数据驱动的研究和医疗保健:公众信任,数据治理和NHS
Angeliki Kerasidou1, Charalampia Xaroula Kerasidou2
1Ethox Centre, Oxford Population Health (Nuffield Department of Population Health, Big Data Institute, Li Ka Shing Centre for Health Information and Discovery Oxford, University of Oxford, Oxford, UK. angeliki.kerasidou@ethox.ox.ac.uk.
BMC medical ethics
|July 14, 2023
概括
公众对国家卫生服务 (NHS) 的信任受到其与私营公司的数据共享实践的挑战. 这种转向"健康与财富"议程的问题质疑NHS.
科学领域:
- 卫生政策和治理 卫生政策和治理
- 生物伦理学和公众信任
- 健康数据管理和创新
背景情况:
- 公众信任对于接受医疗保健数据共享和采用人工智能等新技术至关重要.
- 尽管英国国家卫生服务 (NHS) 受到高度信任,但公众的信任并没有扩展到其数据共享实践,特别是与私营部门的数据共享实践.
- 近年来,NHS对研究和创新的数据共享增加,引发了人们对公众信任的担忧.
研究的目的:
- 调查公共不信任的具体原因,当NHS数据与营利性公司共享用于研究和创新时.
- 在民主框架内分析公众与NHS之间的关系,重点关注义务和期望.
- 评估当前的NHS数据管理和私营部门的合作是否与建立的基于信任的关系保持一致.
主要方法:
- 在公共机构的背景下,利用政治理论来定义和理解公众的信任.
- 检查医疗保健数据化和"健康与财富"议程对NHS制度性质的影响.
- 分析NHS数据共享实践与公众期望和民主原则的协调.
主要成果:
- 医疗保健的日益增长的数据化和"健康与财富"议程意味着NHS机构身份的根本变化.
- 这种转变挑战了对NHS公共利益使命的传统理解,从而削弱了公众的信任.
- 在数据共享方面与营利性实体的合作对公众对NHS的信任构成了重大挑战.
结论:
- 解决公众信任的侵蚀需要对NHS不断变化的作用的好处和缺点进行彻底的理论和经验评估.
- 开放的公开对话对于确定应该指导NHS等公共机构的核心价值观至关重要.
- 将NHS的公共服务使命与商业数据共享倡议相协调,对于重建和维护公众信任至关重要.
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