eHealth raises data, privacy, and clinical questions: experts

eHealth technologies have been widely billed as bridging divides between patients and clinicians, and were recently touted by Alberta premier Jason Kenney as "simply a 21st-century version of calling up the doctor." But observers in the world of data protection and clinicians say the picture is more complicated and that the technologies have implications for the Canadian legal landscape, the provision of medicine itself, and the uses of data in a post-COVID health system. Llana James -- a PhD candidate in the faculty of medicine at the University of Toronto who studies the interaction of artificial intelligence (AI) and the practice of medicine -- pointed to what she said are Canada's notoriously lax data protection regulations. "Canada has one of the lowest thresholds of data regulation in the first world," James said. James says that the conversation around privacy law in Canada is too focused on individual occurrences like leaks, instead of the broader ways in which data usage is changing systems like medicine. "This is not just simply about data leaks or information. It's about how the data economy is structured and whether the structure of that data economy is one in which PIPEDA -- which is the privacy commissioner's instrument -- is sharp enough. Is it surgical enough?" James said, referring to the acronym for the Personal Information Protection and Electronic Documents Act, Canada's federal privacy law. James says PIPEDA doesn't cover the way contracts are negotiated between apps that use public health data and provinces. Teresa Scassa, a law professor at University of Ottawa and an observer of privacy law, said the issues around data raised by technologies like telemedicine are beginning to outgrow the provincial jurisdictions that usually regulate the provision of health care and health data. Private sector companies collecting data are generally regulated by PIPEDA, which Scassa said is "sadly outdated," and the type of health data collected is blurring the lines more and more. "What we've traditionally thought of as health care data has typically had a particular style and format, and then we're starting to see other data, especially with big data and AI -- people are scraping social media data to draw conclusions about people's health. So is that health data, or what is it?" Scassa said in a phone interview with The Wire Report. "We're running into more and more of these situations in the digital context, where we have these big issues that are really important, and have broad impacts. If they aren't dealt with in a coherent systematic way across the country, it's going to lead to problems," she said. Technologies like eHealth are "game changers in terms of their potential impact and because they often deal with issues that are being deployed in areas that have traditionally been under provincial jurisdiction, but the questions are bigger and have this broader national scope to them," Scassa said. At the same time, she added, lawmakers might be hesitant to establish new overarching federal legislation, because of recent disputes around jurisdiction between some provinces and the federal government. Earlier this month, Kenney accused the federal government of interfering with the province’s efforts to launch its COVID-19 tracing app, ABTraceTogether, which was unveiled in May. “Unfortunately the government of Canada has told Google and Apple not to work with the government of Alberta — or other provincial governments — on improving the TraceTogether app,” Kenney told reporters. "I think in the past has created a reluctance to deal with big issues, or to deal with them in the best possible way," Scassa said, pointing as well to a possible tension between federal privacy commissioner Daniel Therrien's stated desire to establish a human rights-based framework for privacy and PIPEDA's constitutional authority under the federal trade and commerce power. "My sense is that the federal government is very reluctant to take an approach that sets out privacy as a human right," Scassa said, "because it's afraid that if it does so, it will undermine the claims that this legislation is constitutional on the basis of the trade and commerce power -- that it has to be about business, not about human rights." The sector has rapidly expanded. In a Telus Corp. quarterly earnings call last week the company -- by far the biggest player in the sector in Canada -- reported that its patient-to-doctor app Babylon had experienced some 420 per cent growth in customers. Canaccord Genuity analyst Aravinda Galappatthige wrote in a note following the call that the company's health division represented a "highly prospective growth segment.” Since launching the Babylon app in British Columbia last year, Telus has since expanded it to Alberta, Ontario, and Saskatchewan. And it’s expected that COVID-19 will only accelerate that growth. In a March interview, Deloitte Canada’s director of technology, media and telecommunications research Duncan Stewart said the pandemic meant eHealth would be “a more or less permanent change because of the pandemic.” Telus said in a statement that it is "committed to meeting or exceeding our compliance obligations to earn and maintain patient and stakeholder trust through rigorous data privacy and governance standards." Telus and "Babylon do not and will not sell personal health information. We collect, use, and disclose data for specified purposes and in accordance with applicable privacy laws,” the company wrote in an email to The Wire Report Since being approved for use in Alberta and having its codes added to doctors' medical billing schedules in March, Telus’ Babylon app is now being investigated by the province's privacy watchdog. “No one is required to use Babylon by Telus Health. I encourage physicians or patients with concerns about this app to remain opted out of using it while my office reviews the app’s compliance with Alberta’s privacy laws,” Alberta's information and privacy commissioner Jill Clayton said in an April release. James also pointed to recent amendments in March to Ontario's Freedom of Information and Protection of Privacy Act (FIPPA) and the Personal Health Information Protection Act (PHIPA) in an omnibus economic update bill. The amendment to FIPPA passed as part of the economic update bill calls for the creation of an "extra-ministerial data integration unit." The March omnibus bill amendments to PHIPA then allow for that extra-ministerial data integration unit to "use personal health information" for "the management or allocation of resources; the planning for the delivery of programs and services provided or funded by the Government of Ontario, including services provided or funded in whole or in part or directly or indirectly; and the evaluation of those programs and services." In other words, the definition of what entities can use health information to assess public services has been greatly expanded. James, who also sits on the Black health curriculum advisory committee at the University of Toronto faculty of medicine, said that the language of the bill was far too vague for something as important as the maintenance of personal data and is calling for new federal regulation governing the relationships between provinces and third parties when it comes to healthcare data. "We need a new federal piece added. Not just PIPEDA, but we need a piece added to the work Tommy Douglas did," she said, referring to the Saskatchewan premier widely regarded as the father of the Canadian public healthcare system, "that in order for us to maintain universal healthcare, this is the way it has to be negotiated with third parties." Federal authority is needed, she said, to create a benchmark that provincial health authorities can work from. After the creation of such a law, "then your provincial bodies can have at it. But it can't be left up to a political office that can last anywhere between one and four years making these decisions. They're too long term." The privacy practices of eHealth apps operated by private companies would be regulated by PIPEDA, Scassa said, adding that regulation is difficult because healthcare is a provincial matter. "For private sector companies that are collecting data that pertains to health or relates to health, they would fall under PIPEDA, and could be regulated under PIPEDA. It's just making this interface between what provinces do under their health legislation and what gets done under PIPEDA and how those companies interface with the healthcare system -- that's where I think it gets really complicated," Scassa said. Just after the passing of the legislation in March, Scassa wrote on her blog that she was concerned about the changes to information privacy law, and pointed out that the language of the amendments does not specify that the extra-ministerial data integration unit must be a public sector body. "It could be a person, a non-profit, or even a private sector organization. It must be designated in the regulations, but it is important to note the potential scope," she wrote at the time. "We need regulation around how these provinces are permitted to broker deals, and what that brokering looks like," James said. CLINICAL IMPLICATIONS Because the apps rely on a baseline level of technological literacy, says Vanderbilt Heart and Vascular Institute cardiologist Walter Clair, patients without that literacy get "stigmatized," with the effect of exacerbating existing disparities in health care. The "doctor patient relationship has been contaminated by this," Clair said in an interview with The Wire Report, explaining that already time-strapped physicians may grow to resent the difficulties of dealing with a patient that cannot properly operate the app's camera or that has an unreliable internet connection. Because those without reliable internet connections and smartphones are often already marginalized there is a potential that an increased reliance on telemedicine may widen existing disparities. According to the 2019 CRTC Communications Monitoring Report, just 40.8 per cent of rural Canadians had access to an internet service at the CRTC's 50/10 Mbps service objective. "You still have the fact that if you don't have a smartphone, then you don't have access to telehealth," Clair said. He also emphasized that physicians often rely on nurses and other staff to facilitate patient comprehension of treatment plans and options, and much of that comprehension is facilitated through face-to-face contact. A physician also relies upon visual assessments in-person to assess a number of different functions, like ease of breathing. "That doesn't happen in telemedicine," he said. Clair said that while telemedicine can still be a benefit to those who currently have minimal access to medical care -- "I would not forego the good in an attempt to achieve perfection," he said -- health care providers should be mindful of disparities that can carry over into telemedicine. Telemedicine is "going to put the health disparities in the bullseye, so to speak," he said. Karine Latulippe, a PhD candidate at Laval University in Quebec who has conducted a literature review on research into social health inequalities and telemedicine, wrote in an email to the Wire Report that "I think most people know that eHealth has the potential to improve health inequalities." "What is not clear is how we can use the benefits of eHealth without creating these inequalities. Part of the solution is to involve people at risk of health inequalities in the development of an eHealth tool. This allows developers to understand the challenges these people face and find solutions," she wrote. Telus, for its part, acknowledges that there are situations in which telemedicine is not appropriate. "Video-based consultations are appropriate for approximately 80 per cent of patient concerns but there are situations where a doctor will advise the patient to see a clinician in-person for a specific test or examination," the company wrote in a statement to the Wire Report. For Barak Richman, a professor of law and healthcare policy at Duke University, the rise of telemedicine has the potential to positively disrupt the healthcare system. "There are lots of risks, but there's also a risk in sustaining a current model" of healthcare delivery, he said, while acknowledging that disparities may persist. "It will be a challenge, make no mistake, to address systemic racism and systemic inequality," he said, adding that many digital technologies are not "not culturally and interpersonally nimble." Clair, the Vanderbilt cardiologist, explained that telemedicine may be particularly helpful in physician-to-physician contact: connecting generalists to specialists in rural areas where the latter are not readily available. eHealth, Clair said, has been helpful in situations where "the primary care doctor wants to get a back up from a specialist, and have been able to leverage that system to the benefit of rural hospitals." "That feature of telehealth has been a standard and effective feature," he said. — With reporting by Michael Lee-Murphy at mleemurphy@thewirereport.ca and editing by Anja Karadeglija at akarad@thewirereport.ca and Adam Langenberg at alangenberg@thewirereport.ca

eHealth raises data, privacy, and clinical questions: experts

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eHealth raises data, privacy, and clinical questions: experts

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