Implementation report on pioneering federated data access for the German National Emergency Department Data Registry

Abstract

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.