Commercializing Personal Health Information: A Critical Qualitative Content Analysis of Documents Describing Proprietary Primary Care Databases in Canada.

Abstract

Commercial data brokers have amassed large collections of primary care patient data in proprietary databases. Our study objective was to critically analyze how entities involved in the collection and use of these records construct the value of these proprietary databases. We also discuss the implications of the collection and use of these databases. We conducted a critical qualitative content analysis using publicly available documents describing the creation and use of proprietary databases containing Canadian primary care patient data. We identified relevant commercial data brokers, as well as entities involved in collecting data or in using data from these databases. We sampled documents associated with these entities that described any aspect of the collection, processing, and use of the proprietary databases. We extracted data from each document using a structured data tool. We conducted an interpretive thematic content analysis by inductively coding documents and the extracted data. We analyzed 25 documents produced between 2013 and 2021. These documents were largely directed at the pharmaceutical industry, as well as shareholders, academics, and governments. The documents constructed the value of the proprietary databases by describing extensive, intimate, detailed patient-level data holdings. They provided examples of how the databases could be used by pharmaceutical companies for regulatory approval, marketing and understanding physician behaviour. The documents constructed the value of these data more broadly by claiming to improve health for patients, while also addressing risks to privacy. Some documents referred to the trade-offs between patient privacy and data utility, which suggests these considerations may be in tension. Documents in our analysis positioned the proprietary databases as socially legitimate and valuable, particularly to pharmaceutical companies. The databases, however, may pose risks to patient privacy and contribute to problematic drug promotion. Solutions include expanding public data repositories with appropriate governance and external regulatory oversight.