Department of Family and Community Medicine, University of Toronto, Toronto, ON, Canada.
Department of Family and Community Medicine, Women's College Hospital, Toronto, ON, Canada.
Int J Health Policy Manag. 2023;12:6938. doi: 10.34172/ijhpm.2023.6938. Epub 2023 May 2.
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.
商业数据经纪人在专有数据库中积累了大量初级保健患者数据。我们的研究目的是批判性地分析参与这些记录的收集和使用的实体如何构建这些专有数据库的价值。我们还讨论了收集和使用这些数据库的影响。
我们使用公开可用的文件进行了批判性的定性内容分析，这些文件描述了创建和使用包含加拿大初级保健患者数据的专有数据库。我们确定了相关的商业数据经纪人，以及参与收集数据或使用这些数据库数据的实体。我们从与这些实体相关的文件中采样，这些文件描述了专有数据库的任何方面的收集、处理和使用。我们使用结构化数据工具从每个文件中提取数据。我们通过对文件和提取的数据进行归纳式编码来进行解释性主题内容分析。
我们分析了 2013 年至 2021 年间制作的 25 份文件。这些文件主要针对制药行业，以及股东、学术界和政府。这些文件通过描述广泛、亲密、详细的患者级数据持有量来构建专有数据库的价值。他们提供了制药公司如何将数据库用于监管批准、营销和了解医生行为的例子。这些文件通过声称改善患者健康来更广泛地构建这些数据的价值，同时解决对隐私的风险。一些文件提到了患者隐私和数据效用之间的权衡，这表明这些考虑因素可能存在冲突。
我们分析中的文件将专有数据库定位为具有社会合法性和价值的，特别是对制药公司而言。然而，这些数据库可能对患者隐私构成风险，并导致有问题的药物促销。解决方案包括扩大具有适当治理和外部监管监督的公共数据存储库。
