Research Projects

SouveMed

Data trustee model protects use of individual health data in research

Start: 01/2022

End: 12/2023

Clinical data from studies is usually not approved for secondary use, which means it cannot be used for later research. The SouveMed project developed a trustworthy data trust model that can securely provide large amounts of data.

Small and medium-sized enterprises (SMEs) require high-quality and comprehensive medical data to develop applications and services. In the SouveMed project, 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 also 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 important contribution to the establishment of new research infrastructures and data ethics standards.

Role of the FZI

The FZI developed the information technology framework and concepts for the secure management, transfer, and storage of data within the context of a data trust model. The researchers focused on designing the data provider and data trust components, as well as their interoperability and integration with the overall system.

Various topics were examined for this purpose:

  • Mapping and control of access points and processing steps to increase data quality
  • Blockchain-based incentive systems for data release
  • Methods for recording and increasing data quality
  • Impact of different degrees of de-identification on data quality and secondary use
  • Software-based structure of a data trustee platform
  • Involvement of the data provider in the data release process for self-determined decisions about health data

Contact

Christina Erler

Deputy Head of Department
Division: Embedded Systems and Sensors Engineering

Research Focus

Applied Artificial Intelligence

In this research focus, the FZI concentrates on practical research into the key technology of Artificial Intelligence (AI). Innovative AI solutions are developed and transferred to application areas such as mobility, robotics, healthcare technology, logistics, production, and supply and disposal on behalf of our partners and customers.

Funding notice:
The SouveMed project was funded by the Federal Ministry of Research, Technology and Space.

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