The EMPOWER-U research project investigates how the meta-consent model can strengthen informational self-determination for patients, making their medical health data available for research purposes. The objective is to empower patients to make a reflected and informed decision on sharing their data by balancing the implications, opportunities, and risks of health data research and peoples’ individual circumstances, values, and needs.

EMPOWER-U aims to explore the practical implementation of the meta-consent model and address potential concerns regarding its complexity. To achieve this, the project examines technical and legal frameworks and develops strategies for successful implementation. A particular focus is placed on strengthening informational self-determination, which is achieved through two approaches: First, patients are participatively involved throughout the design process. Second, the effectiveness of various user interfaces for meta-consent is studied in relation to patients’ perceived sense of self-determination.

In the long term, EMPOWER-U seeks to establish a balanced relationship between public research interests and individual privacy. The project aims to open new perspectives for alternative consent models in evidence-based medicine and ultimately contribute to advancements in medical research by enabling patients to share their data confidently and autonomously.

The project is funded by the Federal Ministry of Education and Research (BMBF).

Project partners:

• Charité Universitätsmedizin Berlin | Berlin Institue of Health: Arbeitsgruppe Medizininformatik | Prof. Dr. Fabian Prasser
• Charité Universitätsmedizin Berlin | Medizinische Klinik mit Schwerpunkt Psychosomatik | Prof. Dr. Matthias Rose
• Universität Augsburg | Bürgerliches Recht, Haftungsrecht und Recht der Digitalisierung | Prof. Dr. Benedikt Buchner
• Brainlab AG