关于数字健康数据共享的公众偏好:在12个欧洲国家进行离散选择实验研究
Roberta Biasiotto1,2, Jennifer Viberg Johansson3, Melaku Birhanu Alemu4,5
1Institute for Biomedicine (Affiliated Institute of the University of Lübeck), Eurac Research, Bolzano, Italy.
Journal of medical Internet research
|November 23, 2023
概括
欧洲公众对数字健康数据共享的偏好强调透明度和同意. 调查结果强调需要数据治理解决方案,使个人能够在各种环境中控制他们的健康信息.
科学领域:
- 数字健康数字健康
- 生物伦理学生物伦理学
- 公共卫生政策 公共卫生政策
背景情况:
- 新技术使得健康数据的广泛收集和多样化使用成为可能.
- 公共接受数字健康数据共享对于欧洲数据治理政策至关重要.
研究的目的:
- 调查欧洲居民对数字健康数据共享的偏好.
主要方法:
- 在12个欧洲国家的5015名参与者中进行了一项离散选择实验调查.
- 潜在类模型分析了基于数据收集者,用户,理由,同意和审查过程属性的偏好.
- 计算了聚合和区域数据集的属性重要性.
主要成果:
- 透明度和同意是可接受的健康数据共享的最关键因素.
- 确定了四种不同的偏好模式,在整个欧洲都有显著的异质性.
- 可接受的数据共享涉及国家当局或研究机构,有知情同意和监督;商业用途是最不能接受的.
结论:
- 透明度和监督对于欧洲的健康数据共享至关重要.
- 偏好的异质性需要灵活的治理,使个人能够控制其数字健康数据.
- 动态的同意模型和监督机制可以支持协调的欧洲健康数据使用.
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