全球共享健康数据的意愿很高,但隐私,同意和透明度至关重要,
Quita Olsen1, Amalie Dyda2, Leanna Woods1
1Queensland Digital Health Centre, Centre for Health Services Research, The University of Queensland, Brisbane, QLD, Australia.
NPJ digital medicine
|August 23, 2025
概括
在全球范围内,77%的人愿意共享他们的健康数据用于次要用途,但隐私问题仍然存在. 未来的研究应侧重于公众教育和多样化的群体,以增加数据共享的信任.
科学领域:
- 医疗服务研究
- 公共卫生
- 数据科学
背景情况:
- 医疗保健系统面临越来越大的压力,需要创新的数据利用策略.
- 重复使用常规收集的健康数据有可能改善患者的治疗结果和医疗效率.
- 公众愿意为次要目的共享个人健康信息是数据再利用举措的关键因素.
研究的目的:
- 量化评估全球公众愿意共享二次使用的健康数据.
- 确定与分享健康数据的意愿相关的人口和感知因素.
- 综合现有关于公众对健康数据共享的态度的证据.
主要方法:
- 对2020年1月以来发表的研究进行了五个电子数据库的系统文献搜索.
- 包含的研究量化地检查了公众愿意为次要目的共享健康数据的情况.
- 数据提取集中在意愿百分比,人口变量和与数据共享相关的看法上.
主要成果:
- 其中包括65篇符合条件的文章,报告公众愿意分享健康数据的范围广泛 (24-100%).
- 77% (95% CI: 71-82%) 的受访者表示愿意分享,主要来自高收入国家.
- 参与者的关键问题包括数据隐私,知情同意和数据使用的透明度.
结论:
- 大多数公众表示愿意为次要目的共享健康数据,但对隐私和透明度存在重大担忧.
- 调查结果强调需要开展有针对性的公众教育活动,并开发可验证的测量数据共享意愿的工具.
- 未来的研究应优先评估不同群体和低收入群体的意愿, 以确保数据的公平利用.
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