Evaluation of a clinical decision support system for rare diseases: a qualitative study

Abstract Background Rare Diseases (RDs) are difficult to diagnose. Clinical Decision Support Systems (CDSS) could support the diagnosis for RDs. The Medical Informatics in Research and Medicine (MIRACUM) consortium developed a CDSS RDs based on distributed clinical data from eight German university hospitals. To patient cases, uses different hospitals perform similarity analysis obtain an indication of diagnosis. optimize our CDSS, we conducted qualitative study investigate usability functionality designed CDSS. Methods We performed Thinking Aloud Test (TA-Test) with experts working Centers (RDCs) at MIRACUM locations which specialized treatment An instruction sheet tasks was prepared that participants should during study. TA-Test recorded audio video, whereas resulting transcripts were analysed content analysis, as ruled-guided fixed procedure analyse text-based data. Furthermore, questionnaire handed out end including System Usability Scale (SUS). Results A total established RDC included indicate more detailed information about patients, such descriptive attributes or findings, can help system better. rated positively terms functionality, functions enable user overview similar patients medical history patient. However, there is lack transparency results analysis. often stated present exact symptoms, diagnosis, other characteristics define two similar. In section, received score 73.21 points, ranked good usability. Conclusions This investigated Despite positive feedback system, still requires some revisions improvement