The use of health data for research - What does the population think?

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The discussion about the use of health data for research purposes in Germany has gained momentum with the introduction of the electronic patient record (EPR) on January 1, 2021. In December 2023, the Bundestag passed two laws that will automatically provide all people with statutory health insurance with an EPR from 2025, unless they actively object (opt-out). The Health Data Utilization Act also allows the data stored in the PPR to be used for charitable purposes under the same opt-out rule. But how does the population feel about data donation and the use of their health data? The Ernst Abbe University of Applied Sciences conducted a population-representative survey to clarify these questions. This Insight presents and discusses selected findings on the population's willingness to donate data, potential influencing factors, preferences, but also incentives and concerns.

Elias Kühnel is a sociologist (M.A.) and works as a research assistant at the Ernst Abbe University of Applied Sciences Jena in the project "Anonymization of personal health data through the creation of digital avatars in medicine and care" (AVATAR). His work focuses on health sociological issues with a quantitative focus.

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