关于为德国国家紧急情况部门数据注册处开创联邦数据访问的实施报告
Jonas Bienzeisler1, Alexander Kombeiz2, Saskia Ehrentreich3
1Institute of Medical Informatics, Medical Faculty of the RWTH Aachen University, Aachen, Germany. jbienzeisler@ukaachen.de.
NPJ digital medicine
|February 11, 2025
概括
联合数据访问授权确保电子健康记录安全共享,保护数据持有者的利益. 这个系统有效地管理了全国医学研究数以百万计的记录.
科学领域:
- 数字健康数字健康
- 医疗信息学 医疗信息学
- 数据安全 数据安全
背景情况:
- 持续访问电子健康记录 (EHR) 对医学进步至关重要.
- 数据共享倡议在平衡数据访问与数据所有者的隐私和控制方面面临挑战.
- 联合数据访问授权提供了一种去中心化的方法来管理数据访问,同时保持本地控制.
研究的目的:
- 报告联邦数据访问授权系统的实施和有效性.
- 评估系统在管理大规模研究网络中的数据访问方面的性能.
- 评估该系统作为全球数据共享倡议的模型的潜力.
主要方法:
- 在德国国家紧急情况部门数据登记处实施联合数据访问授权系统.
- 分析了2017年至2024年的数据,涵盖了58个急救部门的全国性研究网络.
- 评估数据访问查询授权时间,数量和完成率.
主要成果:
- 该系统可轻松访问超过790万份健康记录.
- 75%的数据访问查询在15天内获得授权.
- 查询量显著增加,到2024年完成率为86%.
结论:
- 联合数据访问授权有效地平衡了数据共享和数据持有者的利益.
- 实施的系统展示了一个可行的蓝图,用于安全和高效的数字健康数据共享.
- 该系统支持可扩展的实时数据访问,用于研究目的.
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