Being Counted in Canada’s Coronavirus Data, Ontario’s lack of diversity data for COVID-19 is an embarrassment

2020/04/17 Leave a comment

Two good commentaries on the lack of diversity data, starting with Howard Ramos of Dalhousie:

The lack of COVID-19 data on immigrants and racialized minorities collected and shared by Canada’s many layers of government could lead to health inequities.

Canada is not alone in having a data gap on immigrant and racialized groups. In the United States civil rights groups and doctors have called on its federal government to release demographic data on coronavirus infections.

Analysis that looks at the number of COVID-19 cases based on publicly available American data and census information shows that counties that are majority African-American have three times the rate of infection and almost six times the rate of deaths as counties where white residents are in the majority. It is a trend that has raised alarm across American cities.

Understanding Canada-U.S. differences

Past research suggests, however, that Canadians should be cautious in reaching conclusions and not automatically assume that what takes place in the U.S. naturally holds true north of the border.

The ‘healthy immigrant effect’ debate, for instance, which shows that many newcomers to the country self-report better health than native-born Canadians may mean that immigrants, who are also largely racialized, may not follow the same patterns as seen in the U.S.

What is needed to answer that question, and many others, is access to quality data. And just like personal protective equipment – it is currently in short supply.

Part of the problem in capturing immigrants and racialized groups in health data rests with how they are captured. Health data is largely the domain of provinces and territories, leading to uneven data collection and reporting across them.

When asked if Ontario could offer insights on the pandemic’s impact on racialized communities, Dr. David Williams, the province’s chief medical officer of health, noted that “statistics based on race aren’t collected in Canada unless certain groups are found to have risk factors.”

Ironically, if data are not collected, one cannot tell if a group has risk factors to begin with. This could lead to health inequities for African-Canadian, Indigenous, racialized, and other new Canadians.

That scenario is a big reason why the African, Caribbean and Black Network of Waterloo Region recently launched a petition demanding that data on race, ethnicity, sexual orientation, and socio-economic status be collected and reported on.

Data gap flows all the way to Ottawa

The data-gap is also seen at the federal level too. For instance, the new and innovative crowd sourced survey on the social and economic impacts of COVID-19 run by Statistics Canada measures age and gender but not other demographic features. The same absence is also seen in the Public Health Agency of Canada’s ‘detailed confirmed cases of coronavirus disease’ data, which is hosted by Statistics Canada.

The detailed data does not provide geo-coding or additional information on the location of the cases which means that researchers cannot link it to census tracts or other geographic units to do the kinds of analysis that was done for American communities.

As a result, the maps offered through the interactive Canada’s COVID-19 Situational Awareness Dashboard are fairly coarse. In many cases, more detailed information can be found through non-governmental sites such as ViriHealth. But, once again, sociodemographic characteristics are not provided and the location data is where people are treated over where they live.

Lastly, once Canada begins to move towards recovery, Statistics Canada’s data on job loses and employment can report on immigrants and racialized groups. Much of this data is collected through the Labour Force survey, which is good news. It’s only logical that measures of health and wellbeing be captured with the same level of detail.

If there’s one thing silver lining to Canada’s experience during the COVID-19 pandemic, it’s reinforcing the point that collecting data matters. It’s essential to insure that everyone, regardless of race or ethnicity, is treated equally as citizens.

Source: newcanadianmedia.ca/being-counted-…

Secondly, the Ontario situation by Adam Kassam a Toronto-based physician:

The United States recently earned the unfortunate distinction of having the highest number of COVID-19 cases in the world, at more than 575,000. The true number of infected individuals, of course, is likely much higher given the lack of widespread and available testing.

But in that U.S. data, an alarming trend emerged: The coronavirus appeared to be disproportionately killing African-Americans. Last week, the Centers for Disease Control and Prevention (CDC) released a preliminary report suggesting that there were higher rates of hospital admissions and death among black Americans compared with other communities.

These revelations have intensified a nationwide conversation on the social determinants of health and the necessity to collect better data. The CDC report is far from comprehensive, which has led to presumptive Democratic nominee Joe Biden calling on the organization to be more transparent by releasing more information. Even U.S. President Donald Trump has expressed concern, and instructed his African-American Surgeon-General, Dr. Jerome Adams, to formulate a federal response to address the problem.

This discourse about diversity data and its impact on racialized communities in the U.S. stands in sharp relief against the Canadian experience. Last week, Dr. David Williams, Ontario’s Chief Medical Officer of Health, summarily dismissed calls for the collection of racial data. He asserts that statistics on race aren’t collected unless certain groups are found to have risk factors, and that “regardless of race, ethnic or other backgrounds, they’re all equally important to us.”

We have a problem in this country when Donald Trump sounds more progressive about racial disparities than our own public health officials. Imagine if our Chief Medical Officer of Health claimed that it wasn’t important to collect gender-based data? This would be a fireable offence. It is, therefore, inconceivable that this same official, in the country’s most diverse province, would willfully choose to effectively ignore the unique needs of the nearly four million visible minorities who call Ontario home.

This is the manifestation of structural and systemic biases that have been omnipresent within our medical community for generations. Canada’s poverty of diversity data has been an indefensible blind spot, both in terms of health care and in our educational institutions. It is the symptom of an insidious disease, whose current hallmark is a leadership that looks increasingly less like the communities which it serves.

How else could you explain the dearth of visible minorities in some of the top leadership roles in health care across Ontario? Public Health Ontario’s executive does not appear to include a single visible minority. A visible minority has never served as Ontario’s health minister. And because diversity data of this nature is not collected or made public, we don’t know how many deputy ministers of health, deans of medicine or chiefs of medical departments have represented diverse backgrounds.

In many ways, you only measure what you really care about. Ontario’s Chief Medical Officer has unfortunately made that very clear. Never mind that collecting race-based data wouldn’t be an onerous task; crucially, it is part of good science. Only by intentionally studying diverse populations have we learned that women experience certain health challenges, such as heart attacks, differently from men. In the same vein, disease has been shown to manifest differently for patients from different ethnic backgrounds. It is my belief that all people deserve to know the details of their lives and to know that their lives are worthy of study.

While we don’t know whether racial differences influence COVID-19′s effect on individuals, Canada should be invested in determining this definitively, instead of taking its cues from the World Health Organization.

Early reports from the U.S. have pointed to disadvantaged and marginalized groups – the poor, immigrant, black and brown communities – being more significantly affected, and this has prompted crucial scrutiny of the deep and enduring fault lines between the haves and have-nots. Yet we cannot have those conversations here, as we cannot know whether the U.S. data reflect Canada’s, even though just a border separates us.

In Canada, where we are quick to declare that diversity is our strength, we must now dispense with the empty platitudes and put our money where our mouth is. Our governments should openly commit to funding the collection and publication of diverse health data during and after this pandemic. Their explicit goal should be to create policy that improves the health care of all its citizens. What’s clear is that this ethos will only become a priority when our medical leadership more closely reflects the Canada of today.

Source: Ontario’s lack of diversity data for COVID-19 is an embarrassment: Adam Kassam

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The Studies Behind Canadian Health Care Seem To Have Forgotten Us

2017/10/04 Leave a comment

Valid points. Studies need to reflect the increased diversity of our population:

One of the most important campaigns in Canada has nothing to do with politics. Choosing Wisely Canada is an initiative that aims to curtail the unnecessary tests and treatments in our health-care system. Started in 2014 by a team from the University of Toronto, Canadian Medical Association and St. Michael’s Hospital, Choosing Wisely is part of a global movement that first began in the United States by the American Board of Internal Medicine Foundation. It now spans 20 countries across five continents and includes the majority of medical societies and associations, including those in Canada​​​​​.

The evidence to support a reduction in wasteful diagnostic and therapeutic resources is clear and uncontroversial. The Canadian Institute for Health Information estimates that 30 per cent of health care, or nearly 1 million tests and treatments annually, is unnecessary. This is a staggering figure, and especially worrisome given Canada’s growing health-care expenditure, which totaled $228 billion dollars — or 11 per cent of its gross domestic product — in 2016. A national effort to curb unnecessary testing and treatment not only makes medical sense, but is also economically prudent in the context of ballooning health care utilization.

Choosing Wisely hopes to achieve its goals through grassroots advocacy by publishing a series of practice recommendations for physicians based on peer-reviewed research. These recommendations, organized by specific specialties, are often based on meta-analyses of research already conducted in different areas of clinical medicine. Interestingly, many of the studies used to ultimately guide these recommendations did not collect data or outcomes on minority populations. In studies that did, most of the patientsanalyzed were Caucasian. It begs the question, is Canadian health care choosing wisely or merely choosing whitely?

Inexplicably, research data on minority and female populations is not collected in Canada — seemingly a theme in this country.

This is why it matters. The medical community has long ignored minority, female and low socioeconomic communities in its research initiatives. In order to combat this trend, the National Institutes of Health (NIH) passed the Revitalization Act in 1993 that mandated the appropriate inclusion of women and minorities as subjects in clinical research. Inexplicably, research data on minority and female populations is not collected in Canada — seemingly a theme in this country. Despite the lofty goals of the NIH, however, the research community has fallen well short of its intended demographic targets.

Clinically, this has significant implications. Studies have shown that a patient’s race and gender play a large role in disease screening, diagnosis and management. For example, the Framingham Risk Score, which is considered the gold standard algorithm to predict a patient’s 10-year risk of having a cardiovascular event, was primarily validated in the Caucasian population. Unfortunately, clinicians still rely on this tool and often apply it to minority populations despite it not accurately estimating their risk.

Similarly, research has shown that African American women suffer higher mortality ratesfrom breast cancer relative to Caucasian American women. It has been hypothesized that they may be at higher risk from early onset disease, which may put them at a disadvantage when considering current screening guidelines. These illustrations demonstrate that our medical research infrastructure has focused on promoting the health of patients who are most often male, Caucasian and well-heeled.

These research biases are hard to shake because research is notoriously hard to conduct. It first involves identifying a clinical question, generating an hypothesis, developing an experimental protocol and securing funding. Subsequently, researchers need to navigate the important but Byzantine institutional review processes before addressing the challenges associated with subject recruitment, data collection and analysis. Ideal research patients are those who have the luxury of time and who are able to travel to downtown research hospitals for repeated evaluation. It is easy to see how this is unlikely to include a minority single mother working multiple jobs in Scarborough.

Our society will migrate away from a one-size-fits-all health-care paradigm.

Canada’s Minister of Science, Kirsty Duncan, has recently called science sexist, but sadly stopped short of also calling it racist. She, did however, recently introduce the Equity, Diversity and Inclusion Action Plan in order to address the chronic under-representation of women, First Nations, visible minorities and persons with disabilities among Canada Research Chairs. This laudable effort should also dovetail with the minister’s insistence — along with support from the newly installed chief science advisor — that taxpayer-funded medical research focus on all communities represented in our country and not just select groups. She could make significant strides in this area by following the NIH’s lead with a Canadian version of the Revitalization Act.

In an era that will be increasingly dominated by big data genomics, artificial intelligenceand personalized medicine, our society will migrate away from a one-size-fits-all health-care paradigm. Choosing Wisely will continue being an essential and vital initiative in helping to reduce unnecessary tests and streamline medical care in this country. Future iterations of its recommendations, along with any practice guidelines created, should endeavour to more comprehensively apply to and represent the great diversity of Canada.

Source: The Studies Behind Canadian Health Care Seem To Have Forgotten Us

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