The primary and secondary health markets, such as electronic health records and fitness data, currently have disconnected and proprietary systems that do not allow for the merging and secondary use of health data. As a result, citizens have limited or no access to their own health data and are unable to share it with different healthcare providers or apps.
HEALTH-X dataLOFT aims to put citizens at the center of the provision, use, and control of their own health data from the primary and secondary health markets. The health data will be integrated into a Legitimized, Open, and Federated dataLOFT platform and made accessible according to GAIA-X standards. This will enable the linking of different data domains after data release by the citizen, enabling a wide range of specific applications. The project will also develop four application examples, known as use cases, that demonstrate the need and benefits of GAIA-X.
The project started on November 1st, 2021. Antonia Winne and Sina Rampe are leading the design and development of the use cases "Personalized Health Services'' and "Secondary Use of Data", in which citizen centered applications are designed, implemented, and scientifically evaluated. In the "Personalized Health Services'' use case, a personalized health service will support citizens in verifying the efficacy and tolerability of medications based on personal genetic background. In the "Secondary Use of Data" use case, the potential for understanding diseases, prevention and personalized health through the linking of longitudinal every day data with clinical and diagnostic data is explored. This use case will demonstrate how citizens donate selected health data in a de-identified form to selected research infrastructures.
For both use cases, an overview of the current state of the art was generated and market analyses were conducted. User requirements were elicited through interviews and workshops. All this preliminary work, together with the technical requirements of the implementation framework, serve as a prerequisite for the development of concepts and prototypes, which are iteratively evaluated. On this basis, application concepts will be finalized and implemented.
In addition, HPI supports the consortium in the technical data regulation and specification of citizen-centric data access, acts as part of the architecture team for the sustainable alignment of the overall project to the GAIA-X infrastructure and contributes its expertise on interoperability with EU standards.