Research for your health: New consent model revolutionizes data access

Research for your health: New consent model revolutionizes data access

On March 19, 2025, the EMPOWER-U research project started under the leadership of the Free University of Berlin and deals with the individual release of health data. The project is funded by the Federal Ministry of Education and Research (BMBF) and aims to strengthen self-determination and transparency in the handling of sensitive health data. A central element of the project is the development of an innovative consent model called Meta-Consent.

This model allows people to determine in advance whether, how and when they want to receive consent requests. This offers flexible and differentiated control of data sharing that is based on value-oriented decisions. Loud FU Berlin The project also examines central questions about behavioral science findings as well as the technical and legal requirements for implementing the model.

Interdisciplinary collaboration

The project is interdisciplinary and brings together partners from different areas, including the Charité Universitätsmedizin Berlin, the University of Augsburg and Brainlab AG. Prof. Dr. Claudia Müller-Birn, who leads the Human-Centered Computing research group at the Free University of Berlin, emphasizes the need to improve the efficiency of future consent processes in healthcare while at the same time preserving patients' informational self-determination.

A report from BMJ addresses the ethical and regulatory challenges associated with the use of health data. The ability to store, link and analyze this data opens up new research opportunities, but at the same time raises questions: a key challenge is whether renewed informed consent is required for secondary use of data collected in the context of routine care or for specific research projects. The current focus on “big data” highlights the tensions between the interests of society and the rights of individuals.

Ethical standards and data protection

Another aspect that is crucial in the context of health data research is the strong ethical standards necessary to protect patient information. The article on Editverse highlights that the ethics of dealing with patient data have become increasingly complex. Digital health systems require a balanced approach that takes both data protection and the needs of health research into account.

The anonymization of patient data is also a central issue. The challenges of obtaining informed consent, such as language barriers and different levels of understanding, also need to be considered. Researchers are under pressure to prioritize patient rights while also seeking to harness the benefits of data analytics for medical research.

The long-term goal of the EMPOWER-U project is to enable progressive and ethically responsible handling of health data. This includes encouraging greater patient participation and developing clear and transparent consent processes. Given the rapid developments in the digital health landscape, careful handling of data use is essential to ensure both research progress and the protection of individual rights.