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Motivation
Health systems know remarkably little about which patients have which diseases, in which combinations they occur and what prognoses these patients have. Due to increasing digitalisation, all patients leave a digital trail in their electronic medical record. However, in practice there is a lack of systematic approaches as to how prognoses on courses, secondary diseases or possible death can be obtained from these data.
Goal
A main goal of this project is the development, annotation and international validation of a reference catalogue for all diseases treated at the Charité. Furthermore, estimates of the clinical course of the diseases are to be summarised in a prognostic atlas for each disease. Finally, based on the reference catalogue of diseases and the prognostic atlas, a reference catalogue with guidelines for clinical practice is to be created.
Innovation
Widely used clinical terminologies in international health systems include ICD-10 or SNOMED-CT, which form an important basis for recording the diagnoses and, with appropriate follow-up, the courses of common and rare diseases. Merging these terminologies into a useful, easily implementable reference catalogue for both common and rare diseases has not yet been achieved due to several challenges. Despite their names and structures, these terminologies do not readily distinguish between disease diagnoses and other entities, such as isolated symptoms or test abnormalities. Nor can they be readily assigned to clinical specialties, which has led some clinicians to use ICD-10 terminology only for billing purposes. Without a reference disease catalogue, it is not possible to generate systematic research evidence for clinicians and patients on common rare diseases from routine clinical data.
Another problem is that clinical research focuses on single diseases and not on patients who usually have several diseases that are treated by different clinical disciplines. This is where the project can come in, as the electronic patient record can be used to describe a more accurate picture of all patients.
