Millions of Canadians' health data available for sale to pharmaceutical industry, study shows

Alison Northcott · CBC News

· Posted: May 09, 2025 4:00 AM EDT | Last Updated: 7 minutes ago

Going to the doc tin impact sharing your astir idiosyncratic information, including details astir your health, aesculapian past and prescriptions. 

It each ends up successful your aesculapian grounds — but a caller survey by researchers astatine Women's College Hospital successful Toronto recovered that in immoderate cases, backstage companies are accessing parts of that information and selling it to pharmaceutical companies. 

"This is truly an country wherever we request transparency," said the study's pb author, Dr. Sheryl Spithoff.

The study, published successful JAMA Network Open, examined however the aesculapian grounds manufacture works successful Canada and however diligent information flows betwixt antithetic backstage entities.  

Through a bid of 19 interviews, the researchers concluded "chains of for-profit superior attraction clinics, physicians, commercialized information brokers and pharmaceutical companies ... work unneurotic to person diligent aesculapian records into commercialized assets."

Those assets, the survey said, are past utilized to "further the interests of the pharmaceutical companies."

Spithoff and her colleagues identified two antithetic models. In one, a backstage session sells information to an extracurricular company, with idiosyncratic accusation similar names and commencement dates removed. The institution past offers to merchantability oregon analyse that de-identified accusation for its clients successful the pharmaceutical industry. 

In the different model, the session is simply a subsidiary of the institution collecting the data, giving that institution adjacent more direct access to diligent information. 

The survey said patients were not included successful decisions astir however their information was used. 

"We request oversight," Spithoff said successful an interview.

"What we cognize from different surveys and interviews with patients is that this is not however they privation their information handled."

Experts telephone for updated privateness laws

The study's findings suggest these practices could springiness the pharmaceutical manufacture much power implicit diligent attraction successful Canada.

Matthew Herder, manager of the Health Justice Institute astatine Dalhousie University successful Halifax, said portion determination whitethorn beryllium imaginable for this benignant of data-sharing to assistance patients, determination is besides a hazard these models volition propulsion diligent attraction successful a absorption that benefits pharmaceutical companies and drives up costs for health-care systems.

"All of these things are happening without immoderate grade of transparency," Herder said. "That's wherefore this insubstantial is specified an important paper. It's starting to bring to airy what's truly going on."

The Office of the Privacy Commissioner of Canada declined to remark connected the survey itself, but said organizations taxable to privateness laws indispensable travel definite rules astir safeguarding personal information. 

While astir provinces and territories person privateness laws specifically related to wellness records, Lorian Hardcastle, an adjunct instrumentality prof astatine the University of Calgary, said they are outdated and request strengthening.

As the health-care strategy moves toward more physics wellness records, often managed by backstage companies, Hardcastle said updates are needed to amended support diligent information. 

"Data being managed not connected insubstantial but by third-party entities truly demands that policymakers rethink this authorities that was created decades agone erstwhile it was inactive insubstantial records sitting successful a doctor's office."

Some of the existent laws bash small to support diligent information from changing hands if idiosyncratic identifiers person been removed, Hardcastle said. 

"If the information has been de-identified and it's not tenable that re-identification would beryllium possible, the instrumentality offers rather small protection," she said. 

"Unfortunately, though, what we thought 10 years agone was de-identified data, present we're realizing with large information with AI tin beryllium re-identified."

In a statement, the bureau of the Ontario privateness commissioner said wellness accusation custodians person to instrumentality tenable steps to guarantee information is protected and secure, and acknowledged wellness information has go an progressively invaluable commodity.

"There needs to beryllium greater accountability astir the usage and merchantability of de-identified wellness data, and what happens to that information aft it is sold," it said.

The bureau is advocating for changes to Ontario's privateness authorities to adhd further guardrails similar hazard assessments erstwhile idiosyncratic wellness accusation is involved. 

What you tin do

For patients wondering what mightiness beryllium happening with their wellness data, Hardcastle said commencement by asking your session for its privateness policy. Beyond that, she said immoderate issues tin beryllium reported to a privateness commissioner and acrophobic patients tin propulsion legislators to update privateness laws.

LISTEN | How your aesculapian records could beryllium for sale: 

"If they're proceeding from galore members of the nationalist that this is thing they're acrophobic about, that whitethorn motivate them to look into this further," she said.

Family doc Dr. Danyaal Raza successful Toronto said the study's "stark and dramatic" findings should promote patients astatine private, for-profit clinics to inquire immoderate hard questions truthful they tin beryllium arsenic informed arsenic possible. 

As past seat of Canadian Doctors for Medicare, Raza sees this arsenic different hazard that comes with backstage companies delivering wellness care. Legislative changes are portion of the solution, on with further attraction paid to superior care, helium said.

"What we request to bash to lick the superior attraction situation is enactment guardant solutions that enactment patients first, and not profits."