The data donation pass is an innovative way for citizens taking care of their personal health. It enables easy sharing of personal health and fitness data with known third-parties, such as family members, physicians, and selected research projects, whilst keeping full control of personal data.
Users of the data donation pass app define their health interests in their personal online profile. Based on these interests, relevant information and projects are carefully compiled and forward to the users keeping their identity private.
Based on their personal interests, citizens can chose to participate and support individually selected projects and start by a single click. After indicating their interest to donate data for a specific use case or project, all relevant medical details are forwarded to their trusted medical doctor, e.g. the general practitioner, who takes care of the informed consent. Thus, the user can raise any open questions and understand eventual implication of her/his participation.
Participants in projects receive regular updates about how and how often their donated data was used for what purpose. Thus, they can better understand how their donation contributed to a concrete project. Nonetheless, users can redraw their personal consent to donate data at any point in time. As a result, participants keep full control of the use of data.
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The following links provide additional content-related information.
- Slides of the 2019 Clinical Trials Conference available
- Introducing the Data Donation Pass
- Die digitale Transformation mitgestalten — Der Datenspendeausweis: Souveräner Umgang mit persönlichen Gesundheitsdaten
- Datenspendeausweis für Bürger: Ein Plädoyer für mündige Patienten, die die eigenen Gesundheitsdaten am besten verstehen.