A new study finds that some virtual care companies are putting patients’ personal health data at risk

This story is part of CBC Health’s Second Opinion, a weekly analysis of health and medical science news emailed to subscribers on Saturday mornings. If you haven’t subscribed yet, you can do so via click here.

If you visit a doctor virtually through a commercial app, the information you submit in the app could be used to promote a particular drug or service, says the leader of a new Canadian study involving industry insiders.

Industry insiders “were concerned that the care may not be designed to be the best care for patients, but rather may be designed to increase uptake of the drug or vaccine to meet the drug company’s goals,” said Dr. Cheryl Spiethoff, a physician and physician. Scientist at Women’s College Hospital in Toronto.

Virtual care has emerged as a convenient way to access healthcare during the COVID-19 pandemic, allowing patients to consult a doctor via video, phone call or text.

It is estimated that more than one in five adults in Canada — or 6.5 million people — You don’t have a family doctor or nurse practitioner they can see regularly, and virtual care helps fill the void.

But study researchers and others who work in the medical field have raised concerns that some virtual care companies do not adequately protect patients’ private health information from being used by pharmaceutical companies and shared with third parties who want to market products and services.

Female doctor with long brown hair standing in a medical office.
Dr. Cheryl Spithoff, a physician-scientist at Women’s College Hospital in Toronto, co-authored a new study that found the for-profit virtual care industry values ​​patient data and “appears to view data as a revenue stream.” (Turgut Yetter/CBC)

Spiethoff co-authored the study in this week’s issue BMJ is openbased on interviews with 18 individuals working or affiliated with the Canadian virtual care industry between October 2021 and January 2022. The researchers also analyzed 31 privacy documents from the websites of more than a dozen companies.

The for-profit virtual care industry values ​​patient data and “appears to view data as a revenue stream,” the researchers found.

One employee with a virtual care platform told researchers that the platform, “at the request of the drug company, will conduct ‘A/B testing’ by rolling out a new version of the software to a percentage of patients to see whether or not the new version improves drug uptake.”

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Concerns about how data is shared

Matthew Herder, director of the Health Law Institute at Dalhousie University in Halifax, said he hopes the study will draw public attention to what lies behind some of these platforms.

“All of this is happening because of a business model that sees value in collecting that data and using it in a variety of ways that have less to do with patient care and more to do with building the assets of that company,” Herder said. .

A bearded man stands in front of a blackboard.
Virtual care users should be able to easily opt out of their data being used for commercial purposes, says Matthew Herder, director of the Health Law Institute at Dalhousie University in Halifax. (Nick Pearce)

Spiethoff said other industry insiders were concerned about how data, such as browsing information, was shared with third parties such as Google and Meta, the owner of Facebook, for marketing purposes.

The companies put the data into three categories, the study authors said:

  • Registration data, such as name, email address, and date of birth.
  • User data, such as how, when and where you use the website, on what device and your internet protocol or IP address.
  • De-identifying personal health information, such as removing name, date of birth, and modifying zip code.

Some companies viewed the first two categories as assets that could be monetized, employees told researchers.

Not all companies dealt with the third category in the same way. Some used personal health information only for the primary purpose of a patient’s virtual exchange with a doctor, while others used it for commercial reasons, sharing analytics or non-identifying information with third parties.

While each individual data point may not provide a lot of information, advertisers and data analysis companies are combining data from browsing history and social media accounts to provide insight into an individual’s mental health status, for example, the study’s authors said.

One study participant described how partnering for targeted advertising could work: “If someone is coming through our service looking for mental health resources, how can we direct them to some of our partnerships with corporate counseling services?”

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The president of the Registered Nurses’ Federation of Newfoundland and Labrador says the provincial government’s $22 million deal with a private company to provide a phone or video call for medical services is not reassuring for a strong, publicly funded health care system. Yvette Coffey says it should be seen as a stop-gap measure, which stands in stark contrast to the government’s message that virtual care is part of the future of medicine.

Conflict of interest questions

Lorian Hardcastle, associate professor of law and medicine at the University of Calgary, studied Understanding virtual care in 2020. It highlighted issues of continuity of care, privacy legislation and consent policies.

Since then, the uptake of virtual care has accelerated during the COVID-19 pandemic, she said.

“I think the commercialization of the health care system raises concerns about conflicts of interest between what is best for patients, on the one hand, and, on the other hand, what creates the best return for shareholders,” said Hardcastle, who was not. Participate in the BMJ Open Study.

Woman with long brown hair wearing a blouse and jacket.
It can be difficult for some people to distinguish between receiving reliable information from a health care provider on an app and getting services that are being marketed to them, says Lorian Hardcastle, an associate professor of law and medicine at the University of Calgary. (Al-Tahira Forouzan/CBC)

Hardcastle said it would be helpful for industry insiders to acknowledge the problems expressed by health professionals and academics with marketing.

The Privacy Commissioner of Canada, which funded the study, said in an email that health professionals engage in commercial activities and therefore the federal Personal Information and Electronic Documents Protection Act applies. Exceptions exist in British Columbia, Alberta and Quebec, which have broadly similar legislation.

Hardcastle also suggested that self-regulatory bodies, such as regional colleges of physicians and surgeons, may need to reconsider policies on relationships between health providers and industry.

The virtual care industry is responding

CBC News heard from some Canadian virtual care companies who said they take people’s privacy seriously.

A spokesperson for virtual care platform Maple said: “Patient data is only used with explicit consent from patients and only when required for patient-physician healthcare interactions.” “We do not exploit patient data for marketing or commercial gain.”

Rocket Doctor said in a statement that it’s important to note that the company “does not do any of the things researchers cited as common in the telehealth industry.”

Telus said all data collected from its virtual care service is treated as personal health information.

“Telus Health does not receive any money from pharmaceutical companies for our virtual care service nor do we sell any patient data collected,” said Pamela Snively, the company’s chief data and trust officer.

The source of the information is difficult to determine

It can be difficult for some people to distinguish between receiving reliable, accurate information from a health care provider on an app and getting services marketed to them that the health provider may or may not find useful, Hardcastle said.

“Your family doctor is not trying to collect redundant information in order to market services to you,” she said.

Some provinces and territories pay for virtual services. In other cases, patients pay themselves or are covered by their employer or private insurance.

For example, the Nova Scotia government has a contract with Maple to provide residents without a primary care provider with unlimited virtual visits. Those with a regular caregiver can have two visits per year paid for by the county.

Tara Sambali, senior scientific director at Nova Scotia’s Center for Health Innovation, said the province’s contract with Maple means population data can’t be used in other ways, such as by third-party providers.

The county doesn’t have that level of control over other virtual care providers, said Sambali, who has a doctorate in health informatics.

Calls for an opt-out option

Users should be able to easily opt out of their data being used for commercial purposes, said Herder, of Dalhousie University. He also said that if the data does not represent the full diversity of Canada, the algorithms that shape clinical decision-making could be racially biased.

Although patient awareness is important, patients are not in a position to fix this problem, Spiethoff said.

“We need better legislation and regulation, and we need better funding for primary care,” she said. “Or people can integrate virtual care into their offline care.”

Self-regulation by industry is unlikely to lead to change, Spiethoff and her colleagues said.

The researchers admitted that they were limited to publicly available documents and that they did not interview those associated with external advertisers.

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