were arrested were strip-searched</a>.</p>
<p>Not only does strip searching evoke <a href="https://cbr.cba.org/index.php/cbr/article/view/4714">racial and sexual trauma</a>, it’s also ineffective. It’s finally time to talk about ending this oppressive police practice.</p>
<h2>Strip searches are traumatic</h2>
<p>For the past 20 years, the courts and watchdog agencies have tried to regulate the way police conduct strip searches, with a mind to decrease the overall number of strip searches that they conduct. </p>
<p>In its landmark case on strip searches, <a href="https://scc-csc.lexum.com/scc-csc/scc-csc/en/item/1924/index.do"><em>R. v. Golden</em> (2001)</a>, the Supreme Court of Canada defined strip searches as a distinct type of “personal search,” contrasted against general, pat-down or frisk and cavity searches. The court defined the strip search as involving “the removal or rearrangement of some or all of the clothing of a person so as to permit a visual inspection of a person’s private areas, namely genitals, buttocks, breasts … or undergarments.” </p>
<p>In the Golden case, the court also acknowledged the basic intrusiveness of strip searches. They “represent a significant invasion of privacy” and are often a “humiliating, degrading and traumatic experience.” <a href="https://cbr.cba.org/index.php/cbr/article/view/4376/4369">Racialized people, as well as women</a>, can experience being strip searched as akin to a sexual assault. Incarcerated women also view their strip searches <a href="https://doi.org/10.1177/0886109919878274">as sexual assault</a>. </p>
<p>The Supreme Court also recognized that Black and Indigenous people suffer disproportionate harm due to the racial trauma associated with being strip searched. In the absence of statistics, the majority of the Supreme Court justices in the Golden case inferred that Black and Indigenous people are “likely to represent a disproportionate number of those who are arrested by police and subjected to personal searches, including strip searches.” </p>
<p>According to law professor <a href="https://digitalcommons.osgoode.yorku.ca/sclr/vol42/iss1/14">David Tanovich</a>, the court’s endorsement of this fact established an anti-racism principle in interpreting the Charter of Rights and Freedoms.</p>
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<img alt="A person holds up a sign reading Black Lives Matter outside Toronto police headquarters." src="https://images.theconversation.com/files/469267/original/file-20220616-22-obh3lq.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/469267/original/file-20220616-22-obh3lq.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=443&fit=crop&dpr=1 600w, https://images.theconversation.com/files/469267/original/file-20220616-22-obh3lq.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=443&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/469267/original/file-20220616-22-obh3lq.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=443&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/469267/original/file-20220616-22-obh3lq.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=556&fit=crop&dpr=1 754w, https://images.theconversation.com/files/469267/original/file-20220616-22-obh3lq.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=556&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/469267/original/file-20220616-22-obh3lq.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=556&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Protesters participate in a defund the police rally in front of Toronto Police Service headquarters in July 2020.</span>
<span class="attribution"><span class="source">THE CANADIAN PRESS/Nathan Denette</span></span>
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<h2>Strip searches and systemic racism</h2>
<p>The Toronto Police Services’ race-based data collection’s focus on strip searches is due to the efforts of provincial watchdog agencies and lawmakers in bringing the police in Ontario into compliance with the law. </p>
<p>In its 2019 Report, <a href="https://www.oiprd.on.ca/wp-content/uploads/OIPRD_Breaking-the-Golden-Rule_Report_Accessible.pdf">“Breaking the Golden Rule: A Review of Police Strip Searches in Ontario,”</a> the Ontario Independent Police Review Director, an independent police watchdog, found that police in Ontario conduct “too many” unjustified and illegal strip searches.</p>
<p>Although the report didn’t delve into matters of systemic racism, the watchdog recommended that police services collect race-based data on strip searches as part of a broader police data collection project mandated by the province’s 2017 <a href="https://www.ontario.ca/laws/statute/17a15">Anti-Racism Act</a>. </p>
<h2>Why are strip searches needed?</h2>
<p>The justification that supposedly trumps the rights of individuals is that strip searches are necessary. But are they?</p>
<p>Under present law, an officer may search for weapons, evidence or anything that could cause injury and assist in a person’s escape.</p>
<p>According to the Toronto Police Service’s <a href="https://www.tps.ca/files/download/1650390689/42658/">procedures on searching people</a>, police officers are expected to conduct a frisk search before contemplating a strip search. The vast majority of items are recovered during these searches.</p>
<p>Additionally, during the booking process, the police routinely confiscate items like shoelaces and belts. The courts have criticized police forces in Ontario — <a href="https://www.canlii.org/en/on/onsc/doc/2013/2013onsc1000/2013onsc1000.html">York Region</a> and <a href="https://www.canlii.org/en/on/oncj/doc/2017/2017oncj439/2017oncj439.html">Quinte West</a> — for confiscating underwire and string brassieres as a matter of routine procedure.</p>
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<img alt="A Toronto police cruiser is seen parked in the middle of a road." src="https://images.theconversation.com/files/469263/original/file-20220616-13-vguq7w.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/469263/original/file-20220616-13-vguq7w.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/469263/original/file-20220616-13-vguq7w.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/469263/original/file-20220616-13-vguq7w.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/469263/original/file-20220616-13-vguq7w.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/469263/original/file-20220616-13-vguq7w.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/469263/original/file-20220616-13-vguq7w.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Toronto police attend the scene of a collision.</span>
<span class="attribution"><span class="source">THE CANADIAN PRESS/Christopher Katsarov</span></span>
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<p>The Breaking the Golden Rule report noted that Toronto police seized bras from a third of the women they arrested from 2016 to 2019. The forced removal of these items constitutes a strip search, and routine strip searches are not justified by law.</p>
<p>Taking into account the dragnet that police officers subject arrested people to, especially those who are brought into police custody, it’s not surprising there isn’t much left for them to find through a strip search.</p>
<h2>Items rarely found</h2>
<p>In <a href="https://tpsb.ca/jdownloads-categories?task=download.send&id=449&catid=27&m=0">May 2014</a>, the Toronto police chief at the time reported to the Police Services Board that only in two per cent of strip and cavity searches did police find any items, and only a fraction of those found objects posed a risk. </p>
<p>Unfortunately, the Toronto Police Service does not offer descriptions of these items in the current <a href="https://app.powerbi.com/view?r=eyJrIjoiYjE4ZGNmZGYtMjEyZC00NjdhLWIxNGUtZWE1YTA0OGViYTJmIiwidCI6Ijg1MjljMjI1LWFjNDMtNDc0Yy04ZmI0LTBmNDA5NWFlOGQ1ZCIsImMiOjN9">race-based strip search dataset</a>, its <a href="https://data.torontopolice.on.ca/pages/open-data">open data portal</a> or its <a href="https://tpsb.ca/policies-by-laws/adequacy-policies?task=download.send&id=109&catid=4&m=0">annual reports</a> to the Toronto Police Service Board.</p>
<p>Given that police rarely discover dangerous items, is it really worth subjecting countless people to searches that are degrading, infringe constitutional rights and traumatizing to the Black and Indigenous people who are disproportionately searched? It’s time to end the practice.</p><img src="https://counter.theconversation.com/content/185187/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The article was completed with research from projects funded by York University, the Jack and Mae Nathanson Centre on Transnational Human Rights, Crime and Security, and the Ontario Graduate Scholarship.</span></em></p>Strip searching is a police practice that evokes racial and sexual trauma, and it’s also ineffective. It’s finally time to talk about ending this oppressive police practice.Monika Lemke, PhD Candidate, Socio-Legal Studies, York University, CanadaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1803832022-04-05T20:27:09Z2022-04-05T20:27:09ZFailure to include Black communities in health policy public engagement perpetuates health disparities<figure><img src="https://images.theconversation.com/files/455728/original/file-20220401-27172-hsk71w.jpg?ixlib=rb-1.1.0&rect=243%2C657%2C4304%2C2863&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Not engaging Black communities meaningfully in health and other policy-making processes has been a critical failure, reflecting a history of systemic racism, marginalization and political indifference.</span> <span class="attribution"><span class="source">(Nappy.co)</span>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span></figcaption></figure><p>It is time for us to accept that policy failure and lack of community engagement in policy decision-making go hand-in-hand. The fact that the communities with the worst health outcomes are also the communities least likely to be meaningfully engaged in health policy decision-making should not be a surprise.</p>
<p>As it stands, a growing body of evidence suggests that while many decision-making bodies proclaim publicly that they <a href="http://www.engagementinhealthpolicy.ca/">want input from racialized and other marginalized communities</a>, many institutions are not willing to listen to, accept or integrate what those communities have to say.</p>
<p>Broad systemic problems <a href="https://rsc-src.ca/en/covid-19/impact-covid-19-in-racialized-communities/covid-19-systemic-racism-racialization-and-lives">caused by longstanding exclusion and privilege</a> are increasingly being acknowledged as overdue for correction. However, these complex issues are far too often <a href="https://www.engagementinhealthpolicy.ca/blog/unpacking-the-public-in-public-engagement-in-search-of-black-communities">papered over with helpful-sounding but empty rhetoric and symbolic and performative gestures of inclusion</a>.</p>
<p>Over time, more and more people are coming to acknowledge that proclaiming to be inclusive while not actually doing substantive work is simply another tactic for preserving the status quo.</p>
<h2>Health-care disparities</h2>
<p><a href="https://www.engagementinhealthpolicy.ca/research">Our research</a>, as part of the <a href="https://www.engagementinhealthpolicy.ca/">Public Engagement in Health Policy</a> team, examines two key things: </p>
<ol>
<li><p>How, and to what extent, Black communities have been traditionally engaged in health policymaking; and, </p></li>
<li><p>How, through creating their own health-focused solutions and interventions, Black communities’ self-advocacy and mobilization can provide great insight into persistent health system and policy gaps, and what potential solutions can look like.</p></li>
</ol>
<p>In health-care systems, measurable outcomes such as disease prevalence and outcomes and indicators of trust in medical systems show that the system has chronically failed Black communities and is long overdue for systemic change.</p>
<p>The pandemic made these cracks painfully clear and very difficult to ignore.</p>
<p>Black communities in Canada and the United States are at <a href="https://www.academia.edu/43122798/COVID_19_and_the_Black_and_African_Diaspora">higher risk for contracting COVID-19</a>, have been dying at disproportionate and alarming rates, and suffer greater negative economic impacts.</p>
<figure class="align-center ">
<img alt="A health-care worker in PPE about to swab a patient's throat" src="https://images.theconversation.com/files/455493/original/file-20220331-17-uqp83w.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/455493/original/file-20220331-17-uqp83w.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=386&fit=crop&dpr=1 600w, https://images.theconversation.com/files/455493/original/file-20220331-17-uqp83w.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=386&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/455493/original/file-20220331-17-uqp83w.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=386&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/455493/original/file-20220331-17-uqp83w.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=485&fit=crop&dpr=1 754w, https://images.theconversation.com/files/455493/original/file-20220331-17-uqp83w.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=485&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/455493/original/file-20220331-17-uqp83w.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=485&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Black communities in Canada and the United States are at higher risk for contracting COVID-19 and have been dying at disproportionate and alarming rates.</span>
<span class="attribution"><span class="source">THE CANADIAN PRESS/Paul Chiasson</span></span>
</figcaption>
</figure>
<p>We have known for some time that <a href="https://www.who.int/health-topics/social-determinants-of-health#tab=tab_1">social determinants such as race, social class, education and environment</a> influence health outcomes in both everyday and emergency situations.</p>
<p>Resolving the all-too-abundant disparities demands making room to hear from the people who aren’t getting the health care they need, but that isn’t happening enough, and when it does, it clearly isn’t having the necessary effect.</p>
<p>A recent review of <a href="https://www.engagementinhealthpolicy.ca/blog/looking-back-on-20-years-of-public-engagement">government-initiated public and patient engagement activities in health policy from 2001-21</a> showed that only 14 per cent of 132 cases even mentioned prioritizing or engaging with marginalized populations.</p>
<p>All this raises the question, who really is “the public” in public engagement — and how legitimate and effective can such processes be when there are such critical gaps in representation and voice?</p>
<p>In response to this question, some scholars have argued that activities engaging the public in creating health policy are often merely performative “<a href="https://doi.org/10.1080/17448689.2016.1213505">spectacles of public participation</a>.”</p>
<p>They are prone to <a href="https://publications.gc.ca/site/archivee-archived.html?url=https://publications.gc.ca/collections/collection_2012/ccs-hcc/H174-33-2006-eng.pdf">political interference, are often inadequately resourced and can result in unfulfilled expectations</a>. They can also be self-selecting and deliberately <a href="https://www.engagementinhealthpolicy.ca/blog/looking-back-on-20-years-of-public-engagement">designed to make inclusive engagement difficult</a>.</p>
<p>Critical scholars have also pointed to <a href="https://doi.org/10.1177%2F00953997211034137">processes that favour amenable, acquiescent perspectives that do not disrupt the status quo</a>, while devaluing, co-opting and delegitimizing dissenting and critical voices.</p>
<h2>Critical questions</h2>
<p>If we are prepared to reckon with why this is happening, there are some critical questions we should be asking as researchers, health-care providers, activists and policy-makers.</p>
<p>What do we think we know about the needs and desires of Black communities in Canada as it relates to their health, and where does this knowledge come from? How have we historically engaged Black communities in health policy-making in Canada? To what extent are Black communities actually represented in the public engagement processes we speak about? Are we even evaluating which communities our public engagement processes actually engage?</p>
<figure class="align-center ">
<img alt="Three people sitting at a table with laptops; two are watching the third as she speaks" src="https://images.theconversation.com/files/455731/original/file-20220401-25-p69x6g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/455731/original/file-20220401-25-p69x6g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=401&fit=crop&dpr=1 600w, https://images.theconversation.com/files/455731/original/file-20220401-25-p69x6g.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=401&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/455731/original/file-20220401-25-p69x6g.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=401&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/455731/original/file-20220401-25-p69x6g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/455731/original/file-20220401-25-p69x6g.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/455731/original/file-20220401-25-p69x6g.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Some scholars have argued that activities engaging the public in creating health policy are often merely performative ‘spectacles of public participation.’</span>
<span class="attribution"><span class="source">(Nappy.co)</span>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
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</figure>
<p>What challenges have we encountered when attempting to engage Black communities in these processes, and to what do we attribute these challenges?</p>
<p>Why are we not more alarmed by the disparities in outcomes for Black and other marginalized communities during COVID-19 and more broadly?</p>
<p>These are not technical issues but existential questions about the efficacy of our health systems and policies, and who these systems are traditionally designed to serve.</p>
<p>Finally, while there is vital “grey” or non-academic data captured by practitioners and community organizations (such as white papers, research reports, governmental publications, and policy, organizational and institutional analyses), it is essential that the health needs and experiences of Black communities in Canada be studied rigorously and ethically and reflected in academic literature.</p>
<p>It is therefore <a href="https://spon.ca/how-canadas-racial-data-gaps-can-be-hazardous-to-your-health/2019/02/07/comment-page-1/">critical that we continue to advocate</a> for the <a href="https://www.wellesleyinstitute.com/wp-content/uploads/2021/08/Tracking-COVID-19-Through-Race-Based-Data_eng.pdf">collection of race-based health data across Canada</a> to strengthen <a href="https://www.broadbentinstitute.ca/addressing_economic_racism_in_canada_s_pandemic_response_and_recovery">health-equity discussions and policy reform</a>.</p>
<h2>Veneer of action</h2>
<p>One of the profound impacts of the Black Lives Matter movement, particularly following the murders of George Floyd and Breonna Taylor, has been growing exasperation with the ways <a href="https://rsc-src.ca/en/covid-19/covid-19-pandemic-histories-inequities-unveiled-impact-black-communities">politicians and institutions often feign ignorance</a> about the <a href="https://rsc-src.ca/en/covid-19/impact-covid-19-in-racialized-communities/black-immigrants-oscillating-between-covid-19-and">systemic barriers and forms of violence</a> Black communities have long faced in their daily lives.</p>
<p>Symbolic acts of anti-racism that present a veneer of action rather than substantive structural change only add insult to injury. For example, when engaging marginalized communities, <a href="https://www.engagementinhealthpolicy.ca/blog/unpacking-the-public-in-public-engagement-in-search-of-black-communities">recruiting methods often favoured privileged populations</a>, and one-off methods such as surveys were common, rather than substantively engaging marginalized communities in problem-solving. </p>
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<img alt="A man with his hands in the air speaking to others" src="https://images.theconversation.com/files/455945/original/file-20220403-14-1lkj64.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/455945/original/file-20220403-14-1lkj64.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=338&fit=crop&dpr=1 600w, https://images.theconversation.com/files/455945/original/file-20220403-14-1lkj64.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=338&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/455945/original/file-20220403-14-1lkj64.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=338&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/455945/original/file-20220403-14-1lkj64.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=424&fit=crop&dpr=1 754w, https://images.theconversation.com/files/455945/original/file-20220403-14-1lkj64.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=424&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/455945/original/file-20220403-14-1lkj64.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=424&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">It is essential that the health needs and experiences of Black communities in Canada be studied rigorously and ethically and reflected in academic literature.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
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</figure>
<p>While we continue to pursue more research, we need simultaneous and courageous conversations at policy tables that begin with a radical new level of honesty.</p>
<p>This means acknowledging that not engaging Black communities meaningfully in health and other policy-making processes has been a critical failure, reflecting a history of systemic racism, marginalization, and political indifference. It needs to be tackled with focus, humility, intentionality, and imagination.</p>
<p>In other words, what got us here won’t get us there.</p>
<p>We also need to understand that Black communities are not sitting by idly in a burning house waiting to be engaged. They are often out there, <a href="https://blackhealthalliance.ca/covid-19/">self-mobilizing</a>, developing <a href="https://www.instagram.com/eriethiocovid/?hl=en">systems of mutual aid</a>, building <a href="https://www.taibuchc.ca/en/">sophisticated community infrastructure</a> and <a href="https://blackhealthmatterscovid19.ca/about/">making their voices and demands heard</a>. This work should be visible, lauded and properly resourced — not sidelined.</p>
<p>All forms of consultation and decision-making require openness to diverse views, which means shifting away from the top-down approaches governments have traditionally employed in forming health policy.</p>
<p>To be truly transformative, public engagement in health policy <a href="https://doi.org/10.1111%2Fj.1467-9248.2006.00612.x">must reflect the agency, diversity, and interconnectivity of all communities</a>.</p>
<p>With that said, if we begin any of this work without Black and other underserved communities leading these discussions, we have missed the point entirely.</p><img src="https://counter.theconversation.com/content/180383/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>This essay was prepared by members of the Public Engagement in Health Policy team, which is funded and supported by the Future of Canada Project at McMaster University. </span></em></p><p class="fine-print"><em><span>Rhonda C. George does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>While policy organizations publicly claim that they want input from racialized and other marginalized communities, many fail to listen to, accept or integrate what those communities have to say.Alpha Abebe, Assistant Professor, Faculty of Humanities, McMaster UniversityRhonda C. George, Researcher, Faculty of Humanities, McMaster UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1583432021-05-03T13:57:16Z2021-05-03T13:57:16ZCensus 2021: Canadians are talking about race. But the census hasn’t caught up.<figure><img src="https://images.theconversation.com/files/396394/original/file-20210421-19-x9f194.jpg?ixlib=rb-1.1.0&rect=9%2C0%2C6272%2C4181&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">This May, people across Canada will be asked to fill out the 2021 census.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>This May, Canadians will again be asked if they identify as a member of a set list of minority groups when filling out the <a href="https://www.statcan.gc.ca/eng/statistical-programs/instrument/3901_Q2_V6">long-form census</a>. That data is used to measure the portion of Canada’s population that are designated as visible minorities, a concept and term increasingly out of step with the times.</p>
<p>The pandemic has laid bare <a href="https://doi.org/10.1016/S0140-6736(21)00215-4">racial inequalities</a>, and racial justice activist groups, like <a href="https://www.blacklivesmatter.ca/">Black Lives Matter</a>, have put anti-Black racism high on the public agenda. Systemic racism, rather than visible minority status, is at the centre of debate. While Canadians are now talking more explicitly about race, the census has yet to catch up. </p>
<p>“We’re going to have to ask ourselves, what do we want to do with that category now?” says Michael Haan, a demographer and member of <a href="https://www.statcan.gc.ca/eng/about/relevant/aceis">a committee</a> that advises Statistics Canada on ethnocultural diversity. According to him, the committee has had many internal debates about terminology. </p>
<h2>Indirectly asking questions</h2>
<p>Canada’s <a href="https://www.canada.ca/en/canadian-heritage/campaigns/anti-racism-engagement/anti-racism-strategy.html">anti-racism strategy</a>, which draws on decades’ worth of research, states that race is a social construct. There is no basis for classifying people according to race, but racial bias and discrimination have very real effects. </p>
<p>The question is: How do we get relevant data from the census and other surveys on the impact of systemic racism?</p>
<p>Statistics Canada tries to gather this information without directly asking about race. Race-based data is needed, says Jean-Pierre Corbeil, a diversity specialist at Statistics Canada. But he wonders whether that actually requires referring to race on the census.</p>
<p>Historically, the government has been reluctant to ask directly about race, which has led to a lack of disaggregated data. After the Second World War, the census used indirect methods of estimating the non-white, non-Indigenous population through racial proxies like language or ethnocultural origin.</p>
<p>That changed in 1996, says political scientist Debra Thompson, when Statistics Canada began asking Canadians whether they identified as a visible minority. The term, Thompson notes, makes it seem “that things are not about race when of course they absolutely are.”</p>
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<iframe width="440" height="260" src="https://www.youtube.com/embed/YnGOR_W7Ca0?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Statistics Canada advertisement explaining the 2021 census.</span></figcaption>
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<h2>Identifying as a visible minority</h2>
<p>The question on visible minorities was added to the census because of the <a href="https://laws-lois.justice.gc.ca/eng/acts/E-5.401/">Employment Equity Act</a>. In order to measure how the white versus the non-white population fares in the labour market as required by this law, the government needed to know who is a visible minority.</p>
<p>For the purposes of the Employment Equity Act, says Haan, the question works. But he acknowledges the drawbacks: “Is it a perfect facsimile of race or racialization? No, it’s not.”</p>
<p>Many criticized, and still criticize the government’s approach. The <a href="https://undocs.org/en/CERD/C/CAN/CO/21-23">United Nations</a> has repeatedly pointed out that the term “visible minority” lumps together diverse communities and threatens to erase differences among them. Corbeil says Statistics Canada is well aware of the criticism.</p>
<h2>Not easily done</h2>
<p>However, changing the terminology is politically sensitive. Moving away from it would likely require changing the Employment Equity Act, says Fo Niemi, head of Montreal-based <a href="http://www.crarr.org/">Center for Research-Action on Race Relations</a>.</p>
<p>Instead, Statistics Canada is trying to <a href="https://www.statcan.gc.ca/eng/transparency-accountability/disaggregated-data">respond to the demand</a> for more race-disaggregated data through special crowdsourced surveys and increasing sample sizes of marginalized people to allow for enhanced analysis. </p>
<p>For example, with support from <a href="https://www.canada.ca/en/canadian-heritage/campaigns/federal-anti-racism-secretariat.html">the federal Anti-Racism Secretariat</a>, it has produced a <a href="https://www150.statcan.gc.ca/n1/daily-quotidien/200225/dq200225b-eng.htm">socio-economic analysis</a> on the Black population.</p>
<p>During the pandemic, <a href="https://www150.statcan.gc.ca/n1/pub/45-28-0001/2020001/article/00079-eng.htm">census data</a> has also been combined with other statistics to show that mortality rates are higher in neighbourhoods where <a href="https://www.publichealthontario.ca/-/media/documents/ncov/epi/2020/06/covid-19-epi-diversity.pdf?la=en">visible minorities</a> live.</p>
<p>“What people want is really to have information on Black Canadians, to have information on South Asians or Latin American Canadians,” says Corbeil. But those categories are controversial too. White, South Asian, Chinese, Black, Filipino, Latin American, Arab, Southeast Asian, West Asian, Korean or Japanese are options non-Indigenous Canadians can choose from on the census. “Other” is also an option, but many feel unrepresented by the list. </p>
<h2>Expand or shorten the list?</h2>
<p>The <a href="https://www12.statcan.gc.ca/census-recensement/2016/ref/dict/pop111-eng.cfm">population groups</a>, as Statistics Canada calls them, have remained largely unchanged since 1996. The agency uses the list, which was developed through an inter-departmental process in the 1980s — according to Thompson, how the groups were chosen is “a bit of a mystery.”</p>
<p>They are now part of Canada’s <a href="https://www150.statcan.gc.ca/n1/en/pub/11-627-m/11-627-m2020051-eng.pdf?st=Y0TeYIKr">national statistical standards</a> and are widely used by the federal government, including in the monthly labour force survey, which began recording visible minority status as of <a href="https://www150.statcan.gc.ca/n1/daily-quotidien/200807/dq200807a-eng.htm">July 2020</a>. </p>
<p>Statistics Canada has considered changing the list. One alternative was to expand it, but that risked making the answers too similar to the <a href="https://www12.statcan.gc.ca/census-recensement/2021/ref/98-20-0001/982000012020002-eng.cfm">separate ethnocultural origin question</a>. Another was to shorten the list and provide broader categories. Statistics Canada even tested this approach in a 2019 trial run of the census. Respondents had to choose their “descent” from seven options: North American; Latin American; European; North African; African, Afro-Caribbean or African-Canadian; Middle Eastern or West Asian; and Other Asian. </p>
<p>But according to Corbeil, the problem there was that Statistics Canada couldn’t identify who was Black because Black Canadians are highly diverse and come from all over the world. That’s important, because the agency’s consultations indicate that “many people want to identify as Black Canadians,” says Corbeil. Because the test was inconclusive, the options have not been changed for the 2021 census.</p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/whats-in-a-word-how-to-confront-150-years-of-racial-stereotypes-dont-call-me-resilient-153790">What's in a word? How to confront 150 years of racial stereotypes: Don't Call Me Resilient</a>
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<h2>Changing the census isn’t so simple</h2>
<p>Dr. Andrew Pinto, a public health and preventive medicine specialist and family physician, is a researcher with <a href="https://upstreamlab.org/2020/04/15/data-on-race-covid19/">The Upstream Lab</a>, which has studied the collection of racial data by health-care providers, says that if patients understand that disclosing their race will be used to address systemic racism, they are willing to provide the information.</p>
<p>For now, Statistics Canada is reluctant to refer directly to race anywhere on the census. The agency is cautious and for good reasons, says Haan. In order to compare data over time, the questions and the answers need to stay the same. “The census is the gold standard,” he says, “so any modification is carefully considered.”</p>
<p>Thompson also cautions that simply having the data won’t solve the problem of systemic racism.</p>
<p>“Yes, we need disaggregated racial data. [But] we also need governments that are brave enough to create targeted policies.”</p>
<p><em>This is a corrected version of a story originally published on May 3, 2021. The earlier story said Canadians will be asked if they identify as a visible minority. The long-form census doesn’t use the term “visible minority,” but Statistics Canada still uses the term in its analysis of census data in accordance with the Employment Equity Act.</em></p><img src="https://counter.theconversation.com/content/158343/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Bryony Lau does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>As the conversation about race and diversity becomes more common, why haven’t we updated our census to reflect that?Bryony Lau, Dalla Lana Fellow, University of TorontoLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1383722020-09-14T20:52:34Z2020-09-14T20:52:34ZRace-based COVID-19 data may be used to discriminate against racialized communities<figure><img src="https://images.theconversation.com/files/357528/original/file-20200910-14-1o27r9i.jpeg?ixlib=rb-1.1.0&rect=0%2C0%2C4608%2C3069&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Calls for more race-based data fail to consider the many risks associated with collecting it. </span> <span class="attribution"><span class="source">(Julian Wan/Unsplash) </span></span></figcaption></figure><p>For some, the current demands for race-based data reflect a desire to ensure the experiences of anti-Black discrimination in Canada during the pandemic are not denied or erased. But there are other more powerful forces clamouring for Canada’s race-based data, and the well-being of Black communities is not at the top of their minds.</p>
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Read more:
<a href="https://theconversation.com/collecting-race-based-data-during-coronavirus-pandemic-may-fuel-dangerous-prejudices-137284">Collecting race-based data during coronavirus pandemic may fuel dangerous prejudices</a>
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<p>In April, the Ontario government posted the <a href="https://www.ontariocanada.com/registry/showAttachment.do?postingId=32590&attachmentId=43697">Digital Health Information Exchange Policy</a> that comes into effect on Oct. 1. The policy makes it easier for someone’s data to move among companies, organizations and institutions, and without someone’s knowledge or consent.</p>
<p>Health data is a hot commodity. Global earnings related to health data management systems — also known as electronic health and electronic medical records (EHRs/EMRs) — <a href="https://www.thechronicleherald.ca/news/local/with-billions-at-stake-huge-companies-bid-for-electronic-health-records-worldwide-253345/">are forecast to exceed US$36 billion by 2021</a>.</p>
<p><a href="https://blog.definitivehc.com/top-canadian-hospitals-ehr-vendors">In Canada, five companies dominate the EHR/EMR market</a>, with Google about to join. As the largest data mining company in the world, <a href="https://www.theverge.com/2020/3/10/21173077/congress-antitrust-google-search-klobuchar-bill-letter-monopoly">Google’s ability to gobble up the competition is unparalleled</a>.</p>
<p><a href="https://www.thestar.com/news/investigations/2019/02/20/medical-record-software-companies-are-selling-your-health-data.html">Currently, personal health data has been rapidly repurposed without consent, in ways previously not imagined</a>. This is amplified by the <a href="https://www.thestar.com/news/investigations/2019/02/21/privacy-commissioner-to-investigate-sale-of-health-data.html">potential for profit</a>.</p>
<p>Amazon’s deal-making during the pandemic <a href="https://pressprogress.ca/federal-government-wont-disclose-details-of-new-contract-with-amazon-to-manage-canadas-covid-19-supplies/">now includes a new contract with Canada’s federal government for personal protective equipment (PPE)</a>. That puts Amazon right in the middle of our publicly funded universal health care logistics, with access to a robust cache of data.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/357994/original/file-20200914-18-1y54192.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Ontario Premier Doug Ford looks on as Ontario Health Minister Christine Elliott stands at a podium" src="https://images.theconversation.com/files/357994/original/file-20200914-18-1y54192.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/357994/original/file-20200914-18-1y54192.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=405&fit=crop&dpr=1 600w, https://images.theconversation.com/files/357994/original/file-20200914-18-1y54192.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=405&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/357994/original/file-20200914-18-1y54192.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=405&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/357994/original/file-20200914-18-1y54192.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=509&fit=crop&dpr=1 754w, https://images.theconversation.com/files/357994/original/file-20200914-18-1y54192.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=509&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/357994/original/file-20200914-18-1y54192.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=509&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Ontario Premier Doug Ford looks on as Ontario Health Minister Christine Elliott announces the COVID Alert application during the daily briefing at Queen’s Park in Toronto in June 2020.</span>
<span class="attribution"><span class="source">THE CANADIAN PRESS/Jack Boland</span></span>
</figcaption>
</figure>
<h2>The false promise of anonymity</h2>
<p>Tech, privacy and health data experts warn that we must remain vigilant and cautious with tech companies. Investigative journalists <a href="https://thelogic.co/news/exclusive/foreign-tech-giants-have-more-than-tripled-their-lobbying-since-justin-trudeau-became-prime-minister/">have already uncovered secret deals between the government and data-driven tech corporations</a>, <a href="https://www.theguardian.com/technology/2019/nov/12/google-medical-data-project-nightingale-secret-transfer-us-health-information">unethical conduct</a> and <a href="https://www.thestar.com/news/canada/2017/07/29/doctors-use-this-software-during-patient-visits-now-big-pharma-is-tapping-it-to-sell-their-drugs.html">failed track records when it comes to health and data privacy</a>. </p>
<p>Claims that <a href="https://www.careersinfosecurity.com/patient-data-be-truly-de-identified-for-research-a-12708">our health data are protected due to de-identification or anonymization ring hollow</a>. Data can be re-identified or de-anonymized by <a href="https://techcrunch.com/2019/07/24/researchers-spotlight-the-lie-of-anonymous-data/">linking health-care data to other information</a>. As privacy lawyer David Holtzman indicated, “<a href="https://www.careersinfosecurity.com/patient-data-be-truly-de-identified-for-research-a-12708">the widespread availability of new tools and technologies makes the current de-identification standards meaningless</a>.” </p>
<p>So why are we being lulled into a false sense of security?</p>
<p>The European Union and the United Kingdom are protecting their citizens’ data, halting the predatory behaviour of tech companies within their jurisdictions. Canada is wide open, comparatively speaking, and as such, Canadian data has become an attractive target for companies seeking to profit from health data. </p>
<p>These companies use the data to inform predictive algorithms used by health systems planners. This is of particular concern because it has been repeatedly demonstrated that <a href="https://www.npr.org/2018/01/26/580617998/cathy-oneil-do-algorithms-perpetuate-human-bias">algorithms reinforce bias</a>. Algorithms are increasingly <a href="https://www.theguardian.com/science/2016/sep/01/how-algorithms-rule-our-working-lives">dictating our choices, interests, insurance rates, access to loans, housing, job opportunities and more</a>.</p>
<h2>Data harms and benefits</h2>
<p>Research by scholars like sociologist <a href="https://www.wiley.com/en-ca/Race+After+Technology:+Abolitionist+Tools+for+the+New+Jim+Code-p-9781509526437">Ruha Benjamin</a> and mathematician <a href="https://weaponsofmathdestructionbook.com/">Cathy O'Neil</a> reveal how data collection and discriminatory algorithms pose the <a href="https://www.scientificamerican.com/article/will-democracy-survive-big-data-and-artificial-intelligence">greatest threat to minoritized people and democratic processes</a>.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/bjtOWURDYao?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">A conversation about data between the author and mathematician Cathy O'Neil.</span></figcaption>
</figure>
<p>Benjamin’s scholarship reveals that Black communities are <a href="https://www.theguardian.com/technology/2019/oct/03/google-data-harvesting-facial-recognition-people-of-color">the primary targets and recipients of algorithmic racism</a>. Without laws that protect data from data brokers, we have no way of knowing where or how our data is being used, and by whom.</p>
<p>Adding more <a href="https://www.vice.com/en_ca/article/m7jv7q/edmonton-community-solutions-accelerator-between-police-and-tech-has-activists-worried">race-based markers to small populations</a> — like the Black population in Canada — increases the risk of re-identification by corporations, surveillance agencies and tech companies that <a href="https://www.technologyreview.com/2019/10/08/75349/meet-americas-newest-military-giant-amazon/">hold massive global, military and security contracts</a>.</p>
<h2>Impact in Ontario</h2>
<p>If the Ontario government continues on the austerity path and <a href="https://www.theglobeandmail.com/canada/article-ford-government-reveals-health-services-to-be-delisted-from-ohip/">delists additional health services</a>, what are the implications — especially for marginalized populations — of adding detailed socio-demographic data to health records? </p>
<p>For example, how will data labelled as Black, poor, disabled or all three impact a person’s insurance rates? Current legislation will not protect patients from <a href="https://www.forbes.com/sites/lanceeliot/2020/01/04/overcoming-racial-bias-in-ai-systems-and-startlingly-even-in-ai-self-driving-cars/">this type of algorithmic discrimination</a>. Only updated data laws can protect us from <a href="https://www.technologyreview.com/s/612876/this-is-how-ai-bias-really-happensand-why-its-so-hard-to-fix/">the perils of monetized data and the discriminatory algorithms they are generating</a>.</p>
<p>Right now, the data pouring in about how COVID-19 is affecting Black communities in the United States has not affected the rising death toll. Predictably, in the U.S., race-based data has already been used to <a href="https://www.technologyreview.com/2020/06/03/1002589/technology-perpetuates-racism-by-design-simulmatics-charlton-mcilwain/">undermine Black people</a>, <a href="https://www.queensu.ca/gazette/stories/collecting-race-based-data-during-pandemic-may-fuel-dangerous-prejudices">their health and dignity</a>. And in Canada, it’s more of the same: in Nova Scotia, <a href="https://www.halifaxexaminer.ca/province-house/daily-covid-19-update-covid-19-hits-the-black-community-with-a-predictable-racist-response/">two African Canadian communities were singled out by the province’s</a> chief medical officer of health. The political will to act and protect Black people in the U.S. and in Canada is still missing. </p>
<h2>Protecting rights</h2>
<p>At minimum, Canadians must demand new data laws, enforceable penalties and the resources to be proactive. </p>
<p>If the purpose of collecting race-based data is to address anti-Black racism, equity or accountability, then the <a href="https://rede4blacklives.com/blog/2020/05/29/covid-symposium-part-2/">priority must be anti-Black racism</a>. </p>
<p>Do the risks of race-based data outweigh the harms? The stakes are much higher, and <a href="https://www.democracynow.org/2020/6/26/racist_facial_recognition_technology_joy_buolamwini">more insidious and dangerous</a> than we were led to believe. </p>
<p>Personal information, including health data, must be protected whether it is identifiable, de-identified or anonymized. Laws, regulation, policies and substantive enforceable penalties are the minimum pre-conditions that must be in place before more race-based data is collected and circulated.</p><img src="https://counter.theconversation.com/content/138372/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>LLana James does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>The COVID-19 pandemic has led to calls for the collection of race-based data. But the risks of algorithmic discrimination must be addressed.LLana James, PhD Candidate, Faculty of Medicine, University of TorontoLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1372842020-05-27T16:41:35Z2020-05-27T16:41:35ZCollecting race-based data during coronavirus pandemic may fuel dangerous prejudices<figure><img src="https://images.theconversation.com/files/336560/original/file-20200520-152315-1ypwkoa.jpg?ixlib=rb-1.1.0&rect=121%2C110%2C6952%2C4792&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Racially sorted patients are surveilled, often with negative consequences.</span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><p>Brian Sinclair wheeled himself into a Winnipeg emergency room in September 2008 seeking assistance with his catheter bag. He had a bladder infection, but instead of receiving treatment, remained in the waiting room for 34 hours until his body — now lifeless — finally received medical attention. </p>
<p>Sinclair was an Indigenous man who hospital staff believed was there “<a href="https://globalnews.ca/news/4445582/brian-sinclair-health-care-racism/">to watch TV</a>,” <a href="https://www.youtube.com/watch?v=NITrHzxbhKw">appeared “intoxicated”</a> and was simply “<a href="https://www.youtube.com/watch?v=NITrHzxbhKw">sleeping it off</a>.” He was arguably triaged within what scholars of Indigenous histories Mary Jane Logan McCallum and Adele Perry call <a href="https://uofmpress.ca/books/detail/structures-of-indifference">a “highly racialized” health-care system</a>. </p>
<p>Sinclair’s case shows how <a href="https://fernwoodpublishing.ca/book/punched-drunk">stereotypes of indigeneity in Canada</a> can influence patient care with fatal consequences. More broadly, this adds to trends of <a href="https://www.routledge.com/Coming-to-Terms-with-Chance-Engaging-Rational-Discrimination-and-Cumulative/Gandy/p/book/9781138260474">cumulative disadvantage</a>, where negative circumstances that affected population groups in the past continue to affect the same groups today.</p>
<p>Is there a risk that the COVID-19 pandemic will fuel such trends in Canada, especially against the backdrop of the country’s racialized past? As a sociologist, my answer to this question is yes. </p>
<p>As a researcher affiliated with the <a href="https://www.sscqueens.org/">Surveillance Studies Centre</a>, I am also concerned with how racially sorted patients are surveilled, often with negative consequences. Therefore, as a privacy and ethics officer evaluating health data for Ontario’s <a href="https://news.ontario.ca/mohltc/en/2020/04/province-developing-new-health-data-platform-to-help-defeat-covid-19.html">Pandemic Threat Response (PANTHR)</a>, I caution the Ministry of Health and its partners against the use of race- and ethnicity-based health data in dealing with COVID-19.</p>
<h2>Collecting race data for good medicine?</h2>
<p>Canada’s attention to race during the first 100 years of immigration policy shaped aspirations of a settler colonial “<a href="https://youtu.be/mhr1Ucr7qlc?t=66">White Canada Forever</a>.” Unsurprisingly, historical racial inequalities shape Canadian experiences in health care. </p>
<p>Dr. Kwame McKenzie of Toronto’s <a href="https://www.wellesleyinstitute.com/">Wellesley Institute</a> believes that <a href="https://youtu.be/beQSp5Zbvpk?t=5">race-based data is essential for “good medicine.”</a> And many additional doctors and scholars believe that <a href="https://theconversation.com/coronavirus-discriminates-against-black-lives-through-surveillance-policing-and-the-absence-of-health-data-135906">collecting race data might improve understandings of the social determinants of health</a>.</p>
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<figcaption><span class="caption">A few local Canadian authorities have started tracking the racial data of those infected with COVID-19.</span></figcaption>
</figure>
<p>However, when race data is collected to understand the social determinants of health, it could inadvertently <a href="https://doi.org/10.1177%2F0957926504043707">legitimate biological understandings of race</a>. This is an essentialist position that necessarily ties the racial attributes and behaviours of one person to another. </p>
<p>Further, when race data is used in these circumstances, it creates more scope to arrive at racist responses to a pandemic than it does to address social vulnerabilities like <a href="https://www.youtube.com/watch?v=MA4ZfJoREZg">the poor work conditions of minority populations in essential services</a>. </p>
<h2>Linking race and health</h2>
<p>Alberta’s Chief Medical Officer of Health, Dr. Deena Hinshaw, <a href="https://www.thestar.com/news/canada/2020/04/10/race-based-coronavirus-data-not-needed-in-canada-yet-health-officials-say.html">acknowledges that systematic racism disadvantages certain populations</a>. However, Hinshaw has not yet committed to collecting such data. Initially, her Ontario counterpart, Dr. David Williams, said the province would focus on age and chronic illness “regardless of race, ethnic or other backgrounds.” Ontario now says <a href="https://toronto.citynews.ca/2020/05/06/ontario-to-begin-collecting-race-based-data-during-coronavirus-pandemic/">it will collect race-based data</a> during the pandemic.</p>
<p>Williams’ revised position certainly eases tensions with a coalition of Black health leaders that has called for attention to race. </p>
<p>Endorsed by 192 organizations and 1,612 individuals, the coalition wrote an <a href="https://www.allianceon.org/news/Letter-Premier-Ford-Deputy-Premier-Elliott-and-Dr-Williams-regarding-need-collect-and-use-socio">open letter</a> to Ontario Premier Doug Ford and other provincial officials. It argues for “the collection and use of socio-demographic and race-based data in health and social services … as it relates to COVID-19.” </p>
<p>But the use of race data may be problematic because links between health conditions and race have been connected to discriminatory outcomes in the past.</p>
<h2>Race-based medical practice</h2>
<p>Diseases like Tay-Sachs and sickle cell anemia <a href="https://www.jstor.org/stable/20058712">have discursively been described as a “Jewish disease” and “Black disease” respectively at least since the early 1900s</a>, even though these associations with races <a href="https://doi.org/10.1080/13557858.2010.541902">can lead to inaccuracies</a> in terms of who is deemed high risk. Moreover, racializing these diseases reinforced discriminatory notions of race that were tied to other policies of racial oppression, such as <a href="https://www.upress.umn.edu/book-division/books/testing-fate">anti-immigrationism</a>.</p>
<p>Because <a href="http://doi.org/10.1056/NEJMp1511294">race data are routinely associated with medical conditions and treatment</a>, many medical doctors turn to race as <a href="https://www.upress.umn.edu/book-division/books/testing-fate">illness inducing</a>, instead of examining an individual’s symptoms, individual patient history or family history. </p>
<p>Racial categories are therefore deemed scientific, despite their <a href="https://scholarship.law.umn.edu/mjlst/vol12/iss1/3/">unscientific construction</a>.</p>
<h2>Racializing COVID-19</h2>
<p>If race-based data collection is to be attached to COVID-19 in Ontario, then attention should be given to what happens when medical conditions are associated with one’s race. </p>
<p>What happens when a disease is racialized? One example of the racializing of COVID-19 are the many <a href="https://montreal.ctvnews.ca/anti-asian-racism-on-the-rise-in-canada-s-biggest-cities-amid-covid-19-crisis-poll-1.4913957">cases of anti-Asian racism across North America</a> ignited by <a href="https://nationalpost.com/opinion/conrad-black-on-covid-19-the-world-succumbed-to-a-pandemic-of-hysteria-more-than-a-virus">xenophobic hysteria</a>. </p>
<p>Another example comes from China where a McDonald’s franchise in Guangzhou <a href="https://www.bbc.com/news/world-asia-china-52274326">allegedly posted a sign</a> in April reading, “We’ve been informed that from now on Black people are not allowed to enter the restaurant” because of “rumours” that coronavirus was spreading among African people. </p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1250472106766327809"}"></div></p>
<p>If surveillance is the <a href="https://www.wiley.com/en-ca/Surveillance+Studies%3A+An+Overview-p-9780745635927">attention to human attributes and behaviours</a> so that people can be “<a href="https://www.routledge.com/Surveillance-as-Social-Sorting-Privacy-Risk-and-Automated-Discrimination/Lyon/p/book/9780415278737">socially sorted</a>” and potentially treated differently, then the systematic collection of race data is also a form of surveillance. </p>
<p>When rumours like those in the McDonald’s example are connected to reports generated through <a href="https://www.cdc.gov/coronavirus/2019-ncov/cases-updates/cases-in-us.html">racial surveillance by leading health agencies that monitor COVID-19 by race</a> (like the U.S. Centers for Disease Control and Prevention), then the racial dimensions of the virus can further fuel xenophobia. </p>
<p>Therefore, a call for <a href="https://www.dukeupress.edu/dark-matters">increased racial surveillance potentially fuels racism</a>. </p>
<h2>Measuring race, fuelling racism</h2>
<p>Health scholars have raised concerns about “<a href="https://theconversation.com/coronavirus-is-not-the-great-equalizer-race-matters-133867">… how anti-Black racism, anti-Indigenous racism and other forms of intersectional violence will impact the health of our communities during this crisis</a>.” </p>
<p>In the open letter from the coalition of Black health leaders to Ontario’s political leaders, a case is made for collecting race data because, “<a href="https://www.allianceon.org/news/Letter-Premier-Ford-Deputy-Premier-Elliott-and-Dr-Williams-regarding-need-collect-and-use-socio">We cannot address what we cannot measure</a>.” But can race be measured?</p>
<p>What determines the boundary between one race and another, especially if self-identification means that race is a subjective term, not a medically objective one? </p>
<p>Prejudicial inferences from race-based data are of significant concern. It is these prejudices, contributing to historical trends of racism, that we are reminded of when recalling Brian Sinclair’s tragic death in a Winnipeg ER. </p>
<p>It is these prejudices that are fuelled by collecting race data for health care, especially when coupled with public hysteria during a pandemic.</p><img src="https://counter.theconversation.com/content/137284/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Sachil Singh does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>The COVID-19 pandemic presents potentially concerning trajectories for race relations. Many of these concerns might even originate within the medical profession.Sachil Singh, Adjunct Assistant Professor (Sociology), and Associated Faculty member (Surveillance Studies Centre), Queen's University, OntarioLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1368222020-04-30T20:12:05Z2020-04-30T20:12:05ZRace-based health data urgently needed during the coronavirus pandemic<p>A one-size-fits-all approach to COVID-19 does not work.</p>
<p>David Williams, Ontario’s chief medical officer of health, recently said the province will not collect data on race and other indicators of who is being hardest hit by the COVID-19 pandemic, saying, “<a href="https://www.thestar.com/news/canada/2020/04/10/race-based-coronavirus-data-not-needed-in-canada-yet-health-officials-say.html">regardless of race, ethnic or other backgrounds, they’re all equally important to us</a>.” Williams says he’s following the guidance of the World Health Organization (WHO) and he’s not alone.</p>
<p>No Canadian province or territory currently collects these data, although Alberta’s Chief Medical Health Officer Deena Hinshaw <a href="https://www.thestar.com/news/canada/2020/04/10/race-based-coronavirus-data-not-needed-in-canada-yet-health-officials-say.html">committed last week</a> to looking into it in partnership with First Nations communities. A spokesperson for the Public Health Agency of Canada similarly said the federal government has “<a href="https://www.cbc.ca/news/canada/toronto/race-coronavirus-canada-1.5536168">no plans</a>” to collect disaggregated data on social determinants of health as risk factors for COVID-19.</p>
<p>There are <a href="https://nationalpost.com/pmn/news-pmn/canada-news-pmn/covid-19-spreads-in-homeless-shelter-who-seeks-funds-in-the-news-for-april-25">outbreaks in shelters</a>, among <a href="https://www.cbc.ca/news/canada/windsor/kent-bridge-greenhouse-covid19-1.5546188">migrant farm workers</a> and in long-term care homes. <a href="https://egale.ca/egale-in-action/covid19-impact-report/">LGBTQI2S people</a> have been harder hit by economic shutdowns. </p>
<p>Meanwhile, <a href="https://www.theglobeandmail.com/canada/toronto/article-staff-at-toronto-public-health-hq-ordered-home-after-office-hit-by/">temporary closures</a> of consumption and treatment services for people who use drugs <a href="https://ottawacitizen.com/news/local-news/pandemic-one-crisis-too-many-for-those-with-opioid-addiction/">have increased their vulnerability</a>. Public-facing essential workers continue to risk exposure, all pointing to their expendability masked under a one-size-fits-all response. </p>
<h2>No legal barriers to collecting race-based data</h2>
<p>While the provinces are unresponsive to calls for race-based data, there has been some movement. After thousands of people and hundreds of organizations called for <a href="https://www.allianceon.org/news/Letter-Premier-Ford-Deputy-Premier-Elliott-and-Dr-Williams-regarding-need-collect-and-use-socio">the collection of race-based and sociodemographic data</a>, some local public health units in Ontario stepped up to fill the provincial void. </p>
<p><a href="https://www.inbrampton.com/peel-public-health-to-begin-collecting-race-and-occupation-based-data-amid-covid-19-pandemic">Peel</a>, Toronto and London-Middlesex public health units have all announced plans to collect and use sociodemographic and race-based data for contact tracing. </p>
<p>Nationally, groups like the <a href="https://secure.cihi.ca/free_products/Measurement_of_Equity_in_Health_Care_Proceedings_Report_EN.pdf">Pan-Canadian Dialogue to Advance the Measurement of Equity in Health Care</a> continue to advance the conversation. </p>
<p>But the federal and most provincial governments still refuse to act. An Ontario <a href="https://www.thestar.com/news/gta/2020/04/21/toronto-public-health-to-start-collecting-covid-19-data-on-race-in-a-bid-to-track-health-inequities.html">Ministry of Health spokesperson</a> claims that current legislation does not “authorize health information custodians to collect race-based data.” Yet, as researchers in health equity, we know this is possible under current laws, because we and our partners have <a href="http://torontohealthequity.ca/">long gathered data</a> on race and other social factors that affect health and healthcare.</p>
<p>Long before the pandemic, many racialized communities were advocating to advance the systematic collection of race-based data in health care.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/beQSp5Zbvpk?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">There are growing calls for Canada to collect wider demographic data after numbers from the U.S. revealed that racially and economically marginalized people are disproportionately affected by COVID-19.</span></figcaption>
</figure>
<h2>American and international data show us how</h2>
<p>The <a href="https://iris.paho.org/handle/10665.2/51570">WHO says health systems need equity-informed data</a> to take informed action. Strikingly, the <a href="http://www.health.gov.on.ca/en/pro/programs/publichealth/oph_standards/docs/protocols_guidelines/Health_Equity_Guideline_2018_en.pdf">Ontario Public Health Standards</a> require the collection of these data, supported by Williams’ own 2018 report <a href="http://www.health.gov.on.ca/en/common/ministry/publications/reports/cmoh_18/default.aspx">Improving the Odds: Championing Health Equity in Ontario</a>. </p>
<p>The United States does collect race-based data. The evidence shows that <a href="https://www.theguardian.com/world/2020/apr/08/its-a-racial-justice-issue-black-americans-are-dying-in-greater-numbers-from-covid-19">African Americans</a> and <a href="https://www.nbcnews.com/think/opinion/coronavirus-takes-more-native-americans-lives-killing-our-elderly-erases-ncna1189761">Indigenous people</a> are among the hardest hit by the coronavirus. Systemic anti-Black racism has been cited as a root cause of <a href="https://www.nytimes.com/aponline/2020/04/08/us/ap-us-virus-outbreak-race.html">African American health disparities</a>. </p>
<p>If you think these issues only exist south of the Canada-U.S. border, think again. In 2017, the United Nations said they were “<a href="https://documents-dds-ny.un.org/doc/UNDOC/GEN/G17/239/60/PDF/G1723960.pdf?OpenElement">deeply concerned about the human rights situation of African Canadians</a>;” it recommended that race-based data be collected to identify and address the disparities experienced by Black Canadians. </p>
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Read more:
<a href="https://theconversation.com/coronavirus-is-not-the-great-equalizer-race-matters-133867">Coronavirus is not the great equalizer — race matters</a>
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<p>Indigenous health data requires its own strategy, led by and for Indigenous people. Due to historic and present-day practices that misuse data or focus only on negative findings, First Nations, Inuit and Métis peoples, and many Indigenous leaders and communities do not want governments or mainstream healthcare providers <a href="https://doi.org/10.1016/S0140-6736(17)32755-1">collecting and using data about them</a>. Instead, <a href="https://iphcc.ca/">Indigenous-governed health care providers</a> collect and use their own data following the principles of <a href="https://www.afn.ca/uploads/files/nihbforum/info_and_privacy_doc-ocap.pdf">Indigenous data sovereignty</a>.</p>
<h2>Equalizing the COVID-19 response</h2>
<p>This pandemic has shown that a lot can be done given enough political and collective will. Shifting to a health equity response driven by data is doable too. </p>
<p>Of course, data is not the only step needed to ensure an equitable COVID-19 response. Detailed plans for high-risk places like shelters and long-term care homes, stronger protections for low-income essential workers and the inclusion of marginalized communities at decision-making tables are vital, too.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/330879/original/file-20200427-145560-6m6n0x.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/330879/original/file-20200427-145560-6m6n0x.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/330879/original/file-20200427-145560-6m6n0x.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/330879/original/file-20200427-145560-6m6n0x.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/330879/original/file-20200427-145560-6m6n0x.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/330879/original/file-20200427-145560-6m6n0x.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/330879/original/file-20200427-145560-6m6n0x.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">U.S. data shows that the novel coronavirus disproportionately affects Black communities, yet that type of race-based analysis is absent in Canada, leaving Black Canadian families without key information.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
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<p>But collecting race-based health data is an important step — one that can be immediately implemented in the province’s new <a href="https://www.allianceon.org/news/Ontario-must-bring-health-equity-lens-new-COVID-19-test-technologies-and-data-tools">Pandemic Threat Response (PANTHR) data platform</a>. Once that data is integrated into the overall provincial data, it can help direct test kits and personal protective equipment to where they are most needed. Race-based health data is needed to help citizens and residents understand the pandemic’s full impact. </p>
<p>Every day, decisions about the pandemic are made. Transparency in data can ensure that care is available for people who have — so far — been left behind. </p>
<p>We have been able to identify certain groups at increased risk largely due to their location — long-term care homes, shelters, farms. There are likely other groups at increased risk of infection that cannot be identified in this way. Based on U.S. data, Black and Indigenous people are experiencing increased risk of infection and death. We need race-based and other sociodemographic data in Canada in order to determine if any groups are at greater risk, in order to take appropriate supportive action.</p>
<p><em>This is a corrected version of a story originally published April 30, 2020. The earlier story incorrectly stated that York Region in Ontario will collect race-based data for contact tracing.</em></p><img src="https://counter.theconversation.com/content/136822/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Kate Mulligan works for the Alliance for Healthier Communities. She sits on the Toronto Board of Health and the board of the Association of Local Public Health Agencies.</span></em></p><p class="fine-print"><em><span>Jennifer Rayner works for the Alliance for Healthier Communities. </span></em></p><p class="fine-print"><em><span>Onye Nnorom does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Gathering race-based data during the coronavirus pandemic is essential for Indigenous communities, racialized people and those with disabilities and mental health challenges.Kate Mulligan, Assistant Professor, Social & Behavioural Health Sciences, Dalla Lana School of Public Health, University of TorontoJennifer Rayner, Assistant Professor, Centre for Studies in Family MedicineOnye Nnorom, Associate Program Director of the Public Health & Preventive Medicine Residency Program at the University of Toronto, University of TorontoLicensed as Creative Commons – attribution, no derivatives.