Selecting the best treatment option for patients suffering from rare diseases, e.g. autoimmune diseases, is still a challenging task for clinicians. Discovery of scientific innovations lacks instant access to patient data, e.g. to test research hypotheses. Current medical knowledge about rare diseases is young and fragmented, while biomarkers for meaningful decision making are not yet verified.
The aim of precision medicine is to incorporate all available data, e.g. from other patients, historic cases or biobanks, to derive a meaningful decision based on statistical analyses. Medical doctors should be able to access all details relevant for the treatment of a current case, e.g. from similar historic and worldwide patient cases, in a way that guarantees the privacy of each individual. Researchers should be able to test their hypotheses on linked data sources to improve scientific findings. For the first time, the medical documentation would be used to improve decision making for a current patient and not only for accounting and billing purposes. However, it remains unclear how to identify, link, and explore relevant data from distributed data sources, e.g. across hospitals, countries, and continents, in a timely manner.