Millions of Canadians’ health data available for sale to pharmaceutical industry, study shows
The process of visiting a doctor involves divulging personal information about your health, medical history, and prescriptions. This information is recorded in your medical record, which is meant to be confidential and secure. However, a recent study conducted by researchers at Women’s College Hospital in Toronto has uncovered a concerning trend – private companies are accessing parts of this data and selling it to pharmaceutical companies without the patients’ consent.
Dr. Sheryl Spithoff, the lead author of the study, emphasized the need for transparency in how patient data is handled. The study, published in JAMA Network Open, revealed that a network of for-profit primary care clinics, physicians, commercial data brokers, and pharmaceutical companies collaborate to convert patient medical records into commercial assets. These assets are then used to benefit the pharmaceutical industry without the patients’ knowledge or approval.
Two models were identified in the study. In one model, a private clinic sells de-identified data to an external company, which then offers it to pharmaceutical clients for analysis. In the other model, the clinic is owned by the company collecting the data, granting them direct access to patient information. Patients are excluded from decisions regarding the use of their data, highlighting the lack of oversight in this process.
Experts have raised concerns about the potential implications of these practices on patient care in Canada. Matthew Herder, director of the Health Justice Institute at Dalhousie University, warned that these data-sharing models could prioritize pharmaceutical interests over patient well-being and increase healthcare costs. The outdated privacy laws in Canada are ill-equipped to address these modern challenges, according to Lorian Hardcastle, an assistant law professor at the University of Calgary.
As the healthcare system transitions to electronic health records managed by private entities, there is a pressing need to update privacy legislation to safeguard patient information effectively. The Office of the Privacy Commissioner of Canada acknowledged the importance of protecting health data and advocated for stricter regulations around the use and sale of de-identified data.
Patients are encouraged to inquire about their clinic’s privacy policy and report any concerns to privacy commissioners. Legislative changes and increased attention to primary care are essential to address the risks associated with private companies in healthcare delivery. Dr. Danyaal Raza, a family doctor in Toronto, emphasized the need to prioritize patients over profits to resolve the primary care crisis.
In conclusion, the study’s findings underscore the urgency of updating privacy laws and implementing greater transparency in handling patient data. By empowering patients with knowledge and advocating for legislative changes, we can ensure that healthcare remains patient-centered and ethical.
