Health Minister orders review of pandemic warning system, concerns raised by scientists

Really hope the review will be truly independent, review all appropriate documentation, analysis and memos and identify what level and persons were responsible for the decision (i.e., was the decision made at the bureaucratic or political level):

Canada’s Health Minister has ordered an independent review of the country’s pandemic early warning system, after The Globe and Mail reported that the respected surveillance and research unit was silenced last year, several months before the COVID-19 outbreak hit.

Health Minister Patty Hajdu said the federal review will probe the shutdown of the system, as well as allegations from scientists inside the Public Health Agency of Canada that their voices were marginalized within the department, preventing key messages from making it up the chain of command.

“My hope is that we can get the review off the ground as soon as possible,” Ms. Hajdu said in an interview. “The independence of this review is critically important.”

A Globe investigation in late July detailed how the unit, known as the Global Public Health Intelligence Network, or GPHIN, was effectively silenced in May, 2019. The team of analysts – including doctors and epidemiologists specially trained to scour the world for health threats – were reassigned to other tasks within the government amid shifting department priorities.

Though GPHIN had garnered a stellar reputation internationally, and was dubbed a “cornerstone” of global pandemic preparedness by the World Health Organization, officials within Public Health decided in late 2018 and early 2019 that the operation was too internationally focused and could be put to better use working on domestic projects. The new work did not involve pandemic preparedness.

Those changes led to the shutdown of a special surveillance and alert system that helped Canada and the WHO gather intelligence on potentially threatening outbreaks, particularly in situations where foreign governments were trying to hide or play down the event.

Current and former scientists and doctors at Public Health also said they began to fear that their messages were not being heard, or understood, by layers of department officials who lacked a sufficient background in science. That made it difficult to convey urgent and complex information up the chain of command.

Responding to those concerns, Ms. Hajdu said her office has spent the past month looking into the problems at the departmental level, which led her to order the review.

“I’m concerned when there is an accusation that scientists are not being fully empowered, or in some way feel their voices are being blunted or muted,” Ms. Hajdu said in an interview.

“I can listen to those kinds of worries and do the kinds of things that I’m prepared to do, which is to order a review of the program and to determine whether or not the changes are actually resulting in the kind of information that Canada needs.”

Ms. Hajdu said she has asked that the review be done expeditiously, so that fixes can be identified and the recommendations implemented as soon as possible. She said that could mean having the recommendations back in six months.

“We’re working on [appointing] some professionals that would have the experience and the expertise to be able to do this review thoroughly, but also expeditiously … I don’t want this to be a two-year review,” the Health Minister said. The people leading the review are expected to be named in the coming weeks and will be independent of Public Health Canada.

Created as an experiment in the 1990s, GPHIN became a key part of Canada’s pandemic preparedness capacity after the deadly 2003 SARS outbreak, and was seen as a way to collect intelligence on global outbreaks. The point was not merely to identify the threat early, but also to monitor crucial developments and clues about the spread, often before official announcements were made by foreign governments, to speed up government decision-making.

With a team of roughly a dozen highly specialized analysts working in multiple languages, GPHIN was globally renowned for its ability to collect and disseminate credible information. It scoured more than 7,000 data points a day, including medical data, news reports, scraps of information on social media, and details on internet blogs to gather intelligence on outbreaks.

GPHIN had been credited with detecting some of the most important signals from the 2009 H1N1 outbreak in Mexico, outbreaks of Zika in West Africa, and a potentially catastrophic 2005 bird flu outbreak that the Iranian government tried to hide. As recently as two years ago, the WHO credited the Canadian unit for supplying 20 per cent of its “epidemiological intelligence.”

However, department changes effectively shuttered the operation, and limited the power of scientists inside the agency. The Globe obtained 10 years of internal GPHIN records which showed the system, which had issued more than 1,500 intelligence alerts about potential health threats over that time, went silent on May 24 last year. That coincided with a department edict that all such alerts had to be approved by senior managers inside Public Health. GPHIN analysts were shifted to domestic projects, such as tracking the effects of vaping in Canada, which effectively curtailed Canada’s surveillance of international health threats.

Past and present employees told The Globe that the system was designed to provide information to speed up Canada’s response to a dangerous outbreak such as COVID-19, including measures such as shutting down the border, quarantining travellers, enforcing physical distancing, and locking down long-term care homes.

“A lot of the work that we’ve done [over the past month] is to try to dig a little bit deeper into how this is working and why were these changes made,” Ms. Hajdu said.

GPHIN “has the potential to be a very valuable asset for Canada. It can’t be wasted,” the Health Minister said.

“The intent when there is an emerging pathogen is to close it off, to try and contain it as best as possible – at its source. So that you don’t end up in a pandemic like this again.”

The independent review follows a pair of other developments in recent weeks. Last month, the Auditor-General of Canada launched an investigation into the shutdown of the pandemic surveillance unit. And Public Health officials have restarted the GPHIN alert system.

COVID-19 has been a reckoning for governments around the world, exposing weaknesses in pandemic readiness and responsiveness. Ms. Hajdu said countries must now take stock of what needs to be done to implement stronger measures, including early warning and surveillance capacity, that will remain effective and not be eroded over time, when the memories of the crisis fade.

The federal review will look at “governance and what works best” for GPHIN, Ms. Hajdu said, adding that the messages raised by scientists inside Public Health, who took risks by speaking out publicly, resonated with her.

“In [The Globe’s] reporting, the plea from the scientists and the researchers that work in that team were particularly profound,” Ms. Hajdu said.

“There is still enough there to save, and to boost, and I think this independent review is going to be very helpful,” she said. “Obviously there is a lot of work to do.”

Source: Health Minister orders review of pandemic warning system, concerns raised by scientists

Ottawa must put data first and tie to health funding

Agree in principle but politically hard to achieve (Quebec doesn’t even automatically share its data with CIHI):

The federal government looks yet again about to transfer billions of dollars to the provinces with essentially no strings attached.

We’ve seen this before with $40 billion in the 2004 First Ministers’ Health Accord and then $11 billion in the 2017 Health Accord, both highlighting home care, without evidence of significant progress.

And the prime minister just announced $19 billion for the Safe Restart Program, though without any details, especially as to what the federal government receives in return.

One major quid pro quo could address Canada’s profound lack of high-quality data, especially highlighted by the COVID-19 pandemic. While U.S. analysts are able in near real time to estimate and project COVID cases, hospitalizations and deaths down to the county level, Canada is barely able to produce comparable data by province.

Some of this $19 billion is meant for COVID testing and tracing, and improvements in long-term care.

A major failing in the tragic and disproportionate COVID-19 mortality rates in nursing homes was due to poor staffing levels, an issue that has been known for decades and pointed out in myriad reports and studies. But there are essentially no comparable and complete national data in this area.

As strongly recommended in the recent Royal Society of Canada report, high quality data on current staffing levels, connected at the individual level to health outcomes, are essential, especially for the federal government to develop the evidence-based national standards for long-term care so many have been calling for.

The provinces have typically argued that health care is a provincial jurisdiction, so the federal government cannot compel them to provide sorely needed data. However, in another example, we have had almost two decades of cajoling the provinces with federally funded Canada Health Infoway paying at least half the cost to develop and implement standardized and interoperable software systems for electronic health records.

Most relevant for the current pandemic, Infoway was specifically tasked with producing a system for anticipating and dealing with infectious disease outbreaks. This system, had it been working even 15 years after its initial funding in 2004, would have enabled a very different outcome this year, likely with far fewer cases and deaths from COVID-19.

Paper agreements and cajoling the provinces with optional subsidies have clearly failed. It’s time for a much tougher stance.

The federal government has the necessary constitutional powers, including explicit jurisdiction for statistics, criminal law, spending powers, and the general peace, order and good government (POGG) power, to compel the collection and flows of 21st century kinds of data.

Monique Bégin, as federal minister of health, successfully ended the practice of physicians’ extra-billing by amending the Canada Health Act to deduct any extra billing from an offending province’s fiscal transfer. The Supreme Court has just upheld the federal government’s genetic privacy legislation as constitutional despite objections from Quebec.

In the current pandemic emergency, high-quality, standardized, real-time data on “excess deaths,” COVID cases and hospitalizations, and details on the operations of the thousands of nursing homes and retirement residences across Canada are essential.

For nursing homes, we need these data to learn why some were completely successful in avoiding any novel coronavirus cases amongst residents and staff, while others suffered tragically. In turn, such statistical information will provide the federal government the strong evidence base needed to take the lead in establishing national standards for nursing home staffing levels, though action on staffing must not wait for perfect data.

And once we have standardized individual-level data on COVID cases, including factors like age, sex, neighbourhood, other diseases, individuals’ household composition, race, hospitalization rates, disease severity, and deaths, as the U.K. has been able to do for 17 million of its residents in near real time, then Canada will be able to support far more sophisticated analysis and projections to deal with the current top pandemic issues — not least, whether to open bars or schools.

To Be Useful, Health Data Must Go Deeper Than ‘Black’ and ‘White’

Apart from the somewhat polemic introduction, a good discussion of the limits of aggregated visible minority groups and the need for more desegregated data by country of ethnic ancestry (rather than nationality, given need to include second and subsequent generations).

However, starting with the basic visible minority data, which could then be matched with census socio-economic data, is a needed start to further needed disaggregation:

All over the world, the COVID-19 pandemic has disproportionately affected patients based on a variety of identifiable factors, from age to sex to occupation. Data such as these are crucial to public-health officials and researchers tasked with improving care for all citizens. But in some cases, the quest for data seems driven as much by political factors as by the need to protect public health.

In Canada, where I work as a resident physician in the field of head and neck surgery, the federal government has proposed that racial data be tracked as part of our national response to the COVID-19 pandemic, as is already the case in the United States. On the surface, there would seem to be an obvious parallel with the need to collect race-based policing data, especially in the wake of George Floyd’s death and the worldwide protests that followed.

Collecting such data makes sense in the context of policing, since race corresponds to a visible marker that can prompt radically different responses from police officers. But the situation is different when it comes to public health. And using race as a proxy for socioeconomic and environmental explanations of disease—by broadly categorizing patients as White, Black, Asian, Indigenous, and so on, according to melanin-influenced phenotype—is a dangerous leap. Obtaining more detailed data, including nationality-based information, would be a more fruitful endeavor.

Consider the use of broad racial typologies in the field of education. York University professors Carl James and Tana Turner combed through Toronto District School Board data to go beyond the officially recognized categories of “Black” and “White.” In so doing, they discovered that recent immigrants from Africa and the Caribbean tend to perform better than those with generational ties to Canada. This disparity is not evident within the aggregated statistics, wherein both of these groups are simply classified as Black. In a country with a rich recent history of immigration, such as Canada, finer distinctions are particularly important.

Similar examples arise when it comes to race-based health data. Sickle cell anemia, a blood disease with a challenging clinical trajectory, is most commonly found in sub-Saharan Africa, whose population undeniably may be placed within the “Black” designation. But examining sub-populations within this category yields surprising trends. Sickle cell anemia is about 100 times more common in Nigeria than in Somalia. Making matters more confusing, the prevalence of the disease is higher in Greece, whose majority population we may safely place in the “White” category, than in either Somalia or Jamaica. Terms such as “Black” and “White” simply become useless when talking about many areas of health-related statistics.

In some rare instances, there may be a direct causal association between skin melanin content and disease. Skin cancers fall into this category. Here, we may confidently assert that racial characteristics are relevant to the biological explanation for the disease. Medicine has long recognized this, and has adapted to it—including through the so-called Fitzpatrick scale as a tool to help evaluate risk based on skin tone.

In the case of COVID-19, we know that diabetes, hypertension, and obesity all are significant comorbidities. Does skin melanin content have an effect on incidence rates and mortality? We can’t confidently come to a conclusion one way or another. But any clinician will tell you that such a link is improbable. Yes, there are outcome disparities that align with race. But such disparities among racialized Canadian communities seem largely related to unequal access to care, and to socioeconomic factors related to a historical narrative of inequality. Those inequalities should be addressed regardless of whether they manifest themselves in COVID-19 data.

Broad categorizations fall apart when it comes to Indigenous groups as well. It is no secret that Indigenous Canadians face unacceptable health disparities when compared to non-Indigenous Canadians. By many accounts, the state of Indigenous health in Canada is a shameful stain on an otherwise successful universal healthcare enterprise. But just as with Somali-Canadians and Greek-Canadians, each Indigenous community faces unique challenges related to their disease burden. While arthritis and rheumatism are more common amongst Indigenous groups as a whole, the prevalence of these conditions is significantly higher for First Nations as compared to Inuit communities in the northern part of the country. Surely this is important when determining priorities in a cash-strapped healthcare delivery environment.

Similarly, a sub-group analysis reveals that northern Inuit communities in Nunavut and the Northwest Territories face significantly greater challenges related to access to care as compared to First Nations people in the provinces, who are more likely to live closer to large hospitals and specialist medical clinics. These disparities are a matter of geography, amongst other things. Yet important patterns are masked if the data is simply grouped under broad categories such as “Indigenous” and “Non-Indigenous.”

These examples underscore the need for granularity in data collection. More detailed information encompassing nationality and background, in combination with other important socio-economic factors, allow for a more complete picture of the health problems that must be addressed. There are numerous health-outcome disparities between “Black” and “White” Canadians that many politicians and policy makers, with good intentions, seek to cast as evidence of systemic racism. Putting aside how that term should be defined, such an approach would apply a misguided oversimplification to the practice of medical data collection.

The goal should be to help all Canadians—especially those who truly need it. Statements such as “Canadian females of Filipino descent have higher incidence rates of thyroid cancer when compared to the general population” are much more useful than “Asian-Canadian females have higher rates of thyroid cancer.” That is why Public Health Ontario and organizations such as the ICES research institute already use large data sets to fine-tune clinical practices and improve the livelihood of all citizens.

Thanks to advances in machine learning, we have the tools to collect, store, and analyze data on an even larger scale. But our efforts will be successful only if we apply a typology that is based on categories useful to doctors and patients, not politicians and activists.

Source: To Be Useful, Health Data Must Go Deeper Than ‘Black’ and ‘White’

Race Is Used in Many Medical Decision-Making Tools

Good example of systemic but unintentional racism:

Unbeknown to most patients, their race is incorporated into numerous medical decision-making tools and formulas that doctors consult to decide treatment for a range of conditions and services, including heart disease, cancer and maternity care, according to a new paper published Wednesday in the New England Journal of Medicine.

The unintended result, the paper concludes, has been to direct medical resources away from black patients and to deny some black patients treatment options available to white patients.

The tools are often digital calculators on websites of medical organizations or — in the case of assessing kidney function — actually built into the tools commercial labs use to calculate normal values of blood tests. They assess risk and potential outcomes based on formulas derived from population studies and modeling that looked for variables associated with different outcomes.

“These tests are woven into the fabric of medicine,” said Dr. David Jones, the paper’s senior author, a Harvard historian who also teaches ethics to medical students.

“Despite mounting evidence that race is not a reliable proxy for genetic difference, the belief that it is has become embedded, sometimes insidiously, within medical practice,” he wrote.

The paper is being published at a tense moment in American society as black communities, disproportionately affected by the coronavirus, protest unequal treatment in other areas of their lives.

Dr. Jones said he believed the developers of the tools, who often are academic researchers, are motivated by empiricism, not racism. But the results, his analysis found, have often led to black patients being steered away from treatments or procedures that white patients received.

The paper included a chart listing nine areas of medicine where there are race-based tests, and it analyzed the consequences. For example, it reported, labs routinely use a kidney function calculator that adjusts filtration rates for black patients. With the adjustment, black patients end up with slightly better rates than whites, which can be enough to make those with borderline rates ineligible to be on a kidney transplant list.

An online osteoporosis risk calculator endorsed by the National Osteoporosis Foundation, among others, calculates chances of a fracture differently for black and white women. Black women end up having a score that makes them less likely to be prescribed osteoporosis medication than white women who are similar in other respects.

The Impact of Disparities on Children’s Health

Significant:

You might not have noticed it (there’s a lot going on) but there was some good news last week in a study in JAMA that suggested that racial disparities in extremely premature infants were shrinking. The study looked at more than 20,000 extremely preterm infants (22 to 27 weeks gestation) born from 2002 to 2016. Mortality rates dropped over the course of the study, and though serious infections were more frequent in black and Hispanic infants early on, the rates converged with those of white infants as time went on.

This is striking because the racial disparities around maternal mortality, premature birth and infant mortality have been so persistent. Black women and American Indian and Alaskan Native women are two to three times more likely than white women to die of pregnancy-related causes — about a third of these deaths take place during pregnancy, a third are specifically related to delivery, and a third happen in the year after delivery, but from causes related to pregnancy.

This came up last week, when I wrote about late preterm infants, and Dr. Wanda Barfield, the director of the division of reproductive health at the Centers for Disease Control and Prevention, pointed to rising rates of premature birth, which disproportionately affect black and Hispanic women.

These stark disparities at the very beginning of life have received a fair amount of public health attention, as have the racial and ethnic disparities in infant mortality: In the United States in 2017, 5.8 of every 1,000 infants born alive died before reaching their first birthday. Black infants died at more than twice the rate of white infants (11.9 versus 4.9 per 1,000). And this in turn is tied closely to those issues of maternal health and length of gestation; two of the leading causes of deaths before the first birthday are prematurity and the complications of pregnancy.

Often the public discussion of health disparities then jumps to adult health, where we track inequities in chronic diseases, in heart disease, cancer, diabetes and, of course, in life expectancy.

But the disparities in how children grow, how they get sick and how they get taken care of may all play into those chronic diseases, and are essential to understand.

“We focus on these chronic diseases of older age as results of racism, continuing discrimination,” said Dr. Nia Heard-Garris, a pediatrician and researcher at Lurie Children’s Hospital in Chicago, and the chair of the American Academy of Pediatrics Section on Minority Health, Equity and Inclusion.

“We do see the impact of racism on health in childhood, though it’s harder to see physical health changes immediately.”

Eating habits and behavioral patterns, which contribute to the health disparities in adults, have roots in childhood, Dr. Heard-Garris said, as does distrust of the health care system that can lead to gaps in care.

Trudeau, Ontario health minister say they’re looking at collecting race-based pandemic data

Long overdue. But this needs to be national in scope, with consistent definitions and practices across all provinces and publicly available through CIHI (Quebec will predictably not play along, unfortunately):

The federal and Ontario governments say they’re now working toward collecting race-based health data as part of their response to the COVID-19 pandemic.

Human rights commissions from across Canada have added their voices to those of municipalities, health advocates and elected officials calling for the collection of raced-based COVID-19 data to ensure that vulnerable groups are protected.

“Colour-blind approaches to health only serve to worsen health outcomes for black, Indigenous and racialized people because we can’t address what we can’t see,” said B.C.’s Human Rights Commissioner Kasari Govender.

Federal, provincial and territorial human rights commissions say that collecting pandemic data without breakdowns by race leaves public health officials with no window into COVID-19’s impact on vulnerable populations.Earlier today, both the federal and Ontario governments said that while they typically do not collect race-based health data, they are working on plans to start doing so now.

Prime Minister Justin Trudeau says the government has invested millions of dollars towards improving the collection of race-based data. 2:17

“We recognize that there have long been challenges in Canada about collecting disaggregated data … which is why a number of years ago, we invested millions of dollars towards Statistics Canada to start improving our ability to collect race-based data,” Prime Minister Justin Trudeau said Friday in Ottawa.

“We’ve flowed greater funding to community organizations and grassroots organizations that are helping out people who we already know to be more vulnerable and marginalized … But yes, we need to do a much better job around disaggregated data and that’s something that we’re going to do.”

Ontario Health Minister Christine Elliott said that local health agencies in the province can collect race-based data legally now, should they choose to do so, providing they respect privacy and confidentiality.

‘We haven’t traditionally collected race-based data in health but there are a number of organizations that have come to us to ask us to do that,” Elliott said.’We are working with the anti-racism directorate to set up a broader framework in order to collect that in a meaningful way. It is something that we are working on as an active project.”

Ontario Health Minister Christine Elliott says that while her province has not traditionally collected race-based health data, it is working on a plan to start. 0:41

Canada does not collect race-based pandemic data. Both the United States and the United Kingdom have started doing so.

Earlier this week, Toronto City Council called on provincial health authorities to begin collecting province-wide data on COVID-19 cases, broken down by race, occupation and other “socioeconomic factors.”

“The old adage of ‘what gets measured gets done’ is especially relevant right now. In order to tackle COVID-19, we must fully understand it and who is most at risk,” Toronto City Coun. Joe Cressy said in a media statement.

“Toronto’s data has shown that while we’re all susceptible to the virus, parts of the city are more impacted than others. In order to protect our residents and beat COVID-19, we need the Ontario Government to collect and share disaggregated data.”

Basic data not collected: Trudeau

One of Canada’s leading experts on the social causes of disease told CBC Radio’s The House last week that Canada’s failure to collect race-based data on COVID-19 infections amounts to discrimination by “neglect.”

“Discrimination is not necessarily about what you do. It’s often about what you don’t do,” said Dr. Kwame McKenzie, a psychiatry professor at the University of Toronto and CEO of the Wellesley Institute, a think tank that studies urban health issues.

“It’s not about people being actively discriminatory or racist. It’s sometimes about just neglect,” he said. “And the fact that we haven’t collected this data seems neglectful, because everybody really knew we should be collecting these data but it was never at the top of anybody’s list of things to do.”

Liberal MPP Mitzie Hunter, who represents the provincial riding of Scarborough-Guildwood, said the lack of information about who is getting the virus now, and who is most in danger of getting sick, puts people in her community at greater risk.

“One of the weaknesses in the Ontario Public Health Response is the lack of the collection of disaggregated data based on race and other demographic profiles that could help track the progress of this virus by individuals, where they work, where they live and income levels,” she told The House last week.

“All of those factors … could help to save lives.”NDP Leader Jagmeet Singh also has called for the collection of race-based data to improve health outcomes for vulnerable groups.

“We need to make sure we have the data, that there is race-based data that allows us to make the evidence-based decision making to remedy these injustices,” Singh told the House of Commons earlier this week.

On Friday, Trudeau admitted that during the early days of the COVID-19 outbreak, public health officials were not always collecting basic demographic information, such as age and gender.

“We know we need to do much better to properly understand where things are hitting hardest in this COVID-19 crisis,” he said.

Source: Trudeau, Ontario health minister say they’re looking at collecting race-based pandemic data

Health agency reveals race-based data guideline as calls grow for nation-wide collection

Yes!

Will take some time given the coordination required to ensure consistent data across provinces, with Quebec unlikely to play ball unfortunately (CIHI data does not automatically include Quebec data. When I asked the Ministère de la Santé et des Services sociaux for the comparable birth tourism (non-resident) birth statistics, I was met by bureaucratic obfuscation and had to go to major hospitals directly):

In response to calls for better demographic data to understand health inequities and COVID-19, this week the Canadian Institute for Health Information is releasing an interim race data standard that public health agencies can use.

Many advocates, though, are pushing for more than advice, saying the federal government has a leadership role to play to ensure there’s consistent data, regardless of jurisdiction. That gap in information affects the provincial, territorial, and federal response to the pandemic and until the country moves forward with race-based and disaggregated income data, Canada “can’t possibly target resources” and care where they’re most needed, said Dr. Jennifer Rayner, an epidemiologist and director of research at the Alliance for Healthier Communities.

“It’s ignorance and blindness to where there’s gross inequities. Until we know where the discrepancies and inequities in health are, we can never tackle them,” she said, saying communities need action and the work needs to start somewhere. “I hate to keep waiting until we get it all perfect.”

The alliance is part of a national working table headed by Canadian Institute for Health Information (CIHI)—which the institute notes are not formal—that’s considering two things: what data to collect, and how to train health professionals so they’re comfortable asking these questions. While this work has been going on for years, the report on the interim standard noted a “heightened awareness and interest” in collecting such data to better understand COVID-19’s spread.

The lack of data on race in Canada makes it difficult to monitor racial health inequalities and CIHI’s interim standard was created in an effort to “harmonize and facilitate collection of high-quality data,” according to a copy shared with The Hill Times of the standard, “Race-Based Data Collection and Health Reporting,” to be released later this week.

It proposed two questions asking patients to identify their race categories (also giving the option of “prefer not to answer”) and whether they identify as First Nations, Inuit, or Métis.

Though the Public Health Agency of Canada (PHAC) has said it is looking into the possibility of collecting more demographic data related to COVID, most said it’s a matter of political will, under the direction of Health Minister Patty Hajdu (Thunder Bay-Superior North, Ont.) and Indigenous Services Minister Marc Miller (Ville-Marie–Le Sud-Ouest–Île-des-Soeurs, Que.).

When asked, neither of the ministers’ offices, the PHAC, or CIHI offered a position on whether such data should be collected nation wide.

However, Ms. Hajdu’s spokesperson, Cole Davidson, said in an email that “[d]emographic data collection and data sharing between the federal and provincial/territorial governments is crucial to advancing our knowledge of COVID-19 and understanding potential inequalities in our health care system. We’re working with provinces and territories to ensure we’re collecting the data we need to better understand this pandemic.”

And while these conversations are happening, advocates say it’s not leading to the outcome that is becoming more urgent by the day—a commitment and timeframe for nationwide data collection.

“As a national strategy, if you don’t value gathering the data it’s hard to motivate other places to do so,” said Aimée-Angélique Bouka, the College of Family Physicians of Canada vice-chair-elect for residents. “You’ll see disparity across the board if you don’t see proper federal leadership in the project.”

‘It’s all about political will’

Canada has a blind spot regarding its treatment of racialized groups and immigrants, despite the evidence, she said.

COVID-19 was thought to be “the grand equalizer,” but some populations have proved more vulnerable. In the United States, by mid-April nearly one-third of those who died were African American, an Associated Press report revealed, though Black people represent about 14 per cent of the population where they reported. Such disparities exist in Canada, though Dr. Bouka said society is uncomfortable with painful questions that reveal a pattern of neglect.

“COVID is only a snapshot and a clear representation of what happens in our country in a systematic way.”

She said she would add a question about immigrant status, and how long a person has been in Canada as other important markers that influence health, said Dr. Bouka, who wrote about that blind spot for Policy Optionsthis month.

Because we don’t have this self awareness we are slow to accept it, but once the outbreaks became evident, demographics became impossible to ignore, she said.

For more than two decades, Independent Senator Wanda Thomas Bernard has been calling for race-based data collection.

“It’s so frustrating and infuriating,” said Sen. Bernard (East Preston, N.S.), a former social worker and researcher who co-authored a 2010 book, Race and Well-Being, which she said demonstrated racism is an everyday experience for Black Canadians and has an impact on all forms of their health.

“I can’t help but ask myself, ‘How many more casualties do we have to see before there’s a true appreciation for why the collection of this data across all provinces and territories [is] essential?’”

Sen. Bernard said she has been asking these questions of Liberal ministers and their aides—she’s not comfortable divulging the details of these conversations—and while she remains hopeful, she said it’s “all the more urgent to make the decision now.”

“We need to be on the same page with this, and let’s cut through the politics,” she said, and look at COVID-19 as a starting point, an “awakening” for the inequities in health that long predated the pandemic.

Unfortunately, it takes more than proof to shift policy, said Dr. Bouka and it becomes about building more evidence and raising enough voices to make inaction impossible.

“It’s mostly us being reminded so politicians can’t ignore it. Ultimately, it’s all about political will. If your weaknesses are shown repeatedly, then you can’t just pretend that you didn’t know,” she said.

Though it’s left up to the individual jurisdictions, Sen. Bernard said it’s important to have data that’s consistent across the country, which requires leadership so that it is collected in the same way.

Alex Maheux, CIHI spokesman said by email it’s up to the provinces and territories to decide how to proceed, but it has expressed willingness to support jurisdictions in that data collection and is currently working with partners to understand race and ethnicity data needs.

Earlier this month, Manitoba became the first province to track the ethnicity of COVID-19 patients while Quebec and Ontario have said they will as well. At a local level, Toronto has also said it tracks demographics.

In mid-July, CIHI said it will also publish a broader discussion document, followed by ongoing engagement with relevant stakeholders to “refine” the standard, if needed.

Public Health Agency of Canada spokesperson Maryse Durette said by email the government is committed to working with the provinces and territories—as well as other partners—to improve data completeness and access, including demographic information.

“These indicators will help to further our understanding of COVID-19 among different population subgroups and to monitor trends going forward,” she said, and it plays “a critical role” in helping to understand disease severity and risk factors, to monitor trends over time, and to ensure that public health measures can be effectively designed and delivered where needed.”

Data collection on Indigenous people ‘distinct’

CIHI’s standard notes that though Indigenous groups are often considered alongside racial and ethnic categories, First Nations, Inuit, and Métis have “inherent and collective rights to self-determination,” including ownership and governance of their data. That warrants “distinct consideration” and must include engagement with Indigenous communities and data governance agreements.

Canada tracks on-reserve cases of the coronavirus, but with nearly half of First Nations living off-reserve, the picture is incomplete. Yellowhead Institute independently researched, and on May 12 published findings revealing more than triple the cases reported by Indigenous Services Canada. Mr. Miller has acknowledged the department’s data is insufficientand on May 9 announced $250,000 towards improving data collection—not enough, according to Yellowhead researcher Courtney Skye.

“If we’re going to recognize First Nations, Indigenous, and Inuit are more impacted and more at risk for poor outcomes because of COVID-19, there needs to be a multi-jurisdictional prioritization of getting proper information available to communities to make informed decisions,” she said.

“Communities have a right to that information and the federal government has a fiduciary responsibility to make sure this work is adequately funded.”

Rose LeMay, CEO of the Indigenous Reconciliation Group and regular Hill Timescolumnist, penned a plea in April for COVID-19 data that notes background and Indigeneity. A month later, she said she remains baffled there’s been limited movement to close the data gap.

“This is a once-in-a-lifetime data dump, if we were to access it, because this shows the inequities of the system”, she said, noting Canada has “substantial work” to build trust given its problematic history collecting information on Indigenous people, and declaring who is and isn’t status.

That could be addressed by involving organizations perceived as objective to lead the way alongside Indigenous groups, and would likely require building new partnerships to do it well.

The lack of trust shouldn’t stop this work from happening, she said, adding the “how” is a “purely technical exercise” that she said she thinks Canada’s health-care system is capable of managing.

Ms. Skye said the patchwork approach isn’t working and it needs to be led by Indigenous people and be properly resourced. She added that this is another indication that the Liberal government’s approach to reconciliation is more for “show” than addressing “tangible barriers,” like health, that impact the daily lives of Indigenous people.

“These realities are known, are well-documented, and have existed for a long time, and there hasn’t been enough of the practical work done on behalf of the federal government and provinces,” she said. “It does come down to the will of the government.”

Source: Health agency reveals race-based data guideline as calls grow for nation-wide collection 

Who’s Hit Hardest By COVID-19? Why Obesity, Stress And Race All Matter

More on disparities in health outcomes:

As data emerges on the spectrum of symptoms caused by COVID-19, it’s clear that people with chronic health conditions are being hit harder.

While many people experience mild illness, 89% of people with COVID-19 who were sick enough to be hospitalized had at least one chronic condition. About half had high blood pressure and obesity, according to data from the Centers for Disease Control and Prevention. And about a third had diabetes and a third had cardiovascular disease. So, what explains this?

“Obesity is a marker for a number of other problems,” explains Dr. Aaron Carroll, a public health researcher at the Indiana University School of Medicine. It’s increasingly common for those who develop obesity to develop diabetes and other conditions, as well. So, one reason COVID-19 is taking its toll on people who have obesity is that their overall health is often compromised.

But does obesity specifically affect the immune system? Perhaps.

Prior research has shown that people with obesity are less protected by the flu vaccine. They tend to get sicker from the respiratory disease even if they’ve been immunized. In fact, researchers have found that as people gain excess weight, their metabolism changes and this shift can make the immune system less effective at fighting off viruses.

“What we see with obesity is that these [immune] cells don’t function as well,’ says Melinda Beck, a health researcher at University of North Carolina, Chapel Hill. Basically, she explains, obesity throws off the fuel sources that immune cells need to function. “The [immune cells] are not using the right kinds of fuels,” Beck says. And, as a result, the condition of obesity seems to “impair that critical immune response [needed] to deal with either the virus infection or [the ability] to make a robust response to a vaccine.”

So this is one explanation as to why people with obesity seem more vulnerable to serious infection. But, there are many more questions about why some people are hit harder, including whether race is a factor.

The CDC found that 33% of people who’ve been hospitalized with COVID-19 are African American, yet only 13% of the U.S. population is African American. Some local communities have found a similar pattern in their data. Among the many (26) states reporting racial data on COVID-19, blacks account for 34% of COVID deaths, according to research from Johns Hopkins University.

This disproportionate toll can be partially explained by the fact that there’s a higher prevalence of obesity, high blood pressure and diabetes among African Americans compared with whites.

And as Dr. Anthony Fauci of the National Institutes of Health said last week at a White House coronavirus task force briefing, this crisis “is shining a bright light on how unacceptable that is, because yet again, when you have a situation like the coronavirus, [African Americans] are suffering disproportionately.”

There are several factors, including some genetic ones, that may make African Americans more vulnerable to COVID-19. There have been a few studies that have pointed to African Americans potentially having genetic risk factors that make them more salt-sensitive,” says Renã Robinson, a professor of chemistry who researches chronic disease at Vanderbilt University. This may increase the likelihood of high blood pressure, which, in turn, is linked to more serious forms of COVID-19. “It could be a contributing factor,” she says, but there are likely multiple causes at play.

Another issue to consider, she says, may be high stress levels. She says when a person experiences racial discrimination, it can contribute to chronic stress. She points to several studies that link discrimination and stress to higher levels of inflammationamong black adults. “And chronic stress can make one more vulnerable to infection because it can lower your body’s ability to fight off an infection,” she says.

Chronic stress is linked to poverty — so this could be a risk factor for low-income communities. In fact, research has shown that people who report higher levels of stress are more likely to catch a cold, when exposed to a virus, compared with people who are not stressed.

According to a new survey from Pew Research Center, health concerns about COVID-19 are much higher among Hispanics and blacks in the U.S. While 18% of white adults say they’re “very concerned” that they will get COVID-19 and require hospitalization, 43% of Hispanic respondents and 31% of black adults say they’re “very concerned” about that happening.

And other aspects of structural racism could contribute to the elevated risk for black Americans.

“Every major crisis or catastrophe hits the most vulnerable communities the hardest,” say Marc Morial, president and CEO of the National Urban League. And he points to several factors that help to explain the racial divide.

“Black workers are more likely to hold the kinds of jobs that cannot be done from home,” Morial says. So, they may be more likely to be exposed to the virus, if they are working in places where it’s difficult to maintain social distancing. In addition, he points to longstanding inequities in access to quality care.

“There also is bias among health care workers, institutions and systems that results in black patients … receiving fewer medical procedures and poorer-quality medical care than white individuals,” he says. He says an expansion of Medicaid into those states that still haven’t expanded would be one effective policy to address these inequities.

The characteristics of the communities where people live could affect risk, too especially for those who live in low-income neighborhoods. The roots of chronic illness stem from the way people live and the choices that may or may not be available to them. People who develop the chronic illnesses that put them at higher risk of COVID-19 often lack access to affordable and healthy foods or live in neighborhoods where it’s not safe to play or exercise outside.

“Let’s take a patient with diabetes for example. They are already at high risk for COVID-19 by having a chronic condition,” says Joseph Valenti, a physician in Denton, Texas, who promotes awareness of the social determinants of health through his work with the Physicians Foundation.

“If they also live in a food desert, they have to put themselves in greater risk if they want access to healthy food. They may need to take a bus, with people that have COVID-19 but aren’t showing symptoms, to get access to nutritious food or even their insulin prescription,” he says.

Poor nutrition, and the obesity linked to it, is a leading cause of premature death around the globe. And, this pandemic brings into focus the vulnerability of the millions of people living with lifestyle-related, chronic disease.

“We’re seeing the convergence of chronic disease with an infection,” says UNC’s Beck. And the data suggest that the combination of these two can lead to more serious illness. “We’re seeing that obesity can have a great influence on infection,” she says.

So, will this shine a spotlight on the need to address these issues? “Hopefully,” Beck says. “I think paying attention to these chronic diseases like obesity is in everybody’s best interest.”

Source: Who’s Hit Hardest By COVID-19? Why Obesity, Stress And Race All Matter

Paradkar: Unlike Canadians, Americans at least know how Black people are faring with COVID-19 (very badly)

Agreed but not only a Black issue.

Need better health data on all visible minority groups (and Indigenous) given that poorer health outcomes generally go hand-in-hand with more vulnerable socioeconomic outcomes:

“Let me rant,” said Angela Robertson, “because you’ve sparked me.”

As executive director of the Parkdale Queen West Community Health Centre, Robertson has long been a front-line witness to the lives of the most marginalized in the city — the homeless, the undocumented, the working poor — all of whom are also disproportionately racialized.

We are discussing the horrendous data streaming from the U.S. on the rates at which COVID-19 is infecting and killing Black people. In Chicago, African-Americans account for 70 per cent of the 86 recorded deaths, but make up 29 per cent of the city’s population. Louisiana saw the same 70 per cent of deaths among African-Americans who constitute just 32 per cent of the population.

What about Black people in Canada, I ask her. Are they better off here compared to the U.S because of universal health care and because — here I wave the red flag — Canada is not as bad as the U.S.?

“As much as we have critiques of the health-care system in America, they have done data collection, they can disaggregate by race within health care,” she said.

“We in Canada have been glacial in our movement in the collection of race-based data in our health-care system. As a result we will not be able to identify the disproportional access challenges, deaths, illnesses that Black communities will experience as a result of COVID-19.

“My fear is that the real health impact on Black community will be hidden.”

COVID-19’s impact on Black people is highlighting the similarities and differences between the U.S. and Canada. They collect data. We don’t. We have universal health care. They don’t. But underlying structures in both nations are deeply racist, which means Black people on both sides of the border live in circumstances that leave them more vulnerable to illnesses at the best of times — and now make them susceptible to the ravages of the pandemic.

These structures are unleashing what the American author and anti-racism scholar Ibram X. Kendi called “a racial pandemic with the viral pandemic.”

Last Friday, Black health leaders in Toronto released a statement that identified the underlying risk factors that COVID-19 would amplify. “Ontario is home to the largest proportion of Black people in Canada. Here too, as in the rest of Canada, race is a determinant of health,” they said.

Who are the people who still need to use public transport to get to work? Who hold precarious jobs? Who don’t have the luxury to shelter at home and buy healthy provisions for a week or two? Who need rent relief? Who are most at risk from higher policing on the streets? Who are at risk in the prison system?

While race-based data exists around these social factors, hospitals and clinics don’t collect detailed demographic data including race as a matter of routine. Advocates have long railed against this lack of data, calling it harmful to Black women after research found they may be underscreened for breast and cervical cancer.

Andrew Pinto is a doctor at St. Michael’s Hospital. He is also the director of the hospital’s Upstream Lab — a research group that looks at interventions or remedies to the socio-economic factors that affect health.

The St. Michael’s Hospital Family Health Team, and other groups in Toronto including Toronto Public Health, was part of a pilot program to ask patients questions on income, race, gender, housing, religion, etc., and then use this data to identify health inequities, Pinto said. Researchers found doing such a survey was “feasible and acceptable.”

“Social factors are definitely associated with health outcomes,” he said. Many studies show income and race play a big role. “We lack the data that we need in Canada to really be able to pinpoint inequity by race. That’s what our work is trying to move toward.”

Why do we need the data if we know discrimination already exists? “Data helps with accountability. It’s not just to document inequity. We need to anticipate the inequity and think about how do we hold our systems to account.”

On the plus side of the ledger against the U.S, Canada has universal health care. Even then there are gaps.

While Ontario advocates who campaigned under OHIP For All managed to open health care for people regardless of their immigration status, “what we are concerned about while policy has changed, practices on the ground have not changed,” Robertson said.

Even during the pandemic, Robertson heard reports of people turning up in emergency departments and being asked to pay $500 for treatment.

What about the people who don’t turn to agencies for support? “For folks who because of fear walk away, they walk away ill,” she said.

Pinto points out that the “danger of data collection is it can convey that something is being done. Data alone is not sufficient. There has to be commitment that it should come with change.”

In a crisis like this, governments at all levels have to look at their response policies through the eyes of the most vulnerable and account for bias. This is particularly important for Black people who are among the most discriminated people here.

If this is not done, as the Black leaders’ statement said, “Black people will be exposed to greater harm.”

Fear over coronavirus prompts school board in Ontario to warn parents about racism against Chinese community

Not unexpected and always the challenge in communicating the origins of a specific risk and the impact on the community, irrespective whether historical tropes are involved or not. And I assume that some of these fears are shared by many Chinese Canadians:

The message York District School Board staff had been sending to parents on the coronavirus was pretty standard: Wash your hands; stay home if you’re sick; cover your mouth and nose when you sneeze. Then they saw the petition.

More than 8,000 people were calling for school boards in the region north of Toronto – a region in which the top reported ethnic origin is Chinese – to not allow students whose family members had travelled to China within 17 days to come to school.

On Monday, the York board released a note to parents to address another virus: anti-Chinese xenophobia.

“We are aware of an escalated level of concern and anxiety among families of Chinese heritage,” wrote Juanita Nathan, the board’s chair, and Louise Sirisko, its education director. “Individuals who make assumptions, even with positive intentions of safety, about the risk of others, request or demand quarantine can be seen as demonstrating bias and racism.”

Though public-health officials across the country have urged Canadians to take a measured response to the coronavirus, a panic akin to the one from 2003’s SARS outbreak has already taken hold. To date, there is one confirmed and one presumptive case of the new virus in Canada.

Avvy Go felt a tickle in her throat on the subway ride to work Monday, but willed herself to suppress the cough. She feared coughing on public transit as a Chinese woman might make her a pariah as it did for so many other Asian-Canadians during the SARS outbreak.

In Yellow Peril Revisited, a 2004 report about the impact of SARS (severe acute respiratory syndrome) on Canada’s Chinese community, Ms. Go, the director of the Metro Toronto Chinese & Southeast Asian Legal Clinic, detailed the myriad ways SARS affected her clients: Many suffered job losses after Chinese restaurants saw a steep drop in business; Asian claimants who appeared before the Immigration and Refugee Board faced staff wearing masks; and tenants reported being threatened with eviction by their landlords because they were Chinese.

Ms. Go shared much of this when she testified at Ontario’s public hearings on the SARS crisis but she was disappointed to find nothing about racism in the inquiry’s 2007 report. Recommendations on how to respond to racist rhetoric would have been helpful for future outbreaks such as this one, she said.

“As they prepare for the virus, they [should] also prepare for the virus of racism and have everything in place at the same time,” she said.

When Toronto Chinatown Business Improvement Area chair Tonny Louie addressed the crowd at Saturday’s Lunar New Year parade, he felt the need to explain his sore throat.

“I reminded everybody there that I do not have the virus. I just happen to have a cold,” he said.

The next day, he noticed a drop in business throughout downtown Toronto’s Chinatown and its dozens of restaurants – something he blames on fears about the virus. He repeated the message that the district was safe, as was the food, and called on politicians to have meals in Chinese restaurants as then-prime minister Jean Chrétien did during the 2003 SARS outbreak to signal to Canadians that doing so was safe.

But that sort of PR move might not be enough to counter racist messaging, given the power of social media.

In the past few days, video of a woman eating a bat with chopsticks in a restaurant has gone viral, with many suggesting, in posts heavy with racist rhetoric, that Chinese people eating foods seen as unusual to a Western palate has contributed to the outbreak.

The way in which the video has been shared has vilified and othered Chinese people, says Kevin Huang, executive director of the Hua Foundation, a Vancouver-based non-profit that promotes racial equity.

Rather than thinking of the coronavirus as an us-versus-them situation, Mr. Huang suggests using a global lens.

“Removing our Western exceptionalism and … humanizing [Chinese people] allows us to think about a more global concerted effort to try and contain this virus,” he said.

Why people would share misinformation like that while ignoring facts from public-health agencies speaks to how racist content “feeds into already pre-existing underlying biases or prejudices,” York University sociologist Harris Ali said.

In a research paper about SARS and the stigmatization of the Chinese population in Canada, he found that racist sentiments that had previously been internalized or only shared during private conversations “found explicit expression during the outbreak.”

Mr. Huang says the way some have drawn a connection between the virus and Chinese food is part of a long history of “yellow peril” or anti-Chinese sentiment.

Government policy that disenfranchised Chinese people, such as the head tax (an immigration tax imposed on Chinese arrivals), “fed into these tropes of this disgusting, uncivilized cultural grouping,” he said.

He has seen rampant misinformation and panic spread among Chinese-Canadians, too, some of whom are reacting to alarmist Chinese media reports. Last weekend, two Lunar New Year events in Vancouver were cancelled because of fear of the virus’s spread.

Ms. Go feels confident the Canadian health-care system is much better equipped to deal with containing coronavirus than it was with SARS, but she has little optimism about how it will contain the public’s fears.

“Unfortunately, because of the underlying racist attitudes that exist in Canadian society, it doesn’t matter what scientific evidence is there of how the disease has been contained, people will still believe what they believe,” she said.

Source: Fear over coronavirus prompts school board in Ontario to warn parents about racism against Chinese community Though public-health officials have urged Canadians to take a measured response, a panic akin to the one during 2003′s SARS outbreak has already taken hold
Fear, fear, fear.

The word appears repeatedly in the headlines and stories about the new coronavirus.

But what is fear? What causes us to be fearful? How can we assuage the public’s distress?

The dictionary definition of fear, the noun, is “an unpleasant emotion caused by the belief that someone or something is dangerous, likely to cause pain, or a threat;” and the verb, “to be afraid of (someone or something) as likely to be dangerous, painful, or threatening.”

In public health terms, “fear” is our perception of risk, of danger.

We tend to be more fearful of new threats to our health, such as coronavirus, than of well-established ones, such as influenza, no matter how irrational that is.

To date, there have been about 4,500 recorded cases of Wuhan coronavirus and 106 deaths. By comparison, three to five million people contract serious flu cases requiring hospitalization annually and somewhere between 290,000 and 650,000 die. Yet, both are respiratory illnesses spread in a similar fashion.

When it comes to being fearful, better the devil we know than the one we don’t, apparently.

If the unknown fuels fear – and it does – then our best weapon against coronavirus is knowledge.

The good news is that the science is advancing at breakneck speed and with an unprecedented level of co-operation.

The coronavirus genome was decoded in fewer than 10 days and the results shared publicly. As a result, researchers are already working on novel treatments and potential vaccine targets.

Scientific journals, normally highly protective of their papers, have agreed to share them with public-health officials prior to publication and lifted their paywalls for articles about coronavirus.

That means we already have a sense of how infectious coronavirus is (moderate) and a sense of who is being infected (a broad range of people) and who is dying (largely patients with underlying chronic conditions).

But, of course, good science alone cannot assuage fear.

The way public-health officials and the media communicate information is key to shaping perceptions. Increasingly, there is a wild card in this equation – social media.

The mainstream media fearmongers, however inadvertently, by using exaggerated language like “killer virus” and by fixating on body counts. When you constantly update the number of cases and deaths, you wildly amplify incremental change. Of course people will be scared. Imagine if we sent out push alerts for every tuberculosis death (1.5 million a year) and every measles death (140,000 annually).

Finding the balance between providing up-to-date information on a new threat and putting that threat into context is not easy.

On social media, there is too often little attempt to do so. From WeChat to Twitter, wild rumours and outright falsehoods fly routinely, as do unhinged demands such as shutting down all air traffic from China, quarantining all travellers and so on, with many of these purported measures driven by thinly veiled racism and xenophobia rather than science. (For the record, there is little evidence that massive quarantines or thermal screening of passengers has any benefit in stemming transmission of diseases like coronavirus.)

The most difficult communications challenge, however, lies with public-health officials who have to simultaneously track the shifting science, ratchet up preparedness and calm public fears.

Peter Sandman, a former professor of journalism at Rutgers University and a risk-communications guru, says the one thing public officials (or the media) should never do is tell people not to panic. That’s because, in crisis situations, people rarely do panic.

Prof. Sandman actually has a brilliant list of tips for those who need to calm people’s fears about unknown threats such as the coronavirus:

  • Don’t over reassure; talk about most likely scenarios rather than worst case ones;
  • Acknowledge uncertainty; paradoxically, saying “I don’t know” reassures the public;
  • Deliver clear, consistent messages;
  • Don’t be dispassionate; when experts speak of their personal fears, it makes them more relatable;
  • Give people things to do to protect themselves, such as urging handwashing; what fuels fear is powerlessness;
  • Don’t worry about panic, as was already mentioned.

What each of these elements has in common is that they are about building trust. What calms people’s fears is not just having information, but trusting the source of that information.

Risk communication is fraught with peril – and more often than not, we won’t get it quite right – but it is also essential.

As Franklin D. Roosevelt famously said, “The only thing we have to fear is … fear itself – nameless, unreasoning, unjustified terror which paralyzes needed efforts to convert retreat into advance.”

Source: What should we fear more: Coronavirus or fear itself? During an outbreak such as the coronavirus, building trust through communication is key: André Picard