在瑞士分享健康数据的瓶是什么? 面试是一种研究面试的方法
Kelly E Ormond1, Sabine Bavamian2, Claudia Becherer3,4
1D-HEST, Health Ethics and Policy Lab, ETH-Zurich, Zurich, Switzerland.
Swiss medical weekly
|April 5, 2024
概括
在瑞士,医疗数据共享的障碍主要是物流和流程相关的,而不是技术上的. 解决这些问题需要更清晰的法律框架,更好的教育和可持续的基础设施投资,以促进数据访问文化.
科学领域:
- 医疗信息学 医疗信息学
- 医学研究 医学研究
- 数据治理数据治理
背景情况:
- 为了研究而分享健康数据至关重要,但面临着实际实施的挑战.
- 瑞士卫生数据共享的具体瓶在很大程度上仍未被描述.
研究的目的:
- 识别和评估法律,道德和后勤障碍在瑞士的健康数据共享.
- 了解参与健康数据交换的关键利益相关者的观点.
主要方法:
- 与17个主要利益相关者 (法律专家,数据保护官,研究人员等) 进行了半结构化采访. 在瑞士个性化健康网络生态系统中.
- 利用诱导编码来分析采访成绩单,并识别反复出现的主题和瓶.
主要成果:
- 受访者将围绕数据传输的流程和系统,而不是数据传输本身,作为主要的瓶.
- 虽然瑞士个性化健康网络模板和瑞士一般同意程序提高了效率,但后勤和数据质量问题仍然存在.
- 突出了围绕国际数据共享,数据所有权,不一致的同意实施和匿名化定义的法律不确定性. 参与者强调需要向数据共享和数据访问的文化转变.
结论:
- 促进瑞士的数据访问文化需要法律澄清和加强对数据共享流程的教育.
- 对可持续基础设施和资源的投资对于支持有效的健康数据共享至关重要.
- 需要文化转变,将数据共享视为需要持续支持和人员的多步骤过程.
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