患者和公众愿意共享个人健康数据用于第三方或二次用途:系统审查
Rebecca Baines1, Sebastian Stevens1,2, Daniela Austin1
1Centre for Health Technology, University of Plymouth, Plymouth, United Kingdom.
Journal of medical Internet research
|March 5, 2024
概括
公众愿意为二次用途共享个人健康数据是有条件的,优先考虑隐私,安全和个人控制. 透明度和明确的好处是实现数据共享的关键,同时保护患者的利益.
科学领域:
- 数字卫生技术数字卫生技术
- 医疗信息学 医疗信息学
- 公共卫生政策 公共卫生政策
背景情况:
- 数字医疗技术的日益使用扩大了个人健康数据的收集和分析.
- 公众愿意为二次用途共享健康数据的意愿仍未得到充分探索,尤其是在数据丑闻和COVID-19之后.
研究的目的:
- 系统地审查影响公众愿意共享个人健康数据的因素,以第三方或二次用途.
主要方法:
- 在六个主要数据库 (MEDLINE,Embase,PsycINFO,CINAHL,Scopus,SocINDEX) 进行系统搜索.
- 发现的诱导主题分析,用叙事方法合成.
主要成果:
- 数据隐私,安全和管理问题是公共数据共享的主要障碍.
- 愿意分享受到数据类型,用户,信任,个人控制,反循环和感知到的好处/激励因素的影响.
结论:
- 公众对二次健康数据共享的支持是有条件的,需要透明度,个人控制和强有力的隐私/安全措施.
- 优先考虑集体利益而不是商业利益的动态同意模型是必不可少的.
- 如果未能将数据共享适应患者偏好,可能会破坏潜在的益处.
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