Implementation of a National Framework to Promote Health Data Sharing

Introduction

Sharing health data has been a major topic in medical informatics research in Germany in the last two decades. The latest developments show that the interdisciplinary collaboration between the fields of medical bioinformatics and systems medicine has remarkably progressed, and innovative solutions to foster health data sharing have been presented by various German research groups, e.g., requirements for data integration platforms[1] [2], the role of medical informatics for systems medicine[3] [4], the interconnection of system architectures for rare disease registries[5], or information technology (IT) supported patient recruitment[6].

However, the various types of heterogeneous health data produced by patient care and research turned out to be insufficiently integrated[7] [8]. Often, research data only show a molecular snapshot of an individual disease. Intelligent correlation with clinical data is expected to offer new potential for patient care and biomedical research. Medical data semantic integration and joined analysis may not only lead to a better prediction of individualized decisions but also to a better understanding of the disease, and can be the base for new individualized prevention, diagnosis, and therapeutic measures.

Therefore, the German Ministry of Education and Research (BMBF) has launched the Medical Informatics Initiative (MI-I)[1] to translate data sharing potential into effective practical use and to solve the prerequisites of data sharing like patient consent and semantic interoperability, starting with university medical centers but already being designed to be rolled out to all hospitals and to outpatient care organizations throughout Germany in the later stages of the program.

• References

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