Germany's Approach for the Secondary Use of Federated Real-World Data in the German Portal for Medical Research Data
Kleinert P, Gebhardt M, Buckow K, Gründner J, Ganslandt T, Prokosch HU, Semler SC (2024)
Publication Type: Conference contribution
Publication year: 2024
Journal
Publisher: IOS Press BV
Book Volume: 316
Pages Range: 1704-1708
Conference Proceedings Title: Studies in Health Technology and Informatics
Event location: Athens, GRC
ISBN: 9781643685335
DOI: 10.3233/SHTI240751
Abstract
In the light of big data driven clinical research, fair access to real world clinical health data enables evidence to improve patient care. Germany's healthcare system provides an abundant data resource but unique challenges due to its federated nature, heterogeneity and high data-protection standards. The Medical Informatics Initiative (MII) developed concepts that are being implemented in the German Portal for Medical Research Data (FDPG) to grant access to distributed data-sources across state borders. The portal currently provides access to more than 10 million patient resources containing hundreds of millions of laboratory parameters, diagnostic reports, administered medications, procedures and specimens. Upcoming datasets include among others oncological data, molecular analysis results and microbiological findings. Here, we describe the philosophy, implementation and experience behind the framework: standardized access processes, interoperable fair data, software for in depth feasibility requests, tools to support researchers and hospital stakeholders alike as well as transparency measures to provide data use information for patients. Challenges remain to improve data quality and automatization of technical and organizational processes.
Authors with CRIS profile
Julian Gründner
Lehrstuhl für Medizinische Informatik
Thomas Ganslandt
Medizinisches Zentrum für Informations- und Kommunikationstechnik (Medizinisches IK-Zentrum, MIK)
Hans-Ulrich Prokosch
Lehrstuhl für Medizinische Informatik
Involved external institutions
Germany (DE)How to cite
APA:
Kleinert, P., Gebhardt, M., Buckow, K., Gründner, J., Ganslandt, T., Prokosch, H.-U., & Semler, S.C. (2024). Germany's Approach for the Secondary Use of Federated Real-World Data in the German Portal for Medical Research Data. In John Mantas, Arie Hasman, George Demiris, Kaija Saranto, Michael Marschollek, Theodoros N. Arvanitis, Ivana Ognjanovic, Arriel Benis, Parisis Gallos, Emmanouil Zoulias, Elisavet Andrikopoulou (Eds.), Studies in Health Technology and Informatics (pp. 1704-1708). Athens, GRC: IOS Press BV.
MLA:
Kleinert, Philip, et al. "Germany's Approach for the Secondary Use of Federated Real-World Data in the German Portal for Medical Research Data." Proceedings of the 34th Medical Informatics Europe Conference, MIE 2024, Athens, GRC Ed. John Mantas, Arie Hasman, George Demiris, Kaija Saranto, Michael Marschollek, Theodoros N. Arvanitis, Ivana Ognjanovic, Arriel Benis, Parisis Gallos, Emmanouil Zoulias, Elisavet Andrikopoulou, IOS Press BV, 2024. 1704-1708.
BibTeX: Download