In her statement, Prof. Dr. Fluck mainly referred to the NFDI4Health demands on health research. These include:
- A central trust center at the federal level that enables privacy-compliant processes for pseudonymization and data pooling (NFDI4Health has prepared a white paper on this topic)
- Legal and organizational foundations that enable easy access/application for decentralized available research data
- Harmonization of legal foundations at the federal level to avoid dependencies on state-specific legislation
- Coordination process for standards, especially metadata, interfaces but also for requesting
- Data protection compliant standardized publication of all health data that can be reused for research
In addition, Prof. Fluck presented solutions to the committee on which the various NFDIs in the health sector and NFDI4Health in particular are working. These include:
Privacy-compliant data publication workflow for personal health data
- Generic metadata in national and international coordination
- Publication access conditions/licenses
- The German Health Study Hub search portal
Central application for data access
- Building on the German Health Research Data Portal of the Medical Informatics Initiative
- Exchange with research data centers aiming to standardize processes
Data access and analysis
- Legal requirements and data protection measures for discoverability and reusability of data and data sets
- Establishment of distributed analysis infrastructures
- Record Linkage
- Exploration of synthethic data
The discussion viewed in the media library of the German Bundestag: https://www.bundestag.de/dokumente/textarchiv/2023/kw27-pa-bildung-51-sitzung-955022