se-atlas: Mapping of Health Care Providers for People With Rare Diseases - a Cross-sectional Survey From the User Perspective

Abstract BackgroundIn rare diseases, only a low number of regionally distributed experts are available in medical care. The health service platform for rare diseases (www.se-atlas.de) provides a search for health care providers and patient organisations in Germany for specific rare diseases and presents the results to patients or physicians. The objective of this study was to examine the background and purpose, user satisfaction and usability when using se-atlas and to receive suggestions on improvements for implementation in the next release of se-atlas. MethodsWe conducted an online survey over a total period of five weeks between December 2020 and January 2021. Participants were members of patient organisations of rare diseases and experts of rare diseases centres in Germany. The questionnaire addressed the objectives of this study in 10 questions. We used Likert scales (4 to 6 points), as well as the System Usability Scale to measure usability (range: 0 to 100). The data obtained from the survey was analysed descriptively. ResultsIn total, 55 participants completed the survey (16 experts and 39 members of patient organisations). The results demonstrate that users know se-atlas mainly through patient organisations and the German National Action League for People with Rare Diseases. Furthermore, the experts use se-atlas more frequently than members of patient organisations do. Regarding to user satisfaction, participants were satisfied when using se-atlas (scale 1-6, mean = 4.31, SD = 1.18). They rated se-atlas functions with an average between 3.82 and 4.4 (scale 1-6). Additionally, se-atlas functions were considered as important with an average between 3.11 and 3.75 (scale 1-4). With regard to usability, the website was rated with an overall SUS score of 67.1, whereas the results differ between the participants group (experts = 76.1, patient organisations = 63.1). Moreover, participants made suggestions, e.g. that more disease entries should be available and usability can be improved. ConclusionsThis study involved experts and members of patient organisations to assess the background and purpose, user satisfaction and usability when using se-atlas. Despite the promising results and first new implementations, further optimisations of the platform in terms of usability and various functionalities are necessary.