Sovereignly Donating Medical Data as a Patient: A Technical Approach

Data is the new asset of the 21st century, and many new business models are based on data. However, data is also needed in the medical research domain, such as in the procedure of applying new machine learning methods for gaining new medical findings. Furthermore, the hurdle arises that medical data comprises personal data, and thus, it requires particular care and protection. Hence, patients must consent to the data donation process for general medical research but without selecting specific research projects. We argue that patients must gain more influence in the data donation process to cover this lack of data sovereignty. Therefore, we developed a concept and implementation empowering patients to make sovereign decisions about donating their medical data to specific medical research projects. Our work comprises concepts of the Medical Informatics Initiative, International Data Spaces, and MY DATA Control Technologies with new specific elements combining these components. This approach of patient empowerment enables a new kind of data sovereignty in the medical research domain.