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In the last week before the summerbreak of the German Bundestag, the Committee for Education, Research, and Technology Assessment held a public consultation on the topic "Data use in health research". On July 5 Professor Juliane Fluck, NFDI4Health spokesperson and NFDI representative in the field of health, was invited as an expert. 

Data use in health research
Dome of the German Bundestag. (c) German Bundestag /Thomas Trutschel / photothek

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