分享患者数据是什么意思? 达什:隐私和道德挑战的数据共享层次结构
Richard Schreiber1,2, Ross Koppel3,4, Bonnie Kaplan5
1Information Services, Penn State Health, Hershey, Pennsylvania, United States.
Applied clinical informatics
|July 25, 2024
概括
临床数据共享至关重要但复杂. 这项研究引入了一个分层的数据共享层次结构 (DaSH),以评估患者隐私的风险,并为更安全的数据实践提供建议.
科学领域:
- 生物伦理学生物伦理学
- 医疗信息学 医疗信息学
- 卫生政策 卫生政策
背景情况:
- 临床数据共享对于患者护理,研究和创新至关重要.
- "数据共享"一词缺乏明确的定义,包括道德,法律和社会复杂性.
- 现有的框架没有解决与数据共享相关的风险等级问题.
研究的目的:
- 制定一个层次结构,解释数据共享的风险和道德复杂性.
- 在数据共享的背景下,特别关注患者数据隐私.
主要方法:
- 对同行评审和灰色文献进行了全面的调查.
- 该等级是使用作者在生物伦理学和医疗信息学方面的综合专业知识来开发的.
主要成果:
- 创建了六个级别的分层数据共享层次结构 (DaSH),说明了对患者隐私,临床医生和组织的不断升级的风险.
- 风险从直接的患者护理和公共卫生增加到商业用途,复杂的组合和第三方网络.
- 建议包括改善同意,政策,法规,IT生物伦理和持续监测.
结论:
- 尽管数据共享至关重要,但由于技术进步,数据共享变得越来越复杂和潜在的危险.
- 可穿戴设备和AI数据库挖掘增加了与患者数据相关的范围和风险.
- 数据共享需要患者,临床医生,机构和政策制定者之间共同承担责任.
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