Data sharing should not be an afterthought in digital health innovation

Agree that data sharing is intrinsic to healthcare innovation, not just digital.

In Ontario, Epic provides a measure of integration for providers and patients, which I have found useful for my personal health data (and I like the fact that I see my test results sometimes earlier than my doctors!).

But surprising no mention of CIHI and its current role in compiling healthcare data, which I have used to analyse trends in birth tourism:

Within Canada and abroad, many health-care organizations and health authorities struggle to share data effectively with biomedical researchers. The pandemic has accentuated and brought more attention to the need for a better data-sharing ecosystem in biomedical sciences to enable research and innovation.

The siloed and often entirely disconnected data systems suffer from a lack of an interoperable infrastructure and a common policy framework for big data-sharing. These are required not only for rapidly responding to emergency situations such as a global pandemic, but also for addressing inefficiencies in hospitals, clinics and public health organizations. Ultimately this may result in delays in providing critical care and formulating public health interventions. An integrated framework could improve collaboration among practitioners and researchers across disciplines and yield improvements and innovations.

Significant investments and efforts are currently underway in Canada by hospitals and health authorities to modernize health data management. This includes the adoption of electronic health record systems (EHRs) and cloud computing infrastructure. However, these large-scale investments do not consider data-sharing needs to maximize secondary use of health data by research communities.

For example, the adoption of Cerner, a health information technology provider, as an EHR system in British Columbia represents the single largest investment in the history of B.C. health care. It promises improved data-sharing, and yet the framework for data-sharing is non-existent.

Operationalization of a data-sharing system is complex and costly, and runs the risk of being both too little and too much of a regulatory burden. Much can be learned from both the SARS and COVID-19 pandemics in formulating the next steps. For example, a national committee was formed after SARS to propose the creation of a centralized database to share public health data (the National Advisory Committee on SARS). A more recent example is the Pan-Canadian Health Data Strategy, which aims to support the effective creation, exchange and use of critical health data for the benefit of Canadians.

New possibilities to help heath care providers and users safely share information are providing innovative solutions that deal with a growing body of data while protecting privacy. The decrease in storage costs, an increase of inexpensive processing power and the advance of platforms as a service (PaaS) via cloud computing democratize and commoditize analytics in health care. Privacy-enhancing technologies (PETs), backed by national statistical organizations, signal new possibilities to help providers and users safely share information.

Researchers as major data consumers recognize the importance of sound management practices. While these practices focus on the responsibilities of research institutions, they also promote sharing of biomedical data. Two examples are the National Institutes of Health’s data-sharing policy and Canada’s tri-agency research data management policy. These policies are based on an understanding of what’s needed in infrastructure modernization, in tandem with what’s needed for robust data-sharing and good management policies.

What about hospitals and health authorities as data producers? Who is forging a new structure and policy to direct them across Canada to increase data-sharing capacity?

Public health organizations operate with a heavy burden to comply with a multitude of regulations that affect data-sharing and management. This challenge is compounded by uncertainty surrounding risk quantification for open data-sharing and community-based computing. This uncertainty often translates into the perception of high risk where risk tolerance is low by necessity. As a result, there is a barrier to investing in new infrastructure and, just as importantly, investing in cultural change in management during decision-making processes related to budgeting.

Better understanding of the system is needed before taking the next steps, particularly when looking at outdated infrastructure governed by policies that never anticipated innovation and weren’t designed to accommodate rapid software deployment. Examining and assessing the current state of the Canadian health-care IT infrastructure should include an evaluation of the benefits of broad data-sharing to help foster momentum for biomedical advances. By looking at the IT infrastructure as it stands now, we can see how inaction costs society time, money and patient health.

One approach is to create a federated system. What this means is a common system capable of federated data-sharing and query processing. Federated data-sharing is defined as a series of decentralized, interconnected systems that allow data to be queried or analyzed by trusted participants. These systems require compliance with regulations, including legal compliance; system security and data protection by design; records of processing activities; encryption; managing data subject consent; managing personal data deletion; managing personal data portability; and security of personal data.

Because much of Canada’s IT infrastructure for health data management is obsolete, there needs to be significant investment. As well, the underlying infrastructure needs to be rebuilt to communicate externally with digital applications through a security framework for continuous authentication and authorization.

Whatever system is used must be capable of ensuring patient privacy. For example, individuals might be identified by reverse engineering data sets that are cross-referenced. The goal is to significantly minimize ambiguity in assessing the associated risk to allow compliance with privacy protections in law and practice. Widely used frameworks exist that address these issues.

The market is providing available technologies and cost-effective methods that can be used to enable large-scale data-sharing that meet privacy protection criteria. What is needed is the collective will to proceed, to upgrade obsolete data infrastructure and address policy barriers. Initiatives and applications in other jurisdictions or settings face similar challenges, but our research and development can be accelerated to help enhance data sharing and improve health outcomes.

Source: Data sharing should not be an afterthought in digital health innovation

Patient satisfaction surveys fail to track how well USA hospitals treat people of color

Of interest:

Each day, thousands of patients get a call or letter after being discharged from U.S. hospitals. How did their stay go? How clean and quiet was the room? How often did nurses and doctors treat them with courtesy and respect?

The questions focus on what might be termed the standard customer satisfaction aspects of a medical stay, as hospitals increasingly view patients as consumers who can take their business elsewhere.

But other crucial questions are absent from these ubiquitous surveys, whose results influence how much hospitals get paid by insurers: They do not poll patients on whether they’ve experienced discrimination during their treatment, a common complaint of diverse patient populations.

Likewise, they fail to ask diverse groups of patients whether they’ve received culturally competent care.

And some researchers say that’s a major oversight.

Kevin Nguyen, a health services researcher at Brown University School of Public Health, who parsed data collected from the government-mandated national surveys in new ways, found that — underneath the surface — they spoke to racial and ethnic inequities in care.

Digging deep, Nguyen studied whether patients in one Medicaid managed-care plan from ethnic minority groups received the same care as their white peers. He examined four areas: access to needed care, access to a personal doctor, timely access to a checkup or routine care, and timely access to specialty care.

“This was pretty universal across races. So Black beneficiaries; Asian American, Native Hawaiian, and Pacific Islander beneficiaries; and Hispanic or Latino or Latinx/Latine beneficiaries reported worse experiences across the four measures,” he said.

Nguyen said that the surveys commonly used by hospitals (called Consumer Assessment of Healthcare Providers and Systems, or CAHPS) could be far more useful if they were able to go one layer deeper — for example, asking why it was more difficult to get timely care, or why they don’t have a personal doctor.

It would also be more helpful if CMS publicly posted not just the aggregate patient experience scores, but also showed how those scores varied by respondents’ race, ethnicity, and preferred language.

Such data can help discover whether a hospital or health insurance plan is meeting the needs of all versus only some patients. Nguyen did not study responses of LGBTQ+ individuals or, for example, whether people received worse care because they were obese.

Hospital surveys — and how to game them — has become big business

The health care provider surveys are required by the federal government for many health care facilities, and the hospital version of it is required for most acute care hospitals. Low scores can induce financial penalties, and hospitals reap financial rewards for improving scores or exceeding those of their peers.

The CAHPS Hospital Survey, known as HCAHPS, has been around for more than 15 years. The results are publicly reported by the Centers for Medicare & Medicaid Services to give patients a way to compare hospitals, and to give hospitals incentive to improve care and services. Patient experience is just one thing the federal government publicly measures; readmissions and deaths from conditions including heart attacks and treatable surgery complications are among the others.

Dr. Meena Seshamani, director of the Center for Medicare, said that patients in the U.S. seem to be growing more satisfied with their care:

“We have seen significant improvements in the HCAHPS scores over time,” she said in a written statement, noting, for example, that the percentage of patients nationally who said their nurses “always” communicated well rose from 74% in 2009 to 81% in 2020.

But for as long as these surveys have been around, doubts about what they really capture have persisted. Patient experience surveys have become big business, with companies marketing methods to boost scores. Researchers have questioned whetherthe emphasis on patient satisfaction — and the financial carrots and sticks tied to them — have led to better care. And they have long suspected institutions can “teach to the test” by training staff to cue patients to respond in a certain way.

National studies have found the link between patient satisfaction and health outcomes is tenuous at best. Some of the more critical research has concluded that “good ratings depend more on manipulable patient perceptions than on good medicine,” citing evidence that health professionals were motivated to respond to patients’ requests rather than prioritize what was best from a care standpoint, when they were in conflict.

Hospitals have also scripted how nurses should speak to patients to boost their satisfaction scores. For example, some were instructed to cue patients to say their room was quiet by making sure to say out loud, “I am closing the door and turning out the lights to keep the hospital quiet at night.”

A new push to survey hospitals about discrimination

About a decade ago, Robert Weech-Maldonado, a health services researcher at the University of Alabama-Birmingham, helped develop a new module to add to the HCAHPS survey “dealing with things like experiences with discrimination, issues of trust.” Specifically, it asked patients how often they’d been treated unfairly due to characteristics like race or ethnicity, the type of health plan they had (or if they lacked insurance), or how well they spoke English.

It also asked patients if they felt they could trust the provider with their medical care. The goal, he said, was for that data to be publicly reported, so patients could use it.

Some of the questions made it into an optional bit of the HCAHPS survey — including questions on how often staffers were condescending or rude, and how often patients felt the staff cared about them as a person — but CMS doesn’t track how many hospitals use them, or how they use the results. And though HCAHPS asks respondents about their race, ethnicity and language spoken at home, CMS does not post that data on its public patient website, nor does it show how patients of various identities responded compared to others.

Without wider use of explicit questions about discrimination, Dr. Jose Figueroa, an assistant professor of health policy and management at the Harvard School of Public Health, doubts HCAHPS data alone would “tell you whether or not you have a racist system” — especially given the surveys’ slumping response rates.

One exciting development, he said, lies with the emerging ability to analyze open-ended (rather than multiple-choice) responses through what’s called natural language processing, which uses artificial intelligence to analyze the sentiments people express in written or spoken statements as an addendum to the multiple-choice surveys.

One study analyzing hospital reviews on Yelp identified characteristics patients think are important but aren’t captured by HCAHPS questions — like how caring and comforting staff members were, and the billing experience. And a study out this yearin the journal Health Affairs used the method to discover that providers at one medical center were much more likely to use negative words when describing Black patients compared with their white counterparts.

“It’s simple, but if used in the right way can really help health systems and hospitals figure out whether they need to work on issues of racism within them,” said Figueroa.

Press Ganey Associates, a company that a large number of U.S. hospitals pay to administer these surveys, is also exploring this idea. Dr. Tejal Gandhi leads a projectthere that, among other things, aims to use artificial intelligence to probe patients’ comments for signs of inequities.

“It’s still pretty early days,” Gandhi said, adding, “With what’s gone on with the pandemic, and with social justice issues, and all those things over the last couple of years, there’s just been a much greater interest in this topic area.”

Direct outreach to improve cultural competence

Some hospitals, though, have taken the tried-and-true route to understanding how to better meet patients’ needs: talking to them.

Dr. Monica Federico, a pediatric pulmonologist at the University of Colorado School of Medicine and Children’s Hospital Colorado in Denver, started an asthma program at the hospital several years ago. About a fifth of its appointments proved no-shows. The team needed something more granular than patient satisfaction data to understand why.

“We identified patients who had been in the hospital for asthma, and we called them, and we asked them, you know, ‘Hey, you have an appointment in the asthma clinic coming up. Are there any barriers to you being able to come?’ And we tried to understand what those were,” said Federico.

At the time, she was one of the only Spanish-speaking providers in an area where pediatric asthma disproportionately affects Latino residents. (Patients also cited problems with transportation and inconvenient clinic hours.)

After making several changes, including extending the clinic’s hours into the evening, the no-show appointment rate nearly halved.

Patient satisfaction surveys are embedded in American health care culture and are likely here to stay. But CMS is now making tentative efforts in surveys to address the issues that were previously overlooked: As of this summer, it is testing a question for a subset of patients 65 and older that would explicitly ask if anyone from a clinic, emergency room, or doctor’s office treated them “in an unfair or insensitive way” because of characteristics including race, ethnicity, culture, or sexual orientation.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. It is an editorially independent operating program of KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

Source: Patient satisfaction surveys fail to track how well hospitals treat people of color

Ontario gives OK for nursing college to expedite international nurse registration


Ontario’s minister of health has told the province’s nursing college to go ahead with regulatory changes that could get thousands more internationally trained nurses into practice more quickly.

Sylvia Jones directed the College of Nurses of Ontario last month to develop plans to more quickly register internationally educated professionals as staffing shortages have led to temporary emergency department closures across the province.

Among the college’s proposals was allowing internationally trained nurses to be temporarily registered while they go through the process of full registration, such as completing education and an exam.

It also proposed to make it easier for about 5,300 non-practising nurses living in Ontario to return to the workforce, if they want to. Current rules say a nurse must have practised within the last three years to be reinstated, but that could be removed.

Jones has now told the college to draft those amendments to regulations right away.

“It is my expectation that should these amendments be approved by the government, that the college will immediately begin registering both (internationally educated nurses) and other applicants who will benefit from these changes,” she wrote to them in a letter obtained by The Canadian Press.

The college has said the changes could potentially help the 5,970 active international applicants currently living in Ontario, but Jones has asked the regulator specifically how many nurses it expects will benefit.

The nursing college had also said that with temporary registrations, it could change rules to only revoke a temporary certificate after two failed exam attempts, instead of the one attempt nurses are currently allowed. On that measure, the ministry said it will rely on the college’s expertise about what exactly should be included in the regulatory amendments it is now drafting.

Temporarily registered nurses have to be monitored by a registered practical nurse, a registered nurse or a nurse practitioner.

Jones has also given approval to the College of Physicians and Surgeons of Ontario for it to create a temporary, three-month registration for physicians licensed in other provinces.

That college had also highlighted for the minister a need for practice ready assessments, which would allow internationally educated physicians to be rapidly assessed over a 12-week period of supervision and direct observation. Such programs are already used in seven other provinces and are designed to deploy physicians to underserved communities and provide a path to licensing, the college wrote to the minister.

“CPSO urges government to take immediate steps to implement a PRA program for Ontario,” it wrote.

“With government funding and co-ordination among key system partners, a program could be implemented immediately and begin injecting a new supply of (internationally educated physicians) into the system as early as spring 2023 and onwards.”

Jones responded that the ministry is “looking carefully at the concept.”

Source: Ontario gives OK for nursing college to expedite international nurse registration

Hospital staff shortages: Immigration backlog leaves professionals on sidelines

Of note, appears that the bottleneck more immigration-related than credential recognition delays:

As hospitals across the country struggle under the weight of major staffing shortages, an immigration backlog described by lawyers as the worst they have ever seen is leaving qualified health professionals sitting on the sidelines.

In Februrary 2021, Sharlene Ullani applied for a permanent resident card after years spent working in Canada as a caregiver for children. Eighteen months later, the internationally trained nurse with more than seven years experience hasn’t heard anything from Immigration Canada about her application status.

Online, the government estimates the processing time for new permanent residence cards is 2.6 months, or 81 days, as of Aug. 2.

“I’ve been sending emails two times a month and the answer is always the same: ‘You have to wait, thank you for your patience. We have this pandemic’,” she told CTV National News.

Ullani currently holds a temporary work permit, but it does not allow her to switch jobs — even from a caregiver for children to a caregiver for adults — without losing status. In the months since she filled an application for permanent residency, Ullani has written exams and completed the paperwork necessary to get her foreign credentials translated into a valid licence to work in Ontario as a registered practical nurse.

“It is heartbreaking to see nurses working so hard and we are here, willing to help,” she said. “We are willing to help, but we cannot do so because of our status.”

The Registered Nurses’ Association of Ontario said there are roughly 26,000 nurses “ready and waiting” to work in Ontario, 14,000 of those are registered nurses. CEO Doris Grinspun says the great majority of those people are waiting for their international qualifications to get approved by the college, but thousands have already passed their exams and are waiting for their immigration status to change so they can work.

“The big impact of the backlog for patients is that they are either being short changed in the quality of care or they are not getting care all together,” she said. “If you look at home care, they are likely not getting care all together. If you look at ICU or ER that are closing down or shrinking, even in an emergency, it is desperation.”

Recently, Grinspun worked with the federal government to approve the immigration applications of 26 nurses. Given the health care staffing crisis across the country, Grinspun said the government should prioritize applications filed on behalf of applicants with backgrounds in health care, especially nurses.

“Having internationally trained nurses, RPN … able to join the workforce when they are ready to work in Ontario, and especially those who have already passed their exams and are just waiting on work permits by the feds, move them on. Move them on because nurses and patients need them desperately,” she said.

Speaking at a press conference in Ottawa on Thursday, NDP leader Jagmeet SIngh echoed Grinspun’s calls, saying he has called on Ottawa to implement a fast track immigration system for qualified health-care workers. Singh said he does not know why Ottawa has not yet followed through.

“There is no excuse for this,” Singh said. “I can’t understand why the government is not willing to do this… We need to respond in an urgent way because these are folks who can work here and want to work here.”

In June, the immigration department said more than 2.4 million applications were in the backlog, up from 2.1 million in June. CTV News reached out to the department multiple times for updated figures, but did not hear back at the time of publishing. The department said it usually takes five business days to process and gather statistical data.

Toronto Immigration lawyer Chantal Desloges attributes the backlog to a “perfect storm” of factors related to the early days of the COVID-19 pandemic, when many embassies and consulates closed and immigration staff started working from home.

“When everyone else was doing business online, it wasn’t that easy for the government to pivot,” she said. Desloges added that when offices were closed, applications were still being submitted, but nobody was there to process them.

“All of these things happening at the same time just made a toxic soup of circumstances.”

To speed up the process, Desloges said immigration staff who can’t do 100 per cent of their job from home should be ordered back into the office. She also suggests the government could expedite the approval process by reducing the number and frequency of applicant interviews.

“It is really hard to predict how long it is going to take to sort this mess out, if ever,” she said.

On Tuesday, Immigration, Refugees and Citizenship Canada (IRCC) introduced new measures to speed up the processing of applications for foreign nationals with expired or expiring post-graduation work permits, and for temporary resident to permanent residence pathway applicants. Under the change, individuals in either of those cases will have their current work permits extended while their applications are being processed.

Director of Policy at Kareem El-Assal applauded the change, but said it should have been implemented back in 2020.

“This is a solution that should have been adopted since the start of the pandemic and would have saved applicants a lot of heartache and would have actually saved the canadian government a lot of time as well,” he said.

As delays drag on, applicants like post doctoral researcher Julie Ottoy are left in llimbo, unable to leave the country or attend international conferences for work.

“It is very frustrating,” she said. “It’s been close to five months now not hearing from IRCC and interestingly, last year I submitted this application around the same time and the exact same renewal was approved in two weeks.”

Source: Hospital staff shortages: Immigration backlog leaves professionals on sidelines

Health care researchers need to ask, ‘Who is Black?’ University of Ottawa professor says

Why not just use Statistics Canada definitions, both visible minority and ethnic ancestry? Are the various terminologies used really that different or significant?

The real challenge lies more with respect to integrating this data with health card information, to allow this king of analysis and treatment, which of course will likely raise privacy issues.

For immigrants, I understand there is work underway to integrate immigration and health data but anonymized to allow for this kind of analysis in relation to health outcomes, information that could then hopefully be available through CIHI:

The inability to find a common term to describe Black people in Canadian health research can perpetuate inequities, a University of Ottawa professor says.

We need precise, accurate language because research informs public health policies, training for health-care workers and culturally appropriate and antiracist health-care practices, says Dr. Jude Mary Cénat, an associate professor of psychology and the director of University of Ottawa’s Interdisciplinary Centre for Black Health, Canada’s first academic research centre dedicated to studying the biological, social and cultural determinants of health for Black communities.

In Canadian health-care research, the definition of “who is Black” can vary widely. Terms such as “African-Canadian,” “Caribbean” and “African” are inconsistent and make it difficult to compare studies, he says.

The terms may include people who do not identify as Black, such as those who are from North Africa, and people from Caribbean nations including Cuba, the Dominican Republic and Puerto Rico, who consider themselves to be Latin American.

From a health research point of view, that can be a problem, Cénat says. One example: A 2019 review of breast and cervical cancer among “Black Canadian” women included 23 studies, but only seven had unambiguously Black participants. Some studies considered “Africa” as a single block and included participants from North Africa, who may self-identify as Arab.

“Most people from Africa are Black. But you can’t assume they are Black,” Cénat says. “You can’t say Elon Musk (who was born in South Africa) is Black.”

Meanwhile, studies rarely differentiate between Black people whose ancestors have lived in Canada for centuries and those who are recent immigrants, he says. The 2016 census found that the 10th most commonly listed country of origin for people in Canada self-identifying as Black was the United States.

Getting a more precise answer may be as simple as asking people “What is your skin colour?” says Cénat, whose commentary was published this week in the Canadian Medical Association Journal.

Researchers have to ask multiple questions, but the first one is how the subject identifies themselves, he says.

Cénat suggests asking research subjects the basic question: What is your skin colour? From there, it can lead to unraveling other questions about origins and ancestry. It’s also important to give research participants the opportunity to give more than one answer so that multiracial people can self-identify.

Asking questions related to race, ethnicity and region of origin may make some people uncomfortable. “We avoid that question. We ask people about their origin, not their skin colour,” Cénat says.

But health researchers can preface their questions by explaining why the questions are being asked and saying that the answers may help to improve health care for Black people in Canada.

“Researchers don’t have to be afraid of it,” he says.

If Black health research continues to be based on data that are unclear or inaccurate, there’s a risk that policies and programs will not meet the real needs of Black communities, Cénat warns.

Asking the right questions can also tease out more nuanced answers. For example, while the prevalence of diabetes is higher in Black communities than in the general population, some Black communities in Canada may be at more or less risk than others.

Cénat points out that, in Ottawa, racial minorities represent more than 30 per cent of the population.

“We need this because our population is a diverse population. We need to know more about the risk factors and the protective factors,” says Cénat, who studies the role that cultural factors play in vulnerability, trauma and resilience.

“We need to work with racial data that is precise. We need to say 10, 20, 30 years in the future that we have done something for these communities.”

Source: Health care researchers need to ask, ‘Who is Black?’ University of Ottawa professor says

Lost in translation: Patients more likely to die, have serious outcomes when their physicians don’t speak their preferred language

Serious study and implications. During my experience as a cancer patient, I often reflected on how hard it must be for patients with weaker language skills, education and income:

Patients treated by physicians who speak their own language are healthier and less likely to die while in hospital, according to a new study led by Ottawa researchers.

The study, published in the Canadian Medical Association Journal, showed significant differences in outcomes among frail, older patients who were treated by a physician in their own language, compared to those who were not.

Francophones treated by a French-speaking physician had a 24 per cent lower chance of death than those who received care from a non-French-speaking doctor, according to the study. They also had shorter hospital stays and had a 36 per cent lower chance of adverse events, such as falls, while in hospital.

For patients whose first language was neither English nor French, known as allophones, the impact was stark. This group had a 54 per cent lower chance of death when treated by a physician in their own language and a 74 per cent lower chance of hospital-related harms, according to the research.

But fewer than two per cent of allophones and fewer than half of the Francophones in the study received physician care in their own language.

Co-author Dr. Peter Tanuseputro, a physician-scientist at The Ottawa Hospital, Institute du Savior Montfort, Bruyere Research Institute and The Ottawa Hospital, called the findings staggering.

“It’s clearly easier to convey important information about your health in your primary language. Regardless, the more than doubling in odds of serious harms, including death, for patients receiving care in a different language is eye-opening.”

Tanuseputro said the research underscores why it is important for hospitals to pay attention to the language patients speak as well as the languages physicians and other health workers speak.

The findings are likely to resonate in Ottawa and Eastern Ontario, where the Franco-Ontarian community rallied to save Montfort hospital after the Ontario government announced plans to close it in 1997. The battle, won after five years of political activism and legal fights, galvanized the community. Today, Montfort is a Francophone university health institution that provides care in both languages and has a research institute.

Still, Tanuseputro noted that the majority of Franco-Ontarians studied did not get health services in French.

The study’s lead author, Emily Seale, a medical student at the University of Ottawa and Institut du Savoir Montfort, said more must be done to make sure patients are heard and understood by referring them to physicians who speak the same language or by using interpreter services.

“This is not only good patient-centred care, but our research shows that there are grave health consequences when it doesn’t happen.”

Dr. Sharon Johnston, scientific director and associate VP research at the Institut du Savoir Montfort said the study is important because: “(it) helps us quantify the risk of greater harm faced by patients who cannot receive medical care in their preferred language. Understanding and addressing this issue, particularly for our francophone community in Eastern Ottawa and Ontario, is a key part of the mission of Hôpital Montfort and l’Institut du Savoir Montfort.”

The researchers relied partly on data from home care services, which keeps track of patients’ first languages.

They studied more than 189,000 adult home care recipients who had been admitted to hospital between April 2010 and March 2018. They compared patients who received care from a physician in their primary language and those who received care in a different language.

Most of the home care recipients in the study spoke English. Thirteen per cent spoke French and 2.7 per cent spoke another language.

Just over half of the physicians in the study spoke only English and the remainder were multilingual. While 44 per cent of Francophones received care primarily from French-speaking physicians, only 1.6 per cent of allophones received most of their care from physicians who spoke their primary language or one they could understand.

Tanuseputro said, in his own experience, making attempts to find a physician who can provide care in a patient’s language, or translation services, is not always a priority in a busy hospital.

“I am guilty of this too. What our study shows is that there are risks and consequences if you don’t do that.”

Among other suggestions, Tanuseputro said teams of physicians should consider a patient’s language and find someone better able to communicate with the patient. And translation services should be used, even if it takes time.

He also said hospitals should assess patients to understand how well they understand English. If they can’t, hospitals should have interpretive services or multi-lingual family available.

While the study looked at home care patients who were in hospital between 2010 and 2018, Tanuseputro said the situation may well have worsened during periods of the pandemic when family members were generally kept out of the hospital and unable to help interpret.

The study can be found at:

Source: Lost in translation: Patients more likely to die, have serious outcomes when their physicians don’t speak their preferred language

Delaware is shrinking racial gaps in cancer death. Its secret? Patient navigators

Of interest:

Sussex County, in the heart of southern Delaware’s poultry-farm country, is home to many people like Michelaine Estimable, a 62-year-old native of Haiti who came to work on the factory lines of a chicken-processing plant.

But Estimable hasn’t worked in two years, because of a leg injury that made it impossible for her to drive. Now, she relies on family members she lives with to get rides to medical appointments — one of the logistical headaches that’s kept her from scheduling her mammogram for the past year.

Luckily for her, she’s getting some help this year accessing preventative care from the state of Delaware. At the clinic where she gets primary care, she meets with Margarette Osias, a patient navigator for the Delaware Breast Cancer Coalition, who sets up shop here every Tuesday, hoping to find people in the community due for mammograms or other cancer screenings.

Osias schedules exams for patients, sends them reminders, and arranges rides for them to get there. A bilingual Haitian Creole speaker herself, Osias also deals with insurance — or even goes with patients to appointments to serve as a translator.

Whatever obstacles the patient faces, “I am basically the connection between that individual and receiving that care,” Osias says.

Patient navigators like Osias play a critical role in how the state of Delaware has reduced its cancer death rates, and narrowed — even eliminated — racial disparities in some forms of cancer. Both are high priorities for the Biden administration, which last month relaunched the Cancer Moonshot initiative, pledging to cut cancer deaths in half in 25 years and address persistent disparities in screening and treatment among people of color. Nationally, cancer kills Black people at higher rates than other groups.

Delaware’s approach to cancer care stands out in the U.S. Two decades ago, the state had one of the highest cancer death rates in the country, so it used funds from the 1998 tobacco settlement to set up universal cancer screening and treatment for its residents. Its Screening for Life program will pay for all cancer screenings and, if cancer is found, will also cover up to two years of treatment — even for residents who are undocumented, have no insurance, or earn up to 6.5 times the federal poverty rate.

Now, that program is a model for addressing racial inequity in health care.

But access to screening and treatment can only help if residents like Estimable, who’s lost a sister and a cousin to cancer, know about it — which is where patient navigators like Osias come in.

Osias schedules exams for patients, sends them reminders, and arranges rides for them to get there. She also helps patients with insurance and translates for them at medical appointments.

Every five years, the state identifies zip codes where screening rates run lowest. Navigators then fan out across grocery stores and laundromats in those communities, dropping flyers, setting up booths, and meeting with religious leaders. They arrange mobile screening vans to factories and other workplaces during work hours.

The process is neither quick, nor easy; it takes time to be seen and develop a rapport with people who have a distant or skeptical view of the medical system, says Mary Jo Vasquez, another patient navigator.

People will often approach only after seeing her multiple times, at their church, or where they shop. “They need to trust you,” she says. “They have to learn that we’re there for them, that we want to help them and that we’re not going to abandon them.”

Having patient navigators on the front line is essential, says family nurse practitioner Nadya Julien.

Julien opened Tabitha Medical Care three years ago, and started working with navigators like Osias. The clinic serves mostly her fellow Haitians, as well as some Latino immigrants. She says many are illiterate and didn’t grow up with preventative medicine back home, which puts them at especially high risk of getting late-stage cancers.

The role of navigators isn’t just logistical, she says, they also reduce fears and help people feel supported through a scary and unfamiliar journey, whether it’s screening or treatment.

“When you have the navigator that speak the language that’s can schedule the appointment, that can go to the house and pick them up and also be there with them to translate it gives comfort,” Julien says.

Delaware’s progress against cancer inequities has been slow and steady, and not without its challenges. The state’s overall cancer death rate has gradually fallen from the 2nd highest among states in the 1990s to the 15th highest. Black men’s improvements stand out: From the period of 2003-2007 to that of 2013-2017, the death rate from all cancers declined 26% for non-Hispanic Black men in Delaware, compared to a 15% decline for white men.

The success varies by cancer. The state’s colorectal cancer mortality rates declined 37% among Black men in that time, and compared to 20% for white men. On the other hand, death from breast cancer only decreased by 3% among Black women compared to 15% for white women in that same period.

And a new challenge emerged in the pandemic: screening rates dropped off, temporarily hampering outreach efforts, so — like many other places — the state is now focusing on making up for lost ground.

But solving shifting challenges has always been a big part of navigators’ work. Through trial and error, they’ve discovered they get fewer no-shows if they conduct free screening events on Thursdays, instead of Fridays, for example. They’ve learned to confirm appointments by text instead of by phone, after noting texting helped cut back on confusion and missed appointments.

Learning and tweaking the program like that has helped remove more roadblocks to care, says Stephen Grubbs, a medical oncologist and a founding member of the advisory council of the Delaware Cancer Consortium, which developed the state’s approach.

“This program has been so successful I think because it’s built on data and evidence,” Grubbs says. The state didn’t just screen more people, it also got them into earlier treatment, which ultimately saved lives, he says: “The final end point was, did we change mortality? And the answer was yes. And that’s where you’ve got to get to. If you don’t get there, the other stuff really doesn’t matter, does it?”

Grubbs says it helps that the economics of the program work, too. Catching cancers earlier means less invasive, less costly treatment with better outcomes which, in turn, helps reduce overall cancer costs. All that is possible, he says, because of patient navigators.

“We took the barriers down, the navigators grease the system and made sure it all flowed through — that’s exactly what it was,” he says.

The state now hopes to build on its success, getting more funds to hire more navigators to target other cancers.

Delaware benefitted from having a unified approach, with support from politicians, physicians, community health centers and patient advocates, says Karen Knudsen, CEO of the American Cancer Society. “Having a state cancer plan is something they embrace, and that 20 years of work is starting to bear fruit,” she says.

The state demonstrated the importance of patient navigators, who now play big role in cancer care nationally.

“Everybody knows it’s the right thing to do,” Knudsen says. “And I think there’s a good, strong business case for it as well because of the lower cost of care for patients who are navigated.”

The problem, she says, is insurance doesn’t cover navigation services, which means cancer treatment centers or nonprofits like hers have to fund the cost.

She says she hopes that will change, especially after she spoke to President Biden last month at the White House’s Cancer Moonshot announcement.

“He did not specifically talk about navigators using that word, but he did talk about eliminating disparities and increasing access,” she says. “What I hear when I hear that, I hear “navigation.”

Back at Tabitha Medical Care, after patient navigator Margarette Osias completes scheduling her mammogram, she tells Michelaine Estimable she will call her and send her a text message to remind her.

Then, as she does with every patient she sees, Osias turns to Estimable to ask her to help spread the word: “If she goes to a church or if she’s in the community, if she can share that information with maybe other women that she can let them know that they can come.”

Will she do that?

“Yes,” Estimable answers emphatically. “Yes.”

Source: Delaware is shrinking racial gaps in cancer death. Its secret? Patient navigators

Wolfson: In pursuit of a world-class health data system

Good arguments, challenge given complexity and jurisdictional issues. Some progress through programs like MyChart which makes managing my hospital-based visits and tests so much easier:

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 health care, where systems are too often stuck in the past.

Canadian governments have invested heavily to advance the use of health data, most often without a clear national vision. An incoherent approach for health data is hurting health outcomes, escalating sector costs and expanding inequities.

The health sector relies on data to guide almost every decision, from the choice of an antibiotic for treating an individual’s simple urinary tract infection, to national pandemic policies that affect millions of Canadians.  The challenge is that health and health-related data are so poorly organized and managed in Canada.

While health-care providers create and have responsibility for safe management of records of health care encounters, personal health information in Canada should be available to patients as well.

The reality is that patients continue to have limited access to or insight about data about them, as that remains under the de facto control of myriad and siloed health-service providers. The inevitable result of this scattered provider-centric rather than patient-centric approach is that patient data are typically spread among their various health care providers’ uncoordinated and unstandardized data systems. The result: both providers and patients have to work with incomplete and incoherent information.

The health sector has invested for years in digital technology in the mistaken belief it would immediately solve our health data woes. We have failed to realize the true obstacle to effective health data collection and use is not mainly technological, but a matter of policy and governance.

To realize its tremendous promise, health data in Canada must become centred around the individual. Services would be designed around people and by people. The “life flows” of patients and families would mesh with the “work flows” of providers and institutions. There would be one centrally accessible virtual digital record for each of us.

As patients move from home to care setting, and from provider to provider, data would remain seamlessly accessible for those in the patient’s “circle of care”; no need to repeat your health history for each new provider. Data flows about a person—who sees what—would be transparent to the person involved or to their proxy.

Health-care providers would continue to access personal information for the purposes of individual care, while a new role—health-data stewards—would be mandated to curate population-based data for public good while ensuring privacy and confidentiality.

How can we make this vision a reality in Canada?

This will only happen with a fundamentally reimagined approach to health data policy and governance for the digital age, grounded in mutual trust. Governments need to trust the public by providing clear and complete information, with people in Canada trusted to act for the good of the community. The public would be involved in policies regarding health data collection, sharing, use and communication. And governments need to make real their commitments to respect Indigenous data governance.

Governments must also trust each other and recognize the over-riding importance of coherent pan-Canadian data.  At present, each province and territory has its own health data policies, standards and governance, with very little active coordination across borders. Even in the area of death certification, where the vital statistics registrars have worked together for many decades, we have the current failure to agree on and report COVID-related causes of death in a standardized manner.

Accessing the routinely collected data that do exist is a marathon for fully authorized researchers, for example to study post-marketing drug safety and effectiveness. Even with all the available approval processes in place, it has still proven impossible to analyze these kinds of data for the country as a whole.

These pervasive blockages to generating coherent and timely pan-Canadian information seriously impairs our ability to respond to public health threats and generate insights that could improve health outcomes for all.

Ultimately, we need to rethink—not rejig—how we manage and use health data. The Pan-Canadian Health Data Strategy report, authored by an Expert Advisory group, points out the need for a culture shift in health data use. Public input has to be part of the transformation to person-centred health care and health data systems.

Of course, updating health data systems has 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 the federal government leveraged this clout—using both carrots and sticks—so that people in Canada 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. Vivek Goel is president and vice-chancellor of the University of Waterloo. Both are members of the Expert Advisory Group on the Development of the Pan-Canadian Health Data Strategy.

Source: In pursuit of a world-class health data system

Kaplan-Myrth: Health-care workers have your backs. Please protect us too

From our family doctor:
Those of us who have been the recipients of harassment and intimidation over the last two years — who have experienced the overlap between antivax/antimask rhetoric and anti-semitism, racism, homophobia and misogyny — were overcome by a sense of foreboding as trucks rolled into downtown Ottawa more than a week ago. These events, now spreading to the rest of Canada, are a warning to us all.By now everyone has seen the photos of Nazi and confederate flags on the backs of trucks. Residents of downtown Ottawa are powerless against trucks honking their horns all night, diesel fumes wafting into their windows. Food was taken from the Shepherds of Good Hope shelter. Women survivors of violence, traumatized, cried out for help, unable to safely walk outside the Cornerstone shelter. An employee at a local business was physically assaulted. LGBTQ community members were confronted with transphobic placards; a shop window with a rainbow flag was broken. In a virtual townhall meeting led by Ottawa Centre MPP Joel Harden, the chat was disrupted at one point because of anti-Black, racist comments.

The mayor has declared that downtown Ottawa is “under siege,” in a state of “emergency.” As the hate spreads across the country, health-care workers in Toronto and Vancouver were warned not to dress in scrubs in the streets, to avoid being a target for hate. In response, Dr. Lisa Salamon-Switzman, an emergency room physician in Toronto, posted on Twitter that she would wear her scrubs, that as a granddaughter of Holocaust survivors, she would not cower from those espousing hate.

Source: Kaplan-Myrth: Health-care workers have your backs. Please protect us too

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.