Canada needs a national database to track COVID-19 vaccination in real time

Good analysis on the need by Michael Wolfson, a former assistant chief statistician at Statistics Canada.

One of the frustrations I encountered with the non-resident birth data was that Quebec does not automatically include its health data as a matter of course in the Canadian Institute of Health Information, with Quebec refusing to provide me with the comparable data (given health provincial jurisdiction, point of principle over-riding common sense).

So not sure how realistic Wolfson’s proposal is but better and consistent data helps all:

With Canada in the midst of rolling out the vaccines, the importance of effectively monitoring the immunization campaign is coming to the fore. The federal government has recognized the importance of monitoring data, at least within federal jurisdiction, and the prime minister himself recently emphasized the federal government will “be a partner with the provinces  … [for] better co-ordination of data.”

The government response nicely recognizes the lead role of the provinces in setting priorities for vaccination. And the federal government appears sanguine about the existing jumble of layers of vaccine-monitoring data systems, including for adverse reactions.

This co-operative federalism is wonderful—when it works. However, for anyone with experience in software, databases and statistical analysis, the vaccination monitoring described sounds like a dog’s breakfast. That’s not good enough when lives are on the line.

Standard adverse-event reporting systems in the U.S. and Canada missed the scandalous connection between Vioxx and heart attacks. Something more reliable is essential for COVID-19 vaccinations, not only for safety but to avoid misinformation from anti-vaxxers.

Canada has world-class potential for statistical surveillance of adverse health events in the electronic health databases housed in each province. But these data often reside in multiple impenetrable silos within each province.

The COVID-19 pandemic has dramatically increased the urgency of breaking down these data silos. One of the most important blockages has been provincial insistence that health care is their show; the only role for the federal government is to hand them more money, no strings attached.

This has to stop.

Specifically, for a vaccine registry and monitoring, the obvious solution is a single standardized system, mandated by the federal government using its constitutional jurisdiction for statistics. The federal government could commission an organization—Statistics Canada is an obvious choice—to immediately develop a secure, real-time data-collection portal or site for critical information on every person who is vaccinated for COVID-19.

This software system would be used in clinics, doctors’ offices, and drugstores. The nurses and other health professionals giving the vaccination would enter information, exactly as done for flu vaccinations. But now, some of the information would be federally mandated, over and above anything recorded for patients’ medical records and provincial billing purposes.

Decades of experience have shown that rhetoric about federal-provincial co-operation has continually failed, resulting in the patchwork of incoherent and incomplete data that have been limiting too much of the science for managing Canada’s pandemic, and the health-care sector more generally.

The federal government was successful in eliminating doctors’ extra billing by holding back transfers to the provinces. But with no strings attached, a number of provinces have been shamefully clawing back some of the COVID-19 cash payments the federal government has sent to the neediest Canadians by reducing or cancelling their social assistance. To ensure effective implementation of this monitoring solution, strong fiscal sanctions should be included if provinces do not co-operate.

Real-time, federally mandated vaccine monitoring will provide crucial information on vaccination uptake not only by province, but also by neighbourhood, type of vaccine, race/ethnicity and occupation —enabling provincial and local public-health authorities to target vaccinations to the vulnerable. This is not federal intrusion into provincial jurisdiction; it is simply the most efficient constitutionally enabled way to provide critical information.

There is no reason that this kind of software could not be adapted and made available across the country for vaccinations in a matter of weeks, along with speedy agreements on data standardization.

While confidential personal data are involved, Statistics Canada has, for decades, collected exactly such data in the monthly labour-force survey (recently doing so online), with exceptionally strong safeguards for security and confidentiality.

There are obvious privacy concerns. However, we must be careful not to allow them to overshadow the potentially huge benefits. The framers of Canada’s constitution, over a century and a half ago, recognized the fundamental importance of critical statistical information that is national in scope.

While the proposed data flows may raise concerns among provinces and territories regarding ownership, these can be ameliorated with clear ground rules on how they can access these data.

Privacy commissioners across Canada have adopted the principles of necessity and proportionality as the central criteria for data collections that raise privacy concerns. For pandemic vaccination, with the deaths of potentially thousands of Canadians in the balance, these criteria would clearly be met.

Now, more than ever, Canada needs a strong national approach for monitoring data to ensure vaccination proceeds effectively, fairly and safely.

Michael Wolfson is a former assistant chief statistician at Statistics Canada and a member of the Centre for Health Law, Policy and Ethics at the University of Ottawa.

Source: Canada needs a national database to track COVID-19 vaccination in real time

Study: Structural racism has material impact on health of ethnic minorities, immigrants

Medical study:

Structural racism can lead to discrimination in many aspects of life including criminal justice, employment, housing, health care, political power, and education. A new study published in the American Journal of Preventive Medicine examines the impact of structural racism on health and confirms that chronic exposure to stressors leads to a marked erosion of health that is particularly severe among foreign-born Blacks and Latinx. Investigators say largescale structural policies that address structural racism are needed.

Structural racism is defined as laws, rules, or official policies in a society that result in a continued unfair advantage to some people and unfair or harmful treatment of others based on race.

There is evidence that structural racism has a material impact on the health of racial/ethnic minorities and immigrants. Comparing allostatic load–a multidimensional measure of the body’s response to stressors experienced throughout the life course–between immigrants and non-immigrants of different racial/ethnic backgrounds can help shed light on the magnitude of health differences between groups.”

Brent A. Langellier, PhD, Lead Investigator, Department of Health Management and Policy, Dornsife School of Public Health, Drexel University

Investigators examined patterns in allostatic load among US- and foreign-born Whites, Blacks, and Latinx. Using data from the 2005-2018 National Health and Nutrition Examination Survey (NHANES), they collected data on a 10-item measure of cardiovascular, metabolic, and immunologic risk.

Measures of cardiovascular risk included systolic blood pressure, diastolic blood pressure, total cholesterol, and high-density lipoprotein cholesterol. Metabolic risk indicators included body mass index (BMI), blood sugar (HbA1c), urinary albumin, and creatinine clearance. Immunologic measures were white blood cell count and current or previous asthma diagnosis.

Based on the literature suggesting that, for many outcomes, immigrants have paradoxically good health that declines with time in the US, investigators examined aging gradients in allostatic load for each group. They also assessed whether allostatic load in each group changed across NHANES survey cycles. Their analyses were conducted in March 2020.

Results showed that allostatic load increased with age among all groups, but the increases were much steeper among foreign-born Blacks of both genders and foreign-born Latina women. The difference between the first and last survey cycle was most pronounced among US-born Black women (from 2.74 in 2005-2006 to 3.02 in 2017-2018), US-born Latino men (from 2.69 to 3.09), and foreign-born Latino men (from 2.58 to 2.87).

Aging gradients in allostatic load were steepest among foreign-born Blacks of both genders and foreign-born Latina women, and flattest among US-born and foreign-born Whites. Notably, foreign-born Latina women had among the lowest allostatic load at the youngest ages but among the highest at the upper end of the age distribution.

“Our findings add to the evidence that structural racism has a material impact on the health of racial/ethnic minorities and immigrants – and that this effect accumulates throughout the life course,” noted Dr. Langellier. “They further suggest that the disadvantage experienced by racial/ethnic minorities is compounded among minorities who are also immigrants, which erodes the health advantage that many immigrants have at early ages.”

These findings highlight the magnitude of the disparities in health that are produced by inequities in exposure to these risk and protective factors. “Collectively, our findings and evidence in the broader literature suggest that reducing these disparities will require big, structural policies that address structural racism, including inequities in upstream social determinants of health,” concluded Dr. Langellier.

Source: Study: Structural racism has material impact on health of ethnic minorities, immigrants

Inequities in COVID-19 Health Outcomes: The Need for Race- and Ethnicity-Based Data (Library of Parliament Research)

Good background note:

For Indigenous peoples, Black Canadians and other racialized groups, race and racism are important social determinants of health.

Social determinants of health may contribute to negative health outcomes or health inequities, which are differences in health outcomes that could reasonably be avoided among groups, such as racial or ethnic groups. Addressing inequities through inclusive policies and legislation relies on the collection and availability of data disaggregated by various identity factors, such as ethnicity. However, collecting race-based health data remains a challenge in Canada.

Canadian health care stakeholders have identified racism as a public health emergency and emphasized its profound negative effects on Indigenous peoples and racialized groups. The Chief Public Health Officer of Canada’s Report, released in October 2020, asserts that COVID-19 has not affected people in Canada equally. The report recognizes Canada’s history of systemic racism and colonization and the role of social determinants of health in existing health inequities among Canadians.

This HillNote examines the role of race and ethnicity in COVID-19 health outcomes in the United States (U.S.) and the United Kingdom (U.K.), countries that systematically collect race-based health data, as well as initiatives to collect these data in Canada.

Health Inequities and COVID-19 in the United States and United Kingdom

Certain health data disaggregated by ethnic group or race have been collected in the U.S. and U.K. for years. Research in the U.S. indicates that, compared to white Americans, racialized groups tend to face disproportionately elevated risks of COVID-19 diagnosis, hospitalization and death. According to age-adjusted data, Indigenous, Black, Latino, Pacific Islander and Asian Americans face elevated risks of COVID-19 death compared to white Americans.

Number of COVID-19 Deaths per 100,000 population in the United States, adjusted for age by Racial or Ethnic Group, 10 November 2020

The bar graph shows the number of COVID-19 deaths per 100,00 deaths in the United States, adjusted for age, by racial or ethnic group. The various racial and ethnic groups are arranged along the vertical axis in order to highest number of deaths to lowest. Indigenous Americans have the highest number of deaths, at 164.7 per 100,000, closely followed by Black Americans with 153.2 deaths per 100,00. White Americans show the lowest number of deaths, with 50.9 deaths per 100,00.

Source: Figure prepared by author using data from APM Research Lab, “The Color of Coronavirus: COVID-19 Deaths by Race and Ethnicity in the U.S.,” 10 November 2020.

Similar trends have been identified in the UK. For example, data from the first wave of COVID-19 show that members of ethnic minority groups in England died at higher rates than expected, based on their demographics, in contrast to the white population.

Excess Deaths (%) during the pandemic in England by Ethnic Group, 28 April 2020

The bar graph shows the percentage of excess deaths based on expected number of deaths and actual number of deaths based on population structure of racial and ethnic groups. Black, Asian, and Minority Ethnic (BAME) population groups all show a positive excess death percentage, with Black background showing 341% excess deaths. The white population group shows a negative excess death percentage, at -13% excess deaths. The graph concludes that the Black background group is dying at higher rates than the white background group.

Source: Figure prepared by author using data from Abdual Razaq, Dominic Harrison, Sakthi Karunanithi et. al,“BAME COVID-19 Deaths – What do we know? Rapid Data & Evidence Review,” Centre for Evidence-Based Medicine University of Oxford, 5 May 2020.
Note: Excess deaths represents the difference in “Observed deaths” and “Expected deaths” for different population groups, based on the size, age and structure of the population.

study analyzing the results of 50 studies published between December 2019 and August 2020 from the U.S. and U.K. exploring the relationship between ethnicity and clinical outcomes in COVID-19 concluded that individuals from Black, Asian and Hispanic ethnic backgrounds had a higher risk of SARS-CoV-2 infection compared to white individuals. The study highlights underlying inequities that may contribute to the elevated risks for some groups, including structural racism, barriers accessing health care, potential for increased transmission in overcrowded housing, and overrepresentation in essential occupations.

Health Inequities and COVID-19 in Canada

In Canada, COVID-19 data disaggregated by race have not been systematically collected. However, certain provinces, such as Ontario and Manitoba have begun collecting data on race, ethnicity, and in some cases Indigenous identity, for COVID-19 cases. In addition, some municipal public health agencies, such as TorontoOttawa and Montreal, have begun collecting and analyzing similar data.

Preliminary data show that in Toronto, while 52% of the population identifies as belonging to a racialized group, as of September 2020, 82% of COVID-19 cases and 71% of hospitalizations were among people belonging to racialized groups. Similarly, data from Ottawa show that members of racialized populations, particularly those who identify as Black, are overrepresented among individuals diagnosed with COVID-19.

Furthermore, during the first wave of the pandemic, Statistics Canada indicated that COVID-19 mortality rates were higher in Canadian neighbourhoods with higher proportions of population groups designated as visible minorities. These analyses suggest that factors such as overcrowded households, “less favourable living conditions,” employment in essential or frontline work, and barriers or discrimination in accessing services, such as those related to health and education, may contribute to the elevated risk for individuals belonging to racialized groups.

Collection of Race, Ethnicity and Indigenous Identity Health Data in Canada

According to health experts, policymakers need disaggregated data to properly understand and meet the needs of specific groups of people. The collection of Canadian health data is a shared responsibility between federal, provincial and territorial governments. Provincial and territorial public health authorities are responsible for reporting data, including COVID-19 case-related data, to the federal government.

At the federal level, the Canadian Institute for Health Information (CIHI) and the Public Health Agency of Canada are responsible for collecting and reporting nationally on health data that have been voluntarily provided by the provinces and territories. Statistics Canada collects various types of socioeconomic survey data that could be used to understand the indirect impacts of COVID-19.

The collection of national race-based health data in Canada is fragmented, with no national approach to date. COVID-19 has reinforced calls for the collection of such data. Some organizations, such as the Canadian Human Rights Commission, have called for a national strategy to improve the collection of Indigeneity and race-based data.

In July 2020, CIHI stated “[t]he lack of race-based data in the health sector in Canada makes it difficult to measure health inequalities and to identify inequities that may stem from racism and discrimination.” In response to the “urgent” need to understand the impact of COVID-19 on racialized communities in Canada, CIHI proposed a pan-Canadian standard in July 2020.

CIHI’s proposed standard, adapted from the Ontario Anti-Racism Directorate’s standards, defines race and ethnicity, and asserts that First Nation, Métis and Inuit people in Canada “have a constitutionally recognized status that is unique” and that Indigenous identity data “merit distinct considerations.” CIHI is currently seeking feedback regarding best practices and approaches to implementing these standards and collecting race-based data.

Racism and discrimination have been identified as significant determinants of health outcomes for racialized groups in general and during the pandemic. The Black Lives Matter movement has drawn global attention to the devastating effects of racism and racial inequality prior to, and during, the pandemic. Experts assert that the collection of race-based health data is integral to the recovery from the COVID-19 pandemic and that this data collection must be followed by action.

Source: https://hillnotes.ca/2020/12/08/inequities-in-covid-19-health-outcomes-the-need-for-race-and-ethnicity-based-data/

How A Minneapolis Clinic Is Narrowing Racial Gaps In Health

Of interest:

North Minneapolis, one of the most racially diverse neighborhoods in Minnesota, was already dealing with high coronavirus infection and death rates when George Floyd was killed by police outside a corner store just 3 miles away.

His death on May 25 sparked deeper conversations all across the U.S. about the ways racial inequality plays out, including when it comes to health. Nationally, Black people are at least twice as likely to die from heart disease, from COVID-19 or in childbirth, compared with white people, and north Minneapolis mirrors those trends. Nearly two-thirds of Latinos in the area who get tested for the coronavirus test positive — that’s a rate nearly 10 times higher than the state’s rate overall.

“We were not surprised, because we serve a community that has health disparities,” says Stella Whitney-West, CEO of NorthPoint Health & Wellness Center, a community health and dental clinic and social services agency located in the heart of north Minneapolis.

Stella Whitney-West has been CEO of NorthPoint Health & Wellness Center for the last 16 years. “Our staff is reflective of our community that we serve,” she says.

But NorthPoint also has a five-decade history of addressing public health through the lens of race. It was founded with a mission to increase access to health care and social services in a community that today is 90% Black, Latino or Asian.

Central to its approach is tackling the social problems that contribute to illness — in order to better prevent and treat disease. Over the years, the center has made strides in public health: increasing the rates for child vaccinations and screenings for things like cancer, depression and dental care needs.

Of course the coronavirus pandemic has also added weight to many existing social burdens that contribute to poor health: loss of employment and insurance, poverty and food scarcity, stress and anxiety. Whitney-West says the racial strife layered on top of that also feels like a step backward.

“It’s been hard — not only for the community but patients, clients and our staff,” says Whitney-West. “Our staff is reflective of our community that we serve. Civil unrest — the riots in the aftermath of George Floyd’s death — brings us back to the history of how NorthPoint was started.”

The NorthPoint center began during a time eerily reminiscent of today.

NorthPoint is located at a corner of Plymouth Avenue that burned down during protests and rioting in 1967, when long-standing grievances in the Black community over lack of access to adequate housing, education and health care turned violent.

“I was 10 years old at the time, but it was very traumatizing to see all these Black people getting beat up by police and the fires right on our block,” says Gary Cunningham, who lived on Plymouth Avenue and watched it burn that night.

Inadequate access to medical care was a major issue that shaped life for Cunningham and his neighbors.

“There was an issue with ambulance service,” Cunningham says. “The ambulance wouldn’t serve the Black community there,” so he and his mother would take the bus across town when they needed care. “Most Blacks went to Dr. Brown — his office would be like 200 people in the waiting room because he was one of the few Black physicians.”

The federal government tried to increase access to health care for minorities. Among other efforts, President Lyndon B. Johnson’s War on Poverty established pilot programs in 14 cities to offer health and social services.

North Minneapolis got one of those programs. Months after the 1967 riots, Pilot City — which later became NorthPoint — opened in an old synagogue on Plymouth Avenue.

“I just remember it being a place where community gathered. The health center and social service center at that time were one place,” Cunningham recalls.

Nearly four decades later, Cunningham took over as the clinic’s CEO.

By then, Pilot City had fallen into disarray — its public image was that of an impoverished clinic of last resort. By 2002, when Cunningham took over, he says, it was running a $2 million annual deficit, and few patients were getting regular vaccinations or mammogram screenings.

So Cunningham refocused on Pilot City’s original mission: to increase access to health care by also identifying and enhancing social services to support that goal.

Cunningham’s team developed some innovative solutions to bring more patients in, including providing bus tokens to patients who couldn’t otherwise afford transportation. NorthPoint’s new approach reached a growing Somali and Hmong population in the area through hosting lunch events with religious leaders and featuring food from those communities. Over the last 15 years, vaccination and health screening rates more than doubled, to close to 80%.

That has meant more prevention of disease and lower costs for treatment and care.

Diabetes, lead poisoning and depression are also big problems in the community. So NorthPoint lobbied local agencies to get lead paint safely removed from homes. The center stocks a free-food shelf with healthy, culturally relevant food. All patients — regardless of what health problem they come in for — are now automatically screened for depression and dental care needs and are told to bring their family members in as well.

Enlarge this image

NorthPoint’s founding mission was to increase access to health care and social services. Over the years, this approach helped the clinic increase the neighborhood’s rates of child vaccinations and screenings for things like cancer, depression and dental care needs.

These measures have increased NorthPoint’s reach into a diverse community — something many other medical centers facing similar dynamics are struggling with today.

Rashida Jackson first came to NorthPoint as a patient in childhood, and is now community board member. The clinic, she says, is a beloved part of the community.

As a child, Rashida Jackson, 52, came to NorthPoint for health care, and now her mother, children and all her grandchildren see their doctors there.

Jackson is now on NorthPoint’s board of directors, which draws a majority of its seats from patients like her, who are members of the community.

“This is one of those powerful institutions that developed out of a lot of civil unrest and pain,” says Jackson, “and it’s a thing of pride to see this small community health clinic explode and grow. Whatever social service support you need, they have.”

That’s why the center is so beloved by the community, she says: “We own it, it’s family — it’s almost a living, walking, breathing thing.”

And today, NorthPoint is once again being held up as a model.

This past summer, in the wake of George Floyd’s death, Minneapolis and the Hennepin County Board of Commissioners declared racism a public health crisis.

Irene Fernando, one of the co-authors of the county’s declaration, says just as NorthPoint has done in the health realm, the county wants other government agencies to rethink policy — by looking at how race affects outcomes in education, employment and criminal justice.

“NorthPoint listens to the community,” says Fernando, who also serves on NorthPoint’s board. “Earlier than other entities, NorthPoint was reporting on race; earlier than other entities, NorthPoint was willing to do free testing for COVID.” So thinking about improving access to health care “is in how NorthPoint operates,” she says.

One reason its approach differs from those of other health centers is that it is a community health clinic, not a hospital, says Ed Ehlinger, former Minnesota health commissioner, who has written about racism in health.

That means, he says, its mandate is to improve public health in the community; it’s not under the same commercial pressures many private hospitals are up against.

Ehlinger compares NorthPoint to medical centers in countries that have universal public health care. “They focus on community-oriented primary care and have much better outcomes and lower health care costs,” he says. “So even though there aren’t as many of those neighborhood health centers left, I see them as the model that we should look to replicate, in moving forward.”

At a time when few patients trust their health care providers, NorthPoint has bucked that trend.

LaVonne Moore, a midwife and lactation consultant with the center, says that’s in part because NorthPoint recruits its leaders and doctors from the community it serves.

Moore, who lives nearby, says that interconnection between residents and staff fosters enduring, trusted relationships with patients and a level of care that is highly unusual today.

“I’m a provider,” she says. “I have dropped medicines for COVID-19 patients at their door: I just leave it at the door, go back in the car, make sure they know what’s out there, and they come to the door and pick it up.”

That trust is critical, especially given the gravity of problems that north Minneapolis faces these days: Nearly two-thirds of Latino patients who test for the coronavirus at NorthPoint are testing positive. While that’s an alarmingly high rate, CEO Whitney-West says it’s also a positive sign. A significant number of those patients are undocumented immigrants, she notes, and the findings suggest they trust NorthPoint enough to get tested at the center.

And from a public health standpoint, that’s a win, she says, because you need to know where the virus is in order to stop its spread.

Source: How A Minneapolis Clinic Is Narrowing Racial Gaps In Health

Opinion: Diversity of thought needed in our pandemic response

Good, thoughtful commentary that applies more broadly than to the pandemic, and the risks of simplistic thinking and solutions:

Over the past nine months, we have seen an incredible change in the way we live, work and interact. The world is clearly different now. Our lives are intertwined with the evolving COVID-19 pandemic, and many look to experts from a variety of fields for guidance. Medical, public health and scientific leaders have become sources of insight and direction. Many may think there is only one “scientific truth,” and therefore every expert should be of the same opinion. But science, particularly when dealing with a novel threat, comes with many uncertainties.

As with any important issue, personal values influence how people interpret the science. We all have biases, which are influenced by our life experiences, cultures, emotions and personal beliefs, and experts are susceptible to these factors, as well.

This matters because diversity of thought, spurring civil debate, can help us collectively think through complex issues such as our pandemic response. Disagreement among experts is a normal and essential part of scientific discourse, as data continues to accumulate over time. However, one’s inherent beliefs and biases may play a significant role in the interpretation of the evidence at hand, and the messaging that follows.

Some may be motivated by their fear of infection, some by an urgent desire to return to a sense of normalcy and others by political or ideological beliefs, or even a need for notoriety. Some of the more polarizing views are what sow division among the population.

Oftentimes, the loudest voices espousing simplistic answers are not the correct ones, yet they may garnish the most attention and support in the media and online. The public — not aware of all the nuances — may lose trust in science after being bombarded with polarized, and often incorrect, views that are given as much, or more, attention than those that follow fundamental scientific principles and are transparent about their level of uncertainty. This eroding trust in the scientific community further splits populations.

Due to the emotions at play and the public-facing nature of the discussion, scientific discourse risks becoming politicized and devolving into a polarized conflict.

On the one extreme, discussion is interpreted as fear-mongering by people who think the potential harms of COVID-19 have been greatly exaggerated and that the harms of certain interventions have been underestimated. On the other extreme, the idea of personal freedoms are elevated over disease control and the focus becomes primarily on the harms of lockdown. Both of these positions have a nugget of truth in them, but the dogmatism may preclude any meaningful discussion that could lead to an evidence-based consensus.

Moderate voices that try to find a balance between the two more extreme views matter in this pandemic. It is important to listen to arguments from across the spectrum and try to interpret the data in as nuanced and unbiased a manner as possible. This is a tall order, as the moderate view often carries with it significant uncertainty, and pivots as available evidence evolves.

Recognizing the nuances and complexity of disease is crucial to forming a more complete understanding. Moderate voices may not make headlines or get clicks because the answers to simple questions are long and complex, but they are important to listen to. The moderate voice is not one single voice: opinions vary between the two extremes and the answers are often complex.

In contrast, the more extreme viewpoints have a tendency to be amplified to a great degree within their own echo chambers, which can then be prone to politicization. This drives false dichotomies, and polarized discussions — such as masks versus no masks, aerosols versus droplets, lockdowns versus personal freedoms — where in reality, the answer often lies in between.

People with extreme views often choose to compare countries to prove their point, celebrating certain jurisdictions while condemning the approach of others, but give no consideration to the complex demographic, social, political and geographic factors that lead to particular situations, as well as the changes that occur over time.

Who can be trusted given all the conflicting information? First of all, diversity of thought is crucial. And second, it is important to recognize our own biases and how they influence our perceptions and how we interpret evidence. People who are adaptable to messaging and acknowledge uncertainty as the evidence evolves are key, given that the scientific method is meant to gain more precision over time. Dogmatic stances are best avoided.

We are moving into the future with an evolving roadmap for how to deal with COVID-19 — one that’s guided by lessons learned from our collective global experience. Different perspectives offer valuable insights in this pandemic and together they can offer a clearer picture of the truth. That said, the “infodemic” will continue with the pandemic, and it is important to try to put information into context, recognize our own biases and be willing to revise our positions in the face of new evidence.

We require a diverse group of voices at the table, but must continue to make an effort to foster healthy public discourse that’s free of politicization, by appreciating and considering the input of experts from all walks of life. The general population is as diverse as their experts in their values and opinions, and public policy should try to find the middle ground. Therefore, moving forward, now more than ever, a balanced, pragmatic and evidence-driven approach to the interpretation and messaging of the COVID-19 pandemic is needed.

Zain Chagla is an infectious diseases physician and an associate professor at McMaster University. Sumon Chakrabarti is an infectious disease physician with Trillium Health Partners Mississauga and a lecturer at the University of Toronto. Isaac Bogoch is an infectious disease physician at Toronto General Hospital and an associate professor at U of T. Dominik Mertz is an infectious disease physician and an associate professor at McMaster.

Source: https://ottawacitizen.com/opinion/opinion-diversity-of-thought-needed-in-our-pandemic-response/wcm/c064636f-583e-41e0-8c8f-3b65a3b14e8b

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.