欧洲健康数据空间:太大而无法成功?
Luca Marelli1, Marthe Stevens2, Tamar Sharon2
1Department of Medical Biotechnology and Translational Medicine, University of Milan, Milan, 20129, Italy; Centre for Sociological Research, KU Leuven, Leuven, 3000, Belgium.
欧洲健康数据空间 (EHDS) 提案旨在改善健康数据的获取和重复使用. 然而,目前的提案可能会阻碍患者控制和数据共享,需要大幅调整才能取得成功.
科学领域:
- 卫生政策 卫生政策
- 数据治理数据治理
- 欧盟法律 欧盟法律
背景情况:
- 欧盟委员会在2022年5月提出了欧洲健康数据空间 (EHDS) 的提议.
- 电子健康数据系统旨在加强公民对电子健康数据的控制,并促进跨境数据重用用于研究和创新.
- 它代表了欧盟健康数据治理的重大发展.
研究的目的:
- 批判性地分析EHDS提案对其既定目标的潜在影响.
- 确定当前EHDS条例草案中的缺陷.
- 为改进EHDS提出政策建议.
主要方法:
- 从卫生政策,法律,伦理和社会科学角度分析EHDS提案.
- 评估对患者,卫生专业人员,研究人员和社会的影响.
- 制定有针对性的政策建议.
主要成果:
- 目前的EHDS提案有可能破坏患者数据控制.
- 它可能会阻碍卫生专业人员和研究人员的工作.
- 该提案可能会侵蚀健康数据共享产生的公共价值.
结论:
- 为了实现预期的好处,需要对EHDS提案进行重大调整.
- 必须修订EHDS以加强,而不是削弱患者赋权和数据实用性.
- 提供了政策建议,以解决发现的缺陷,并确保EHDS最大限度地提高公共价值.
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