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Opinion: As a nurse and as a person, my life is richer working in palliative care

Opinion: As a nurse and as a person, my life is richer working in palliative care

As a nurse, my transition from the emergency room to a palliative care residence has been both humbling and somewhat disturbing.
From my experience, in the ER, we stress mostly curative and life-saving measures without much regard or time to spend on symptom management, empathy or positive communication with the loved ones of the patients whose lives we are trying to save.
I've seen many very good emergency room doctors who are masters at diagnosing and then saving patients' lives — but seem almost incapable of managing those whose illness have progressed beyond the point where they can be cured.
One would think that with our rapidly aging population, medical schools would stress the importance of palliative care to their students and make learning opportunities mandatory.
A 2020 study published in the Canadian Medical Association Journal suggests this is not the case. It found that of Canada's 17 medical schools, undergraduate palliative care rotations were mandatory at two schools, optional at 13 and not available at two others.
When I was in nursing school some 20 years ago, I can remember little, if any, importance put on treating patients in palliative care. The training was based on spotting signs and symptoms that could help diagnose and cure a patient. Judging by my interactions with young nurses in more recent years, I'm not sure things have changed all that much.
I suppose we shouldn't be surprised by this culture in health care. That's what we tend to see on TV in shows like The Pitt and other series about ERs and hospitals. Saving a patient's life is portrayed as being glamorous and heroic, while a patient 'being palliative' is often seen as negative and associated with the abandonment of hope.
Contrary to what appears to be the popular belief that working in palliative care must 'be depressing' — 'all you do is give morphine,' my ER pals often say — the truth is quite the opposite.
Palliative care is based on improving quality of life and treating all symptoms — physical, psychological, spiritual and social. Drugs used in palliative care are based on close supervision of symptoms and patient needs.
With help from specialized doctors, an experienced team of nurses, patient-care attendants, supportive care workers and volunteers, my life both as a nurse and a human being has become richer working in palliative care as I am surrounded with vivid lessons of humanity and new types of hope each day.
As we wind up National Palliative Care Week in Canada (May 4-10), it's a perfect time for nursing and medical schools to recognize there is a need for more knowledge about palliative care.
Let's make sure that empathy, humanity, critical thinking, communication and teamwork are seen as a cornerstone of health-care education in this country.
Nathan Friedland has been a nurse for 20 years and currently works at a palliative care residence. He lives in Roxboro.
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Stored in Canada, owned in the U.S.: Sovereignty concerns grow over health data
Stored in Canada, owned in the U.S.: Sovereignty concerns grow over health data

CTV News

time09-08-2025

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Stored in Canada, owned in the U.S.: Sovereignty concerns grow over health data

Canada's population-based health data is a valuable national asset, not just for improving care, but also for advancing the global health AI race. But experts are sounding the alarm that this data may be at risk from foreign surveillance, monetization and a lack of adequate domestic protections. A new report, published in the Canadian Medical Association Journal, outlines both the opportunities and vulnerabilities tied to Canada's health information. The report urges immediate and multipronged action to protect the data's security and sovereignty. 'The good news is our health data is valuable,' said Dr. Kumanan Wilson, University of Ottawa professor and both the CEO and chief scientific officer of the Bruyère Health Research Institute, in an interview with Wilson says Canada's health data also has monetary value because we are in the age of artificial intelligence and Canada has a lot of what AI needs. 'We have population-based data because we have a public health system,' he said. 'The U.S. doesn't have that. Our data is more valuable than their data.' This, Wilson says, creates a significant economic opportunity for Canada to lead in health AI, but only if the country can ensure the data stays secure and is used appropriately. 'I would rather have a situation where Canadian companies are building AI algorithms based on our data (rather) than U.S. companies , and that Canada can benefit from it,' he said. 'Backdoor access' At the centre of the concern is where and how health data is stored. Electronic medical records from hospitals and clinics are often stored on cloud servers and their management is dominated by three U.S. providers: Epic, Cerner, and MEDITECH. While many are physically located in Canada, they are typically owned and operated by U.S. tech giants , such as Amazon Web Services, Google Cloud and Microsoft Azure. This setup, experts warn, creates a backdoor for U.S. authorities to demand access. 'Just because it's on Canadian soil doesn't necessarily provide the protection , because it is still held by a U.S. company,' said Wilson. The risk isn't theoretical. Following the 2001 Patriot Act and the 2018 Clarifying Lawful Overseas Use of Data Act (CLOUD Act), U.S. law enforcement agencies can legally compel American companies to hand over data, even if it's stored in another country. 'The U.S. government could still mandate transfer because these are U.S. companies and they will be required to do what the U.S. government asked them to do,' Wilson said. 'We know that this administration can cause companies to do what it wants through offering contracts or access to government contracts and government money.' In an email to Epic said most Canadian customers have their own database and control over it. The company said it is not subject to the U.S. CLOUD Act, as it 'does not meet the definitions for the type of companies to which it applies.' Epic added that the health data of its Canadian customers is stored in Canada, and that 'most customers manage the servers and encryption keys for their data.' For clients who use Epic to host their systems, the company said the data still resides in Canada, with Epic managing the servers and keys. When asked about potential Canadian data localization laws, the company responded that Epic staff have 'years of extensive training and deep expertise' and warned that having another company manage its software could 'significantly increase the risk of data corruption, cyber security breaches, and patient safety errors.' 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'The easiest way to think about this is when you go on a website and you put in a password … if a hacker was to get the data, they wouldn't get the plain text of what you're putting in, they would get mumbo jumbo,' he said. When it comes to security controls, sovereign data storage infrastructure is a key component. 'We need to move in the direction of sovereign Canadian data servers controlled by Canadian companies,' Wilson said. 'Though the U.S. companies are dominant in the market because they are good at what they do… we have to make sure we can match that.' Still, both Wilson and Kotak agree that digitized systems are crucial for modern care. 'We cannot go back to pen and paper,' Kotak said. 'We got to leverage the advancements in technology that are occurring … but we have to think these things through before just hitting 'I agree' and allowing any vendor to come in and introduce a piece of software that may possess additional risks.' Wilson echoed the sentiment, framing the issue not just as one of risk, but of missed opportunity. 'Canada could lead the world in health AI because of our public health system and our population health data,' he said. 'What I would hate to see is the country that is south of our border… use our own data to grow their economy and have a competitive advantage against us.'

Canadians' health data at risk of being handed over to U.S. authorities, experts warn

time31-07-2025

Canadians' health data at risk of being handed over to U.S. authorities, experts warn

Canadians' electronic health records need more protections to prevent foreign entities from accessing patient data, according to commentary in the Canadian Medical Association Journal. Canadian privacy law is badly outdated, said Michael Geist, law professor and Canada Research Chair in internet and e-commerce law at the University of Ottawa and co-author of the commentary (new window) . "We're now talking about decades since the last major change." Geist says electronic medical records systems from clinics and hospitals — containing patients' personal health information — are often controlled by U.S. companies. The data is encrypted and primarily stored on cloud servers in Canada, but because those are owned by American companies, they are subject to American laws. Enlarge image (new window) Michael Geist is a law professor at the University of Ottawa and Canada Research Chair in Internet and E-commerce Law. Photo: Submitted by Michael Geist For example, Geist points out, the U.S. passed the Clarifying Lawful Overseas Use of Data (CLOUD) Act (new window) in 2018, which can compel companies to disclose customer information for criminal investigations, even if it's stored outside the United States. The law allows for bilateral agreements with the U.S. and other countries. Canada and the U.S. began negotiations (new window) in 2022. The companies have Canadian laws that may say they've got to provide appropriate protections for that data, Geist said. But they may have U.S. law that could compel them to disclose that information. Canada's laws, Geist says, have not yet found a way to respond to that. How health data could be used The CMAJ commentary says serious privacy, security, and economic risks arise when companies in other countries hold and use Canadian data. 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(The cloud companies say their customers own and control their own data.) We should be the ones to benefit from that, Geist said. We should be the ones who are entitled to appropriate privacy protections. Enlarge image (new window) Dr. Sheryl Spithoff, with the family and community medicine department at the University of Toronto, says patient data needs additional protections. Photo: (Turgut Yeter/CBC) Dr. Sheryl Spithoff, an assistant professor at the University of Toronto, says these risks highlight how Canada's privacy laws fall short. This data is patient data. It belongs to patients. That should be used for reasons that are in their interests, that bring them benefit, that don't cause harm. Tech companies respond The CMAJ commentary says three U.S. cloud companies dominate: Google Cloud, Microsoft Azure and Amazon Web Services. Google told CBC News that customer data belongs to our customers, not to Google Cloud. It says, like many tech companies, it gets requests from governments and courts to disclose customer information, usually as part of criminal investigations. The company says it follows a transparent, fair, and thorough process to respond. It didn't comment specifically about Canadian health data. Google provides a response on a case-by-case basis, taking into account different circumstances and informed by legal requirements, customer agreements, and privacy policies, it said. We are committed to protecting privacy while also complying with applicable laws. Microsoft said that in the second half of 2022, of the nearly 5,000 demands for consumer data it received from U.S. law enforcement, 53 warrants sought content stored outside of the U.S. Microsoft's compliance team reviews government demands for customer data to ensure the requests are valid, rejects those that are not valid, and only provides the data specified in the legal order. Amazon said it does not disclose customer information in response to government demands unless we're required to do so to comply with a legally valid and binding order. In a statement, a spokesperson for Amazon Web Services wrote there have been no data requests to AWS that resulted in disclosure to the U.S. government of enterprise or government content data stored outside the U.S. since we started reporting the statistic. Limits to Canada's privacy laws Privacy experts say the failure of Canada's privacy laws to keep pace with changing technology has put the country's data sovereignty at risk. Geist says strengthening provincial laws and the federal Personal Information Protection and Electronic Documents Act, known as PIPEDA, could help create a guardrail against potential U.S. data requests reaching into Canada. 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Alison Northcott (new window) · CBC News · National Reporter Alison Northcott is a national reporter for CBC News in Montreal, covering health, business and politics. Born in Winnipeg, she is a graduate of Toronto Metropolitan University and has over 15 years experience in journalism. With files from Christine Birak and Melanie Glanz

Canadians' health data at risk of being handed over to U.S. authorities, experts warn
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CBC

time31-07-2025

  • CBC

Canadians' health data at risk of being handed over to U.S. authorities, experts warn

Canadians' electronic health records need more protections to prevent foreign entities from accessing patient data, according to commentary in the Canadian Medical Association Journal. "Canadian privacy law is badly outdated," said Michael Geist, law professor and Canada Research Chair in internet and e-commerce law at the University of Ottawa and co-author of the commentary. "We're now talking about decades since the last major change." Geist says electronic medical records systems from clinics and hospitals — containing patients' personal health information — are often controlled by U.S. companies. The data is encrypted and primarily stored on cloud servers in Canada, but because those are owned by American companies, they are subject to American laws. For example, Geist points out, the U.S. passed the Clarifying Lawful Overseas Use of Data (CLOUD) Act in 2018, which can compel companies to disclose customer information for criminal investigations, even if it's stored outside the United States. The law allows for bilateral agreements with the U.S. and other countries. Canada and the U.S. began negotiations in 2022. The companies have "Canadian laws that may say they've got to provide appropriate protections for that data," Geist said. "But they may have U.S. law that could compel them to disclose that information." Canada's laws, Geist says, have not yet found a way to respond to that. How health data could be used The CMAJ commentary says "serious privacy, security, and economic risks arise when companies in other countries hold and use Canadian data." Among them, the authors point to the potential use of that information for law enforcement surveillance, or by private companies seeking to use the data to make money. Health data is deeply personal, and ongoing Canada-U.S. political tensions may cause some to be even warier about where and how their information is stored and used, says Lorian Hardcastle, assistant professor in the law faculty and Cumming School of Medicine at the University of Calgary. "There is a compelling argument to be made to say, 'Well, you know, we just need to have this information stored in Canada and not have those dealings with American companies,'" said Hardcastle. Aside from the CLOUD Act, another concern Geist lays out is the potential for foreign companies to profit off of Canadians' health data. With the growth of AI, Geist says that data has become increasingly valuable — a tremendous pool of information that could potentially be used to generate AI algorithms. (The cloud companies say their customers own and control their own data.) "We should be the ones to benefit from that," Geist said. "We should be the ones who are entitled to appropriate privacy protections." Dr. Sheryl Spithoff, an assistant professor at the University of Toronto, says these risks highlight how Canada's privacy laws fall short. "This data is patient data. It belongs to patients. That should be used for reasons that are in their interests, that bring them benefit, that don't cause harm." Tech companies respond The CMAJ commentary says three U.S. cloud companies dominate: Google Cloud, Microsoft Azure and Amazon Web Services. Google told CBC News that "customer data belongs to our customers, not to Google Cloud." It says, like many tech companies, it gets requests from governments and courts to disclose customer information, usually as part of criminal investigations. The company says it follows a "transparent, fair, and thorough process" to respond. It didn't comment specifically about Canadian health data. "Google provides a response on a case-by-case basis, taking into account different circumstances and informed by legal requirements, customer agreements, and privacy policies," it said. "We are committed to protecting privacy while also complying with applicable laws." Microsoft said that in the second half of 2022, of the nearly 5,000 demands for "consumer data" it received from U.S. law enforcement, 53 warrants sought content stored outside of the U.S. "Microsoft's compliance team reviews government demands for customer data to ensure the requests are valid, rejects those that are not valid, and only provides the data specified in the legal order." Amazon said it "does not disclose customer information in response to government demands unless we're required to do so to comply with a legally valid and binding order." In a statement, a spokesperson for Amazon Web Services wrote "there have been no data requests to AWS that resulted in disclosure to the U.S. government of enterprise or government content data stored outside the U.S. since we started reporting the statistic." Limits to Canada's privacy laws Privacy experts say the failure of Canada's privacy laws to keep pace with changing technology has put the country's data sovereignty at risk. Geist says strengthening provincial laws and the federal Personal Information Protection and Electronic Documents Act, known as PIPEDA, could help create a guardrail against potential U.S. data requests reaching into Canada. In his commentary, Geist calls for "stronger penalties for unauthorized disclosure of personal information without consent and guidance that foreign court orders related to Canadian data are unenforceable in Canada." Innovation, Science and Economic Development Canada says PIPEDA applies when transferring data across the border, but Geist says the law itself isn't robust enough. Geist also calls for the country to develop Canadian cloud servers for health data, and to ensure that data is hosted on Canadian soil. The wealth of health information generated by the health-care system should stay in Canada and benefit Canadians, Geist says. He and his co-authors see the potential for health AI algorithms to be developed in Canada by Canadian companies, with robust safeguards, to support health-care decisions "based on data representative of Canada's population."

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