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

Going to the doctor can involve sharing your most personal information, including details about your health, medical history and prescriptions. 

It all ends up in your medical record — but a new study by researchers at Women's College Hospital in Toronto found that in some cases, private companies are accessing parts of that data and selling it to pharmaceutical companies. 

"This is really an area where we need transparency," said the study's lead author, Dr. Sheryl Spithoff.

The study, published in JAMA Network Open, examined how the medical record industry works in Canada and how patient data flows between different private entities.  

Through a series of 19 interviews, the researchers concluded "chains of for-profit primary care clinics, physicians, commercial data brokers and pharmaceutical companies ... work together to convert patient medical records into commercial assets."

Those assets, the study said, are then used to "further the interests of the pharmaceutical companies."

Spithoff and her colleagues identified two different models. In one, a private clinic sells data to an outside company, with personal information like names and birth dates removed. The company then offers to sell or analyze that de-identified information for its clients in the pharmaceutical industry. 

In the other model, the clinic is a subsidiary of the company collecting the data, giving that company even more direct access to patient information. 

The study said patients were not included in decisions about how their data was used. 

"We need oversight," Spithoff said in an interview.

"What we know from other surveys and interviews with patients is that this is not how they want their data handled."

The study's findings suggest these practices could give the pharmaceutical industry more influence over patient care in Canada.

Matthew Herder, director of the Health Justice Institute at Dalhousie University in Halifax, said while there may be potential for this kind of data-sharing to help patients, there is also a risk these models will push patient care in a direction that benefits pharmaceutical companies and drives up costs for health-care systems.

"All of these things are happening without any degree of transparency," Herder said. "That's why this paper is such an important paper. It's starting to bring to light what's really going on."