Bienzeisler Jonas, Kombeiz Alexander, Ehrentreich Saskia, Otto Ronny, Schirrmeister Wiebke, Pegoraro Marco, Brammen Dominik, Puladi Behrus, Röhrig Rainer, W Majeed Raphael
Institute of Medical Informatics, Medical Faculty of the RWTH Aachen University, Aachen, Germany.
Department of Trauma Surgery, Otto von Guericke University, Magdeburg, Germany.
NPJ Digit Med. 2025 Feb 11;8(1):94. doi: 10.1038/s41746-025-01481-w.
Continuous access to electronic health records will fuel the digital transformation of medicine. For data-sharing initiatives, the challenge lies in ensuring data access aligns with the interests of data holders. Federated data access authorization, where data remains controlled locally, may offer a solution to balance these interests. This paper reports on a digital health implementation of the federated data access authorization system used in the German National Emergency Department Data Registry. Using data from 2017 to 2024, we analyzed the system's effectiveness in managing data access in a nationwide research network of 58 emergency departments. Facilitating access to more than 7.9 million records, 75% of data access queries were authorized within 15 days. The system also supports periodic queries, enabling recurring real-time access. Query volumes grew from 15 to over 23,000 by 2024, with completion rates of 86%. The system may thus serve as a blueprint for data-sharing initiatives worldwide.
持续访问电子健康记录将推动医学的数字化转型。对于数据共享计划而言,挑战在于确保数据访问符合数据所有者的利益。联合数据访问授权(数据仍在本地进行控制)或许能提供一种平衡这些利益的解决方案。本文报告了德国国家急诊科数据登记处使用的联合数据访问授权系统在数字健康领域的实施情况。利用2017年至2024年的数据,我们分析了该系统在一个由58个急诊科组成的全国性研究网络中管理数据访问方面的有效性。该系统促成了对超过790万条记录的访问,75%的数据访问查询在15天内获得授权。该系统还支持定期查询,可实现反复的实时访问。到2024年,查询量从15次增长到超过23000次,完成率为86%。因此,该系统可作为全球数据共享计划的蓝本。