商业化个人健康信息:对描述加拿大专有初级保健数据库的文件进行批判性定性内容分析
Sheryl Spithoff1,2,3, Quinn Grundy4
1Department of Family and Community Medicine, University of Toronto, Toronto, ON, Canada.
International journal of health policy and management
|August 14, 2023
概括
商业数据经纪人从专有数据库中的患者数据中创造价值,特别是对于制药公司来说. 这项研究强调了隐私风险,并建议公共数据存储库与监督作为解决方案.
科学领域:
- 医疗信息学 医疗信息学
- 数据科学数据科学数据科学
- 公共卫生政策 公共卫生政策
背景情况:
- 商业数据经纪人将广泛的初级保健患者数据汇总到专有数据库中.
- 这些患者记录的收集和利用引发了关于数据价值构造和影响的关键问题.
研究的目的:
- 批判性地分析实体用来构建专有患者数据库价值的方法.
- 讨论这些敏感健康记录的收集和使用带来的更广泛影响.
主要方法:
- 对公开可用的文件进行了批判性的定性内容分析.
- 解释性主题内容分析涉及从2013年至2021年25份文件的诱导编码.
主要成果:
- 专有数据库的价值是广泛的,详细的患者级数据,对于药品监管批准,营销和了解医生行为的有用.
- 文件声称改善了患者的健康益处,同时承认隐私风险,表明数据实用性和隐私之间存在紧张关系.
- 这些数据库被定位为具有社会合法性和价值,特别是对制药行业来说.
结论:
- 专有患者数据库对患者的隐私构成风险,并可能促进有问题的药物推广.
- 建议扩大公共数据存储库,以强有力的治理和外部监管监督.
- 解决数据实用性和患者隐私之间的紧张关系对于负责任的数据管理至关重要.
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