TORONTO, ON – May 5, 2025 – A new study led by Dr. Sheryl Spithoff, The Primary Care Medical Record Industry in Canada and Its Data Collection and Commercialization Practices, at Women’s College Hospital uncovers how Canada’s primary care medical record industry contributes to, and profits from, the conversion of patient health data into commercial assets.
Published in JAMA Network Open, the qualitative study draws on 19 interviews with insiders from the Canadian for-profit primary care medical record industry and an analysis of 22 publicly available documents such as data broker websites, government websites, and academic papers.
“We launched this study because we knew data brokers were collecting patient data internationally and wanted to investigate whether the same was happening in Canada,” says Dr. Sheryl Spithoff, lead author, family physician and scientist at Women’s College Hospital. “We identified two commercial data brokers, each claiming access to between one and two million primary care patient records, operating in collaboration with chains of for-profit clinics and physicians.”
Key Findings:
- Complex Reciprocal Relationships: Study participants described the Canadian primary care medical record industry as a network of complex, reciprocal relationships involving health data brokers, physicians, for-profit chains of primary care clinics, and pharmaceutical companies.
- Growing Pharmaceutical Influence: Pharmaceutical companies were identified as the primary clients of the data brokers, raising concerns about increasing pharmaceutical industry influence over clinical decision-making and patient care.
- Emergence of a Vertically Integrated Model: One major data broker owned a network of for-profit primary care clinics in Canada, enabling direct access to patient records. Pharmaceutical companies sponsored the data broker to develop algorithms to identify patients who may be eligible for their drug treatments. With physician consent, the data broker mined the medical records and provided the physicians with a list of relevant patients along with drug treatment recommendations.
- Patients Absent from Decision-Making: Study participants reported that patients were not involved in decisions about how their health information was collected and used by the data brokers, highlighting serious concerns around informed consent, transparency and public trust.
“One of the main concerns is that this practice doesn’t align with patient wishes and values,” shares Dr. Spithoff. “Patients have shared in other surveys and interviews that they are reluctant to share their health data with for-profit companies, particularly without clear consent. Patients expect transparency, oversight and assurance that their health data is being used for the public good.”
Dr. Spithoff concludes, “Stronger legislation and regulation may be needed to ensure that the use of health data better reflects the interests and values of the patients, communities and society.”
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Sarah Kim
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Women’s College Hospital
sarah.kim@wchospital.ca
About Women’s College Hospital
For more than 100 years, Women’s College Hospital (WCH) has been developing revolutionary advances in healthcare. Today, WCH is a world leader in health equity and Canada’s leading academic ambulatory hospital. It focuses on delivering innovative solutions that address Canada’s most pressing issues related to population health, patient experience and system costs. A multidisciplinary research institute, the Women’s College Research and Innovation Institute is one of only a few hospital-based research institutes worldwide to focus on health equity, leading innovative, high-impact health research that changes practice, changes policy, and changes lives. www.womenscollegehospital.ca