Spithoff Sheryl, Vesely Leslie, McPhail Brenda, Rowe Robyn K, Mogic Lana, Grundy Quinn
Department of Family and Community Medicine, University of Toronto, Toronto, Ontario, Canada.
Women's College Hospital, Toronto, Ontario, Canada.
JAMA Netw Open. 2025 May 1;8(5):e257688. doi: 10.1001/jamanetworkopen.2025.7688.
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.
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.
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.
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.
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.
大量健康数据流向全球各地的商业数据经纪商，但很少有实证研究考察该行业的运作方式及其对患者的影响。
描述和分析加拿大的初级保健医疗记录行业及其数据收集和商业化做法。
设计、背景和参与者：这项对加拿大初级保健健康数据行业的定性研究采用情境分析这一扎根理论方法。数据来源包括2022年5月至2023年5月对商业健康数据行业相关人员的半结构化访谈以及公开可得文件。数据于2022年5月至2024年5月进行分析。
对个人半结构化访谈和相关公开可得文件进行分析，以了解初级保健记录行业的数据收集和商业化做法。分析涉及数据收集与分析、理论抽样、数据驱动编码以及理论概念创建的持续迭代过程。
共进行了19次访谈，抽取了22份文件。研究参与者将加拿大的初级保健医疗记录行业描述为商业健康数据经纪商、医生、盈利性初级保健诊所连锁以及制药公司之间复杂的相互关系。在一种新兴的垂直整合商业模式中，数据经纪商将初级保健诊所和医生纳入旗下作为临床子公司，从而对临床实践获得更多控制权。参与者认为初级保健医疗记录行业有潜力改变患者护理，但由于财务考量，也与制药行业利益相关。据参与者称，患者未参与与其记录的收集和使用相关的决策。
这项定性研究发现，加拿大初级保健医疗记录行业内的每个实体都对将患者医疗记录转化为商业资产有所贡献并从中受益。该行业的活动反映了制药公司的利益。患者明显未参与决策；因此，该行业的活动可能未反映他们的价值观或利益。
