Create a health data foundation for research
The FDP wants to found a public-law foundation in Hesse that securely stores voluntarily donated health data and releases it for research. This is meant to give research on new treatments and drugs easier access to reliable data.
Researchers need good health data. The FDP wants to create a foundation for this. Patients can donate their data if they want. The foundation protects the data and gives it to researchers.
The data is to be stored in anonymized or pseudonymized form and opened only to an authorized group of users. The platform justifies the foundation by noting that health data is especially sensitive and patients expect a high level of protection. In the FDP's view, differing research clauses in the states' laws make cross-state projects harder. It therefore wants to push in the Bundesrat for more uniform rules on research data.
Show the original quote (page 59)
„Die Stiftung des öffentlichen Rechts verwahrt freiwillig gespendete Gesundheitsdaten von Patientinnen und Patienten anonymisiert oder pseudonymisiert“Translation: The public-law foundation stores voluntarily donated health data from patients in anonymized or pseudonymized form
Placement
This point touches none of the axes.