实施欧洲健康数据空间:对来自23个国家的健康数据专家期望的定性研究
Patricia Cervera de la Cruz1, Teodora Lalova-Spinks2, Mahsa Shabani3
1Faculty of Law and Criminology, Ghent University, Belgium.
Health policy (Amsterdam, Netherlands)
|September 12, 2025
概括
欧洲健康数据空间 (EHDS) 为二次健康数据使用提供了新的机会,但也带来了实施挑战. 专家强调需要投资和激励来协调各种系统以有效共享数据.
科学领域:
- 医疗信息学 医疗信息学
- 数据治理数据治理
- 欧洲卫生政策 欧洲卫生政策
背景情况:
- 欧洲健康数据空间 (EHDS) 正在接近正式采用,这引发了关于健康数据的二次使用的关键问题.
- 随着EHDS框架的发展,现有的健康数据再利用框架面临实施障碍.
研究的目的:
- 调查健康数据专家关于即将实施的欧洲健康数据空间 (EHDS) 的观点和期望.
- 根据EHDS,确定与健康数据的二次使用相关的预期好处和挑战.
主要方法:
- 与23个欧洲国家的健康数据专家进行了半结构化采访.
- 采用诱导性内容分析来系统地分析面试数据并确定新出现的主题.
主要成果:
- 预计EHDS将通过明确的法规简化二次健康数据的使用,促进竞争力和跨境数据共享.
- 确定的实施挑战包括各成员国之间不一致的解释,监管重叠,访问费的增加以及数据误导的风险.
- 强调将不同的国家医疗保健系统统一到单一数据框架中的复杂性.
结论:
- 需要大量投资来解决整个欧盟的健康数据和数字健康系统的异质性.
- 激励对于确保利益相关者积极参与至关重要,特别是在已建立数据共享机制的地区.
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