A recent publication by Baumgart and Kvedar in the renowned journal npj Digital Medicine emphasises that Germany and Europe are taking on a global pioneering role in digital medicine and the application of Artificial Intelligence with innovative strategies for sharing health data.
The authors refer to the publication by Bienzeisler et al. The study described there shows how federated access to emergency data already works today. Specifically, the AKTIN emergency admission register is mentioned as a lighthouse project that makes 7.9 million cases from emergency care available for research in the form of structured data sets with around 80 items each - decentralised and in compliance with the high standards of data protection. Around two million more cases are added every year.
The authors also discuss the Medical Informatics Initiative (MII), as part of which Data Integration Centres (DIC) have been established at all academic medical centres. The DIC and the AKTIN emergency admission register are part of the Network of University Medicine (NUM), which has been building infrastructures for data-based research throughout Germany since 2020. The NUM infrastructure enables healthcare data to be made available across locations in an interoperable and data protection-compliant manner. Other successful NUM Reseach Infrastructures include RACOON (NUM platform for imaging data) and NATON (NUM platform for pathology and autopsy data) with the National Autopsy Registry (NAREG). The MII, NUM and AKTIN have been contributing to the harmonisation and use of routine clinical data in research for years. The platforms established there create a robust, trustworthy basis for the utilisation of health data at national level - and are therefore central building blocks for the European data future.
With the launch of the Electronic Patient Record as a national health data infrastructure, research with health data is taking on a new dimension: pseudonymised data from around 75 million people with statutory health insurance will be accessible for research in future - a milestone for data-driven care, precision medicine and digital innovations. But the focus must be on the future: In March, the EU launched the European Health Data Space (EHDS). The aim of the EHDS is to enable secure and fair cross-border access to electronic health data across Europe - for citizens as well as for research, politics and public health. With the initiatives of the NUM, the MII and the Health Data Laboratory, Germany is in an excellent position to take on a leading role here.
For the next stage of development, however, it is crucial to further strengthen the integration of healthcare and research data. The focus here must be on data quality, interoperability and specific potential uses for digital applications - be it for clinical decision support, AI models or personalised therapies. This is the only way to turn data into sustainable medical progress.
On the study by Bienzeisler et al.