Development of a Dashboard for Rare Diseases - A Technical Case Report.

Abstract

About 30 million people suffer from a rare disease in Europe. Those affected face a variety of problems. These include the lack of information and difficult access to scientific knowledge for physicians. For a higher visibility of rare diseases and high-quality research, effective documentation and use of data are essential. The aim of this work is to optimize the processing, use and accessibility of data on rare diseases and thus increase the added value from existing information. While dashboards are already being used to visualize clinical data, it is unclear what requirements are prevalent for rare diseases and how these can be implemented with available development tools so that a highly accepted dashboard can be designed. For this purpose, based on an analysis of the current situation and a requirements analysis, a prototype dashboard for the visualization of up-to-date key figures on rare diseases was developed at the University Hospital Carl Gustav Carus in Dresden. The development was based on the user-centered design process in order to achieve a high-level user-friendliness. The requirements analysis identified parameters that stakeholders wanted to see, focusing primarily on statistical analyses. The dashboard handles the automated calculation of statistics as well as their preparation and provision. The evaluations showed the prototypical dashboard would be considered valuable and used by potential users. This work demonstrates that stakeholders are interested in access to prepared information and exemplifies a way to implement it. The dashboard can increase the usage of existing information in terms of a higher accessibility and thus improve the knowledge about rare diseases.