Canadians’ health data are in a shambles

Unfortunately, all too true, with too few exceptions, based upon my admittedly anecdotal experience in Ottawa:

Canadians see new and increasingly powerful computerization in almost every facet of their day-to-day lives – everywhere, that is, except for something as fundamental as our health care, where systems are too often stuck in the past.

When we go to the doctor, we get prescriptions printed on paper; lab results are sent via fax; and typically, medical offices have no direct links to any patient hospitalization data. And while the pandemic sparked a mad scramble to set up many new data systems – to track who was infected, where there were ventilators, who has been vaccinated and with which vaccine – this has happened in a largely unco-ordinated way, with Ottawa and provincial governments each developing systems separately.

As a result, even these newest computer systems are duplicative, and they do not communicate across provincial boundaries, or even within some provinces – not even, for example, to connect vaccinations, infections, the genotype of the virus, hospitalizations, other diseases and deaths so they are centrally accessible. And so Canada’s recent health-data efforts have wasted millions of dollars while failing to provide the evidence base needed for real-time effective responses to the fluctuating waves of COVID-19 infections..

This kind of failure is not new. Even before the pandemic, key kinds of data have long been imprisoned by data custodians who are excessively fearful of privacy breaches, even though the data are generally collected and stored in secure computer databases. A broad range of critical health care data remains unavailable – not only for patients’ direct clinical care, research and quality control, but also for tracking adverse drug reactions, showing unnecessary diagnostic imaging and drug over-prescribing. The result is that major inefficiencies in the systems remain hidden – and may actually cause health problems, and even deaths by medical misadventure.

There are many directions one could point the finger of blame, but as a new report from the Expert Advisory Committee to the Public Health Agency of Canada found, the root cause is a failure of governance. Federal and provincial governments have failed to agree on strong enforcement of common data standards and interoperability, though this is not only a problem of federalism. Health-data governance problems are also evident within provinces where one health agency’s data system is not connected to others within the same province.

What Canada and the provinces have now is essentially provider-centric health-data systems – not just one but many kinds for hospitals, others for primary care, and yet others still for public health. What Canadians want and need is patient- or person-centric health data. That way, no matter where you are in the countryyour allergies, chronic diseases and prescriptions can be known instantly by care providers.

Private vendor-centric health-data software also pose a threat, as do data collected by powerful tech companies from new wearable technologies that offer to collect your health data for you. If Canada does not act swiftly and decisively to establish the needed governance, competing vendor software and individual data will continue the rapidly growing cacophony of proprietary standards. This trend is raising new concerns about privacy, along with untracked increases in health care costs.

The fundamental importance of standardized, interoperable, securely protected health data has been known for decades. There have been repeated efforts to achieve a modern effective health-data system for Canada. But federal cajoling and even financial incentives have failed. Much stronger governance mechanisms are required, and urgently, as the global pandemic has revealed.

The federal government has the constitutional authority to play a much stronger role, given its powers in spending, public health, statistics, as well as “peace, order and good government.” It also has readily available regulatory powers under the Canada Health Act.

Of course, high-quality data collection and data software have costs. But given the tens of billions of health care dollars the federal government is providing to the provinces through fiscal transfers, it is long past time they leveraged this clout – using both carrots and sticks – so Canadians can finally have informed, accessible health data when and where they need it most.

Michael Wolfson is a former assistant chief statistician at Statistics Canada, and a current member of the University of Ottawa’s Centre for Health Law, Policy and Ethics. Bartha Maria Knoppers is a professor, the Canada Research Chair in Law and Medicine, and director of the Centre of Genomics and Policy at McGill University’s Faculty of Medicine. They are both members of the Expert Advisory Group for the Pan-Canadian Health Data Strategy.

Source: https://www.theglobeandmail.com/opinion/article-canadians-health-data-are-in-a-shambles/

Ottawa, provinces must create agency to reform how health data is collected and used, report says

East to agree, hard to implement given provincial agreement needed. Even integration within a province is far from being implemented in a comprehensive manner:

The federal and provincial governments must create a national agency to set standards for the collection and sharing of health data to respond more quickly to threats such as pandemics and to improve patient care, a new report says.

The report, from a federal advisory group to be released on Tuesday, says governments across the country also need to change privacy laws to allow health records and data to be more easily shared – with patients, medical providers and public-health officials. That would require a significant culture shift away from a system that focuses solely on keeping data secure and private, and toward one that ensures health records and data can be used and shared safely.

The report says the systems across the country that aren’t standardized and can’t talk to each other have limited Canada’s ability to respond to COVID-19, including managing vaccines and tracking variants. More broadly, that reality is also hurting patient care, and could hamper the response to other health crises, the report says.

“We haven’t had this concept that people holding this data should be promoting its appropriate use, its timely use for the benefit of the individuals or for the entire population of Canada,” Vivek Goel, a public-health expert who chaired the review and is also president of the University of Waterloo, said in an interview.

The report is the second of three from the Pan-Canadian Health Data Strategy Expert Advisory Group, which the federal government launched last year to examine data problems exposed by COVID-19. While the group’s work was spurred by the pandemic, its recommendations are far broader, and call for dramatic changes to how Canadians’ health data are stored and managed.

The report says the systems for managing health records, and the privacy laws that oversee them, were designed and created for paper records and haven’t sufficiently been updated for a primarily digital system.

Most people can’t access their own health records, which also aren’t readily available to health care providers as patients move through the system, the report says. The document calls for a “person-centric approach” that would give patients control of their records and allow all of their health care providers to access them easily and securely.

“An integrated, person-centric health data structure ensures that all health data follows an individual through the course of their life-long care,” the report says.

It adds that creating a national system would require governments to agree on standards to ensure those records can be accessed regardless of where a patient is or which doctor they see.

While the report does not make detailed recommendations about managing such a system, Dr. Goel said it should be overseen by a body controlled by Ottawa, the provinces and the territories that would recognize – and address – the reality that health care falls under provincial and territorial jurisdiction.

“We need an entity that is co-owned, co-managed, co-supervised by the federal, provincial and territorial governments together in setting those standards,” he said.

It would also require changes to privacy laws. The report says current privacy laws turn health care providers into “custodians” of data, which, in turn, creates a “privacy chill” that prompts them to restrict access even if not required. Instead, the report proposes a model of “data stewardship” that “champions data sharing, access, use and protection.”

Dr. Goel said a system that standardizes health data and facilitates sharing with officials and experts in other jurisdictions would help governments identify and track public-health threats such as infectious diseases including COVID-19. He said the pandemic revealed how ill-equipped federal, provincial and local health agencies were to gather and share data.

For example, he said as new variants of COVID-19 emerge, such as the Omicron variant that is dominating headlines, it is crucial to track who is getting sick and how transmission and patient outcomes are affected.

To do that effectively, health officials need access to information not just from their own provincial or local health unit, but the entire country. That doesn’t require the same system for everyone, just systems designed to communicate.

He compared it to the Interac network, which allows transactions to be tracked between banks even if they are all using different systems. “There are models that we can learn from the private sector.”

Dr. Goel said governments would need the public’s buy-in to increase data sharing in this way, but he thinks they can be persuaded. He says patients may actually be surprised to learn how little information is shared for wider public-health surveillance, such as the details they provide to COVID-19 contact tracers.

Ewan Affleck, a doctor and an expert in health informatics who sits on the advisory group, said he routinely runs into problems accessing his patients’ records from other providers or jurisdictions.

He treats patients in the Northwest Territories, which sends many people to Alberta for surgery and other procedures, but he often can’t access their information easily – or at all.

“I have no means of getting it because of jurisdictional legislation laws, privacy concerns, and this impairs my capacity to provide care,” Dr. Affleck said in an interview.

“So we make mistakes, and those mistakes damage Canadians. This is happening all the time.”

Dr. Affleck said the same issues hamper Canada’s ability to track and respond to population-level health issues such as pandemics.

“Whether it is guiding our response to COVID or whether we’re treating a patient for a urinary tract infection, this is all based on our adjudication of information,” he said.

“Digital health in Canada is legislated to fail. We have to change that model, because it’s an antiquated model from the age of paper-based information, which worked well then, but it works terribly now. And it is actually damaging Canadians.”

Source: https://www.theglobeandmail.com/canada/article-ottawa-provinces-must-create-agency-to-reform-how-health-data-is/

Refugee, undocumented health-care workers demand access to permanent resident program

Of note given unsubscribed slots in the permanent resident pathway program for the healthcare stream:

Refugees and undocumented health-care workers are demanding they be allowed to apply for a government program that would grant them permanent status in Canada.

The temporary resident to permanent resident pathway program was announced in April as a way to keep skilled essential workers in the country, with a focus on retaining 20,000 hospital and long-term care workers.

While the government has already received the maximum number of applications for recent university graduates and other essential workers, there have been few applicants accepted to the health-care stream.

The program is set to close on Nov. 5 and has so far accepted only 5,421 applications.

The Migrant Workers Alliance for Change says that’s because refugees and undocumented people are barred from applying and many health-care occupations are excluded.

“I felt humiliated when the eligibility requirement excluded me,” said Fasanya Kolade, a Nigerian refugee and developmental support worker in Newfoundland and Labrador.

Kolade works primarily with seniors and adults with physical, developmental and intellectual disabilities, and said he pulled 65-hour weeks throughout the pandemic to care for his patients.

Despite meeting most of the criteria, he could not apply.

“The only criteria that excluded me was just that I am a refugee claimant,” he said in an online press conference Wednesday.

The program is only open to workers with temporary status in Canada, so even undocumented people with work permits cannot apply.

The program also requires applicants to meet language requirements, and have recent experience in an approved health-care occupation.

Those requirements can also limit eligibility for people who don’t have time to take the proper language tests, the Migrant Workers Alliance said.

The federal government launched a similar pathway program specifically for health-care workers with pending or failed refugee claims late last year, which closed to applications on Aug. 31.

Now with nearly 15,000 spots for temporary residents set to expire in just two weeks, the alliance is calling for the criteria to be expanded.

“Changing these rules, ensuring access for migrants, refugee claimants, undocumented people without economic, occupational restrictions and language restrictions is a no-brainer,” said Syed Hussan, executive director of Migrant Workers Alliance for Change.

“Otherwise these spots will just evaporate.”

Several people have applied, hoping the criteria would be amended, but have been denied.

“When I first heard of the health worker pathway I knew God had finally heard, not only my cries, but also other people in my situation,” said Jane, a Ugandan refugee and personal support worker in Hamilton, Ont. Her full name has been protected because of her lack of immigration status.

She fled her country after leaving an abusive and homophobic relationship and was disowned by her family when they learned she was a lesbian.

She applied for the pathway program with the help of a lawyer and waited, hoping the criteria would be expanded to include people with failed refugee claims, but she was denied.

There are many people with similar stories said Florence, a Ugandan asylum seeker who works in a Toronto residential home for young adults with complex developmental and physical disabilities. Her full name has also been protected.

She was denied because she had filed an asylum claim in the United States.

“Our hands are tied up. I cannot get a steady permit to pursue my dreams,” Florence said Wednesday. “I know there are very many of us like me who need papers.”

Immigration, Refugees and Citizenship Canada did not immediately respond to a request for comment.

Source: Refugee, undocumented health-care workers demand access to permanent resident program

Les agences privées écartées du recrutement à l’étranger

Of note (processing delays and impact on regions):

Des régions en pénurie de personnel auraient pu compter sur plus d’une centaine d’infirmières provenant de l’étranger, mais le réseau de la santé a tourné le dos à plusieurs offres de recrutement provenant d’agences privées, a appris Le Devoir.

Parmi elles, l’agence de placement Serenis, qui n’a pas ménagé ses efforts pour présenter un « projet clés en main » afin de faire venir au Québec une vingtaine d’infirmiers et d’infirmières originaires de la France et du Maghreb. « En ce moment, j’ai 20 infirmières et infirmiers hautement qualifiés qui sont en stand-by », affirme Jackie Lamothe, présidente de trois franchises de l’agence de placement Serenis, pour les régions de la Mauricie, du Centre-du-Québec et de la Montérégie Est.

Selon elle, ces professionnels de la santé ont été choisis par l’agence parce qu’ils sont prêts à aller travailler dans les régions éloignées où les besoins sont criants, comme à La Tuque. Et ils ont tous en poche l’évaluation comparative du ministère de l’Immigration qui indique l’équivalent québécois de leur diplôme.

« J’en ai parlé à des chefs de service des établissements de santé, qui en ont ensuite parlé à leurs supérieurs, et ils étaient tous intéressés. Mais ça finissait toujours par bloquer en haut, comme au niveau du ministère. On a vécu ça partout où on a essayé, même en régions éloignées comme la Gaspésie, le Bas-Saint-Laurent et dans le Nord, comme la Baie-James… »

C’est au début de l’année 2021 que, devant la détresse de plusieurs employés en lien avec la pénurie de personnel, Mme Lamothe a commencé ses propres démarches de recrutement à l’étranger. Neuf mois plus tard et après avoir investi 20 000 $, notamment en analyses de CV, en entrevues et en frais de consultant en immigration, cette ancienne infirmière a été en mesure de dresser une liste de travailleurs francophones « surqualifiés » avec de l’expérience à l’urgence et en pédiatrie, dont la formation allait être facilement reconnue par l’Ordre des infirmières et infirmiers du Québec (OIIQ). « Pour être membre de l’OIIQ, il faut faire un stage de 75 jours dans le réseau public et j’offrais même aux établissements de santé de le prendre sur mon bras », soutient Mme Lamothe. Son agence allait également s’occuper de l’accueil et de l’intégration des travailleurs, comme le logement et la première épicerie. « Je pouvais même signer un papier pour confirmer que ces personnes-là allaient rester dans le public. C’était gagnant-gagnant ! »

Alors que Radio-Canada a rapporté que le gouvernement Legault mène actuellement une opération sans précédent avec Recrutement santé Québec pour faire venir 4000 travailleurs de la santé hors du Québec — dont 3500 infirmières —, des agences privées s’étonnent que leurs offres de recrutement n’aient pas été retenues. « J’ai trouvé ça très dommage. Si le gouvernement avait pris nos services, on aurait déjà une soixantaine d’infirmières pratiquant en Abitibi, ça n’aurait coûté que quelques centaines de milliers de dollars et on aurait pu économiser plusieurs millions en location de personnel », a déclaré Marc Blais, président de l’Agence de placement et de développement internationale (APDI), qui a près de 2000 CV d’infirmiers et d’infirmières de l’Afrique subsaharienne dans sa base de données. « Il y a eu un manque total de vision là-dessus. »

En 2019, son entreprise, qui fait uniquement du recrutement, avait proposé un projet pilote en collaboration avec le Cégep et le Centre intégré de santé et services sociaux de l’Abitibi-Témiscamingue (CISSS-AT) pour offrir une formation de mise à niveau reconnue par l’OIIQ à quelque 400 des Africains de l’Ouest qui avaient été présélectionnés. La force de cette initiative était la promesse que les gens recrutés allaient vouloir s’installer durablement en région, puisqu’ils viennent eux-mêmes de l’extérieur des grands centres. « On a sollicité le ministère de la Santé pour avoir des fonds, et ça a été refusé. [Le gouvernement] préférait travailler à l’interne avec Recrutement santé Québec », a soutenu M. Blais, qui se sent comme s’il s’était fait un peu voler son idée. « Ce programme-là, au fond, c’est nous qui l’avions mis en place. »

Le président de l’APDI constate que les agences privées de placement ou de recrutement sont boudées par le gouvernement. « On dirait que le [ministère] n’est pas très à l’aise avec les agences privées. Lorsque les solutions viennent du privé, il ne les retient pas. On nous met tous dans le même bassin. »

Jackie Lamothe déplore aussi que les efforts de son agence semblent être mal perçus. « Le gouvernement a peur qu’on vole du personnel du réseau, mais ce n’est tellement pas ça ! » lance-t-elle. « C’est le contraire. On prend du sang neuf qu’on met dans le réseau. On évite le [recours au] TSO [temps supplémentaire obligatoire], qui force les infirmières épuisées à partir. »

Longs délais à l’OIIQ

Entreprises privées de personnel soignant du Québec (EPPSQ) dit recevoir une trentaine d’appels par jour de professionnels de la santé de la France et du Maghreb prêts à venir travailler dès maintenant au Québec. « Nous, on pourrait se porter garant, comme agence, de les faire travailler, après validation des acquis et d’un cours accéléré. Mais ce pont-là ne se fait pas », dit Hélène Gravel, la présidente de cette association. EPPSQ a d’ailleurs intenté une poursuite contre le gouvernement, qui veut limiter le recours aux agences privées. Selon elle, le nœud du problème ne se situe pas uniquement dans l’administration du réseau de la santé, mais surtout au sein de l’Ordre des infirmières et celui des infirmières auxiliaires.

« Même pour une personne qui vient de France, c’est très long avant qu’elle puisse venir et gagner sa vie. […] Les délais à l’OIIQ sont encore trop longs. Il va falloir qu’ils s’amenuisent », a-t-elle ajouté.

Selon les données fournies par l’OIIQ, il faut de deux à trois mois pour obtenir une réponse à une demande d’admission par équivalence d’un dossier une fois que celui-ci est complet. À cela s’ajoute un programme de formation de 10 à 14 mois que doivent normalement suivre l’ensemble des infirmières diplômées à l’étranger, sauf les Françaises, qui bénéficient d’une voie rapide en vertu d’une entente France-Québec. S’ajoutent aussi les délais d’obtention des permis d’étude et de travail auprès des autorités en immigration.

À l’heure actuelle, environ 90 dossiers sont en traitement, selon l’OIIQ, qui précise que, généralement, seulement 40 à 50 dossiers parviennent à être complets et sont présentés à son Comité d’admission.

Source: Les agences privées écartées du recrutement à l’étranger

France grants citizenship to 12,000 Covid frontline workers

Quicker than Canada (as of this week, only about 4,300 have applied out of 20,000 slots):

France has granted citizenship to more than 12,000 frontline workers whose jobs put them at risk during the Covid pandemic under a special fast-track scheme.

As well as speeding up the application process, which normally takes up to two years, the government also cut the residency requirement from five years to two.

“Frontline workers responded to the call of the nation, so it is right that the nation takes a step towards them,” said the citizenship minister, Marlène Schiappa. “The country pulled through thanks to them.

“I welcome our new compatriots to French nationality and thank them in the name of the republic. The country also thanks them.”

In September 2020, the interior ministry invited those who had “actively contributed” to fighting the Covid health crisis to apply for fast-track naturalisation. On Thursday, Schiappa said 16,381 had applied and 12,012 applications were approved.

Among them were health professionals, security and cleaning staff, those who looked after essential workers’ children, home help workers and refuse collectors, the minister announced.

John Spacey, a Briton, was one of those given fast-track nationality as a foreigner who had “proved their commitment to the republic” in the eyes of the ministry.

Spacey lives in the Creuse region in central France and works for an organisation that provides domestic care for elderly people. “It genuinely feels like a great honour to be offered citizenship,” he told the Local earlier this year.

“France has been very good to me since my arrival and has given me opportunities I could never have dreamed of before stepping off the Eurostar in 2016 – a home of my own, a wonderful relationship, a 20-year-old Peugeot 106, a 40-year-old Mobilette, the most satisfying job in the world and a very bright future.

“Soon, I’ll be able to vote, will regain my freedom of movement and will finally feel fully European once more, finally feel fully integrated into the nation I’ve already come to love like my own.”

Spacey said he also received a one-off bonus payment from the state “as a kind of merci for services rendered during the crisis … something for which I was very grateful and that I’d not expected, given I’d been paid for my work anyway”.

He added: “Then came another, far more unexpected, thank you – the chance to apply for French nationality six months earlier than would have been possible under the normal rules and to have the process fast-tracked. All for doing a job I love.”

In April 2020, French hospital staff and nursing home workers were awarded tax-free bonuses of between €1,000 and €1,500 as part of the government thank you for their work during the Covid-19 crisis.

In August 2020, France’s 320,000 home-care workers were given Covid-19 bonuses of up to €1,000.

Source: France grants citizenship to 12,000 Covid frontline workers

The Black Mortality Gap, and a Document Written in 1910

Important history:

Black Americans die at higher rates than white Americans at nearly every age.

In 2019, the most recent year with available mortality data, there were about 62,000 such earlier deaths — or one out of every five African American deaths.

The age group most affected by the inequality was infants. Black babies were more than twice as likely as white babies to die before their first birthday.

The overall mortality disparity has existed for centuries. Racism drives some of the key social determinants of health, like lower levels of income and generational wealth; less access to healthy food, water and public spaces; environmental damage; overpolicing and disproportionate incarceration; and the stresses of prolonged discrimination.

But the health care system also plays a part in this disparity.

Research shows Black Americans receive less and lower-quality care for conditions like cancer, heart problems, pneumonia, pain management, prenatal and maternal health, and overall preventive health. During the pandemic, this racial longevity gap seemed to grow again after narrowing in recent years.

Some clues to why health care is failing African Americans can be found in a document written over 100 years ago: the Flexner Report.

In the early 1900s, the U.S. medical field was in disarray. Churning students through short academic terms with inadequate clinical facilities, medical schools were flooding the field with unqualified doctors — and pocketing the tuition fees. Dangerous quacks and con artists flourished.

Physicians led by the American Medical Association (A.M.A.) were pushing for reform. Abraham Flexner, an educator, was chosen to perform a nationwide survey of the state of medical schools.

He did not like what he saw.

Published in 1910, the Flexner Report blasted the unregulated state of medical education, urging professional standards to produce a force of “fewer and better doctors.”

Flexner recommended raising students’ pre-medical entry requirements and academic terms. Medical schools should partner with hospitals, invest more in faculty and facilities, and adopt Northern city training models. States should bolster regulation. Specialties should expand. Medicine should be based on science.

Source: The Black Mortality Gap, and a Document Written in 1910

Why doctors want Canada to collect better data on Black maternal health

Need this for many groups:

A growing body of data about the heightened risks faced by Black women in the U.K. and U.S. during pregnancy has highlighted the failings of Canada’s colour-blind approach to health care, according to Black health professionals and patients.

Black women in the U.K. and U.S. are four times more likely to die in pregnancy or childbirth than white women, according to official data. A recent U.K. study published in The Lancet found that Black women’s risk of miscarriage is 40 per cent higher than white women’s. In Canada, that level of demographic tracking isn’t available.

“For our country, we don’t have that data. So it’s difficult to know exactly what we’re dealing with,” said Dr. Modupe Tunde-Byass, a Toronto obstetrician-gynecologist, and president of Black Physicians of Canada. “We can only extrapolate from other countries.”

Source: Why doctors want Canada to collect better data on Black maternal health

Report from Alberta Anti-Racism Advisory Council takes aim at justice system, education and health-care layoffs

Of note. Bit odd weighing in on healthcare outsourcing but legitimate to note the disproportionate  impact falls on women and visible minorities:

Mandatory anti-racism training for the province’s police, prosecutors and judges and more content addressing systemic racism in the K-12 curriculum are among recommendations proposed by the Alberta Anti-Racism Advisory Council in its long-awaited report.

Released Friday, it calls for an in-depth education on the impact of hate incidents for all Justice Ministry staff, and to see K-12 students learn about the historical roots of racism and its impact on the present-day.

Source: Report from Anti-Racism Advisory Council takes aim at justice system, education and health-care layoffs

The Pandemic Imperiled Non-English Speakers In A Hospital

Of note, both the findings and the measures the hospital took to address the problem:

In March, just weeks into the COVID-19 pandemic, the incident command center at Brigham and Women’s Hospital in Boston was scrambling to understand this deadly new disease. It appeared to be killing more black and brown patients than whites. For Latino patients, there was an additional warning sign — language.

Patients who didn’t speak much, if any, English had a 35% greater chance of death.

Clinicians who couldn’t communicate clearly with patients in the hospital’s COVID units noticed it was affecting outcomes.

“We had an inkling that language was going to be an issue early on,” says Dr. Karthik Sivashankar, the Brigham’s then medical director for quality, safety and equity. “We were getting safety reports saying language is a problem.”

Sivashankar dove into the records, isolating and layering the unique characteristics of each of the patients who died: their race, age, gender and whether they spoke English.

“That’s where we started to really discover some deeper, previously invisible inequities,” he says.

Inequities that weren’t about race alone.

Hospitals across the country are reporting higher hospitalizations and deaths for Black and Latino patients as compared to whites. Black and brown patients may be more susceptible because they are more likely to have a chronic illness that increases the risk of serious COVID. But when the Brigham team compared Black and brown patients to white patients with similar chronic illnesses, they found no difference in the risk of death from COVID.

But a difference did emerge for Latino patients who don’t speak English.

That sobering realization helped them home in on a specific health disparity, think about some possible solutions, and begin a commitment to change.

“That’s the future,” says Sivashankar.

Identifying the mortality risk is just the first step

But first, the Brigham had to unravel this latest example of a life threatening health disparity. It started outside the hospital, in lower-income communities within and just outside Boston, where the coronavirus spread quickly among many native Spanish speakers who live in close quarters with jobs they can’t do from home.

Some avoided coming to the hospital until they were very sick, because they didn’t trust the care in big hospitals or feared detection by immigration authorities. Nevertheless, just weeks into the pandemic, COVID patients who spoke little English began surging into Boston hospitals, including Brigham and Women’s.

” We were frankly not fully prepared for that surge,” says Sivashanker. “We have really amazing interpreter services, but they were starting to get overwhelmed.”

“In the beginning, we didn’t know how to act, we were panicking,” says Ana Maria Rios-Velez, a Spanish-language interpreter at the Brigham.

Rios-Velez remembers searching for words to translate this new disease and experience for patients. When called to a COVID patient’s room, interpreters were confused about whether they could go in, and how close they should get to a patient. Some interpreters say they felt disposable in the early days of the pandemic, when they weren’t given adequate personal protective equipment.

When she had PPE, Rios-Velez says she still struggled to gain a patient’s trust from behind a mask, face shield and gown. For safety, many interpreters were urged to work from home. But speaking to patients over the phone created new problems.

“It was extremely difficult, extremely difficult,” she says. “The patients were having breathing issues. They were coughing. Their voices were muffled.”

And Rios-Velez couldn’t look her patients in the eye to put them at ease and try to build a connection.

“It’s not only the voice, sometimes I need to see the lips, if smiling,” she says. “I want them to see the compassion in me.”

Adding interpreters and telemedicine tech

The Brigham responded by adding more interpreters and buying more iPads so that remote workers could see patients. The hospital purchased amplifiers to raise the volume of the patient’s voice above the beeps and machines humming in an ICU. The Mass General Brigham network is piloting the use of interpreters available via video in primary care offices. A study found lower use of telemedicine visits by Spanish-speaking patients as compared to white patients during the pandemic.

The Brigham’s goal is that every patient who needs an interpreter will get one. Sivashankar says that happens now for most patients who make the request. The bigger challenge, he says, is including an interpreter in the care of patients who may need the help but don’t ask for it.

In the midst of the first surge, interpreters also became translators for the hospital’s website, information kiosks, COVID safety signs and brochures.

“It was really tough. I got sick and had to take a week off,” saysYilu Ma, the Brigham’s director of interpreter services.

Mass General Brigham is now expanding a centralized translation service for the entire hospital network.

Seeing the inequities within the hospital workforce

Brigham and Women’s analytics team uncovered other disparities. Lower-paid employees were getting COVID more often than nurses and doctors. Sivashankar says there were dozens of small group meetings with medical assistants, transport workers, security staff and those in environmental services where he shared the higher positive test rates and encouraged everyone to get tested.

“We let them know they wouldn’t lose their jobs,” if they had to miss work, Sivashankar says. And he, along with managers, told these employees “that we realize you’re risking your life just like any other doctor of nurse is, every single day you come to work.”

Some employees complained of favoritism in the distribution of PPE, which the hospital investigated. To make sure all employees were receiving timely updates as pandemic guidance changed, the Brigham started translating all coronavirus messages into Spanish and other languages, and sending them via text, which people who are on the move all day are more likely to read. The Mass General Brigham system offered hardship grants of up to $1,000 for employees with added financial pressures, such as additional child care costs.

Angelina German, a hospital housekeeper with limited English, says she appreciates getting updates via text in Spanish, as well as in-person COVID briefings from her bosses.

“Now they’re more aware of us all,” German says through an interpreter, “making sure people are taking care of themselves. ”

Moving beyond the hospital walls to address disparities

The hospital also set up testing sites in some Boston neighborhoods with high coronavirus infection rates, including neighborhoods where many employees live and were getting infected. At least one of those sites now offers COVID vaccinations.

“No one has to be scheduled, you don’t need insurance, you just walk up and we can test you,” explained Dr. Christin Price during a visit to one of the testing sites last fall. It was located in the parking lot of Brookside Community Health Center, in Boston’s Jamaica Plain neighborhood.

Nancy Santiago left the testing site carrying a free 10-pound bag of fruits and vegetables, which she’ll share with her mother. Santiago said she’s grateful for the help.

“I had to leave my job because of [lack of] daycare, and it’s been pretty tough,” she said, “but you know, we gotta keep staying strong and hopefully this is over sooner rather than later.”

The Brigham recently opened a similar indoor operation at the Strand Theater in Dorchester. Everyone who comes for a coronavirus test is asked if they have enough to eat, if they can afford their medications, whether they need housing assistance and if they’re registered to vote.

The bags of free food, and the referrals to social support, are evidence of a debate playing out about the role hospitals will play, outside their walls, to curb health disparities rooted in racism.

“Poverty and social determinants of health needs are not going away any time soon, and so if there’s a way to continue to serve the communities, I think that would be tremendous,” says Price, who helped organize the Brigham’s community testing program.

Mass General Brigham leaders say they’ll take what they’ve learned dissecting disparities during the COVID-19 pandemic, and expand the remedies across the hospital network.

“Many of the issues that were identified during the COVID equity response are unfortunately pretty universal issues that we need to address, if we’re going to be an anti-racist organization and one that promotes equity strongly as one of our core strategies,” says Tom Sequist, chief of patient experience and equity for Mass General Brigham.

The Brigham’s work on health disparities comes, in part, out of a collaboration with the Institute for Healthcare Improvement (IHI), and included a focus on gathering, analyzing and tracking data.

“There’s a lot of defensive routines into which we slip as clinicians, that the data can help cut through and reveal that there are some biases in your own practice,” explains IHI President and CEO Dr. Kedar Mate.

“If we don’t name and start to talk about racism and how we intend to dismantle it or undo it,” Mate adds, “we’ll continue to place Band-Aids on the problem and not actually tackle the underlying causes.”

But has the Brigham’s work lowered the risk of death from COVID for Spanish-speaking patients? The hospital hasn’t updated the analysis yet, and even when it does, determining whether (or how) the interventions worked will be hard to prove, Sivashankar says.

“It’s never going to be as simple as ‘We just didn’t give them enough iPads or translators and that was the only problem,’ and now that we’ve given that, we’ve shown that the mortality difference has gone away,” said Sivashankar.

But Sivashankar says more interpreters, iPads, and better messaging to non-English speaking employees, plus all the other steps the Brigham has taken during COVID have improved both the patient and employee experience. That, he says, counts as a success, while work on the next layer of discrimination continues.

Source: The Pandemic Imperiled Non-English Speakers In A Hospital

Nili Kaplan-Myrth: Vaccination nation – or, a word with the prime minister

From our family doctor:
As a family doctor, I never dreamed I’d speak to the prime minister about a life and death issue for Canadians. But this afternoon (Thursday), joined by my RN colleague Amie Varley, I am moderating a panel of health-care workers and community advocates across the country. We’ve been called “front-line heroes” throughout the COVID-19 pandemic, but our voices are often excluded from decision-making tables. I put together this panel to have a national conversation about COVID-19 vaccination strategies. Many of the issues that keep me up at night are similar to the issues that keep my colleagues, patients, friends and family awake.
What it is that we are all worrying about? Geographic disparities. My friend is a doctor in Kenora. She told me that in a 700-km corridor, from Winnipeg to Thunder Bay, none of the doctors and nurses in intensive care units (ICUs) and emergency departments, staff in LTC, health workers in any setting – has received the vaccine. She told me how fragile their hospital is in a remote area, where their entire system could collapse if anyone on their team gets sick.
We’re worried about systemic inequalities in our health-care system. First Nations, Inuit and Metis patients, and racialized Canadians, occupy a disproportionate number of the beds in our ICUs, and make up a disproportionate number of deaths from COVID-19. People who live in poverty, or are homeless, are far less likely to access the vaccine than affluent people are. Registration for vaccination may be entirely online, reliant on individuals to act as if they are buying tickets to a rock concert. How will my patients who are in their 80s, or my patients who do not own computers, who have already struggled to book COVID-19 tests, ensure that they get their shots?
There are so many issues of equity and diversity. In the process of putting together our panel, I was approached by people who wanted to know if we would talk about the vulnerability of seniors who live in the community, people with disabilities, caregivers outside of institutional settings. I spoke with people who were concerned we’d forget about Canadians who live or work in shelters, in jails. I was also approached by women’s health experts, discussing the need for national standards to support pregnant and lactating women as recipients of the COVID-19 vaccine.
I couldn’t include every advocate or every subject in our conversation with the prime minister, let alone every province and territory. How does one cover issues of racism, ableism, ageism, sexism, language barriers, socioeconomic barriers, discrimination faced by LGBTQ patients, and all the ways in which our health care fundamentally disadvantages members of our society, all in a one-hour conversation about access to COVID-19 vaccine across the country?
I also wanted to address the idea that we are “in this together,” when in fact we tend to work in silos. Our panel brings us together: Nurses, doctors, midwives, pharmacists, personal support workers, health policy researchers, patient advocates, essential caregivers. We end the panel by talking about how we can collaborate to get the COVID-19 vaccine into the arms of Canadians.
While I am still pinching myself, amazed that this is possible – I’ve told my children to speak up for what matters, but who’d have thought I’d speak directly to the prime minister? – our panel is an example of the diverse voices that should be at every decision-making table. This is only the beginning of a collaborative conversation that I hope will continue.
Dr. Nili Kaplan-Myrth, MD, CCFP, PhD, is a family doctor and anthropologist who writes about health policy and politics. She also co-hosts the podcast Rx:Advocacy.ca

Source: Nili Kaplan-Myrth: Vaccination nation – or, a word with the prime minister