The Primary Care Medical Record Industry in Canada and Its Data Collection and Commercialization Practices.

IMPORTANCE

Massive volumes of health data flow to commercial data brokers worldwide, yet little empirical research has examined how this industry functions and the implications for patients.

OBJECTIVE

To describe and analyze the primary care medical record industry in Canada and its data collection and commercialization practices.

DESIGN, SETTING, AND PARTICIPANTS: This qualitative study of the Canadian primary care health data industry used situational analysis, a grounded theory methodology. Data sources included semistructured interviews of individuals affiliated with the commercial health data industry from May 2022 to May 2023 and publicly available documents. Data were analyzed from May 2022 to May 2024.

MAIN OUTCOMES AND MEASURES

Individual semistructured interviews and relevant publicly available documents were analyzed to gain an understanding of data collection and commercialization practices in the primary care record industry. The analysis involved a continuous and iterative process of data collection and analysis, theoretical sampling, data-driven coding, and creation of theoretical concepts.

RESULTS

A total of 19 interviews were conducted and 22 documents were sampled. Study participants described the primary care medical record industry in Canada as consisting of complex reciprocal relationships between commercial health data brokers, physicians, for-profit chains of primary care clinics, and pharmaceutical companies. In an emerging vertically integrated business model, the data broker brought the primary care clinics and physicians in house as a clinical subsidiary, thus obtaining more control over clinical practices. Participants understood the primary care medical record industry as having potential to transform patient care, but-because of financial considerations-also tied to pharmaceutical industry interests. According to participants, patients were not involved in decisions related to how their records were collected and used.

CONCLUSIONS AND RELEVANCE

This qualitative study found that each entity within the Canadian primary care medical record industry contributes to, and benefits from, the conversion of patient medical records into commercial assets. The industry's activities reflect the pharmaceutical companies' interests. Patients are notably absent from decision-making; thus, the industry's activities may not reflect their values or interests.