Concept for a Framework for Integrating Registry and Routine Healthcare Data in Germany

In Germany, there is growing interest in linking clinical data from routine care available in data integration centres (DIC) with external data, such as medical registries. However, a suitable technical and organisational infrastructure is required for the secondary use and linkage of registry data. This paper presents the concept of a framework for the integration of routine data and registry data using the structures of a DIC.

The development of the framework followed a step-by-step approach: (1) literature research, (2) derivation of the theoretical foundations of the framework, and (3) design and modelling of the framework.

Challenges for data linkage and matching solutions from initiatives such as the Medical Informatics Initiative (MII) or Network of University Medicine (NUM) were identified to create the theoretical basis of the framework. The initial design of the framework on increasingly detailed hierarchical levels includes functional components, processes and support units of a DIC to fulfil specific use cases from registry setup to data linkage.

The framework was developed to serve as a blueprint for the setup of a DIC as a bidirectional link between registries and routine care. At this stage it represents a theoretical concept as the result of formative research which remains to be systematically evaluated, further specified and tested in pilot projects. Despite the challenges, both registries and DIC could benefit from a future practical implementation of the framework.