Clinical Patient Data Offers Opportunities for Better, Real-World Health Research

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The AWMF (Association of Scientific Medical Societies) welcomes the establishment of the 'Health Research Data Center (FDZ Gesundheit)' at BfArM, viewing it as a significant step toward creating an European Health Data Space. According to Prof. Ina Kopp, this central infrastructure for secure health data provision and use is crucial. However, AWMF experts point out several challenges that must be addressed. These include the necessity of digitizing existing data according to FHIR standards to ensure interoperability, establishing a phased concept for integrating data from Electronic Patient Records (ePA) and various registries, and creating an evaluation plan for the usability and impact of FDZ Gesundheit. Furthermore, Prof. Rolf-Detlef Treede issued a strong warning that the currently available billing records are distorted by the current revenue relevance of diagnostic concepts, meaning they do not provide an accurate picture of patients' true health status. To derive conclusions for future healthcare from this data, it is essential to expand and standardize the collection using up-to-date coding systems like those from WHO. The AWMF sees potential in the ePA because it can reflect clinical patient data regardless of current revenue relevance, and plans to support BfArM and the development of national coding systems in this direction.