A recent study reveals that millions of Canadians’ health data may be available for purchase by the pharmaceutical industry, raising significant concerns about patient privacy and care. Dr. Sheryl Spithoff, the lead author of the study published in JAMA Network Open, emphasizes the need for transparency in how medical data is managed. The implications of these findings indicate that the appropriate practices can be leveraged to increase the pharmaceutical industry’s stranglehold on patient care in Canada.
Their study goes far beyond the contribution of the medical record industry through Canada. It gets into the nitty gritty of how patient data exchanges hands among various private players. Canada’s healthcare system is quickly going electronic. Experts are sounding the alarm over the threat posed to patient data protection.
The Study’s Findings
Dr. Spithoff, who is based at Women’s College Hospital in Toronto, insists that “this is really an area where we need transparency.” She highlights a disturbing development. Most patients have no idea where their sensitive medical information goes and how it’s used.
Matthew Herder, director of the Health Justice Institute at Dalhousie University in Halifax, further amplifies these concerns. He cautions that these data-sharing models might shift the focus of patient care away from patients’ needs and toward those of the pharmaceutical industry. This shift comes at a higher cost to healthcare systems, conflicting with the very mission of healthcare services.
The medical data profoundly influences what treatments are provided and how the pharmaceutical industry is going to market their drugs. The consequences of these practices are far-reaching. Dr. Danyaal Raza, a family doctor in Toronto and past chair of Canadian Doctors for Medicare, agrees that these findings pose significant risks as private companies increasingly deliver healthcare services.
Outdated Privacy Laws
Experts also are calling on the federal government to update Canada’s privacy laws to better protect sensitive health records. This obsolescence greatly compounds the growing and damaging issues. Lorian Hardcastle, an assistant law professor at the University of Calgary, said that’s a major problem. Provinces and territories have largely missed the mark on updating their privacy legislation to accommodate these quickly changing technological advances.
“If the data has been de-identified and it’s not reasonable that re-identification would be possible, the law offers quite little protection,” – Lorian Hardcastle
Hardcastle stresses that just taking personal identifiers out of health data doesn’t ensure safety. He believes these laws don’t provide enough safeguards to protect against misuse and unauthorized access. She argues that a reevaluation of Canadian privacy laws is crucial as the healthcare system continues to evolve toward more electronic health records.
In addition, she pushes back on the idea that de-identified data is somehow always safe. “Unfortunately, though, what we thought 10 years ago was de-identified data, now we’re realizing with big data with AI can be re-identified,” she states. This startling realization highlights the need for immediate legislative action to more adequately protect sensitive patient information.
Advocating for Legislative Changes
The new Ontario privacy commissioner’s office is leading the way. They are currently calling on Ontario’s government to amend Ontario’s privacy legislation in accordance with these findings. They state the need for stricter provisions like conducting risk assessments when dealing with personal health data. This recommendation is a step toward building more protections for patients, whose data could be sold off or shared between third-party companies.
“There needs to be greater accountability around the use and sale of de-identified health data, and what happens to that data after it is sold,” – Office of the Ontario Privacy Commissioner
Herder echoes this sentiment, asserting that “all of these things are happening without any degree of transparency.” This extreme level of lack of oversight and accountability calls into question numerous ethical considerations. We need to think about what happens to your personal health data and who benefits from selling it.
Dr. Raza’s view reflects these troubling trends as he reminds us that solutions should put patient care first—not corporate interests. He argues, “What we need to do to solve the primary care crisis is put forward solutions that put patients first, and not profits.”
