SouveMed

Small and medium-sized enterprises (SMEs) require high-quality and comprehensive medical data to develop applications and services. In the SouveMed project (trustworthy data stewardship model for sovereign management and effective use of medical data in sleep research), a transparent and trustworthy data trust model was developed that allows patients to share clinical data securely and voluntarily as a prerequisite for researching rare diseases, for example. This creates a legally secure and ethically acceptable framework that strengthens the acceptance and marketability of such solutions. The medical data remains decentralized at the locations where it is collected. Researchers can submit data requests via a central platform. The platform coordinates decentralized data provision, supports contract negotiations between data providers and users, and provides a protected analysis environment. This avoids the ethically questionable linking of medical treatment and data use – an essential contribution to establishing new research infrastructures and data ethics standards.