Rare Diseases in Citizen Science - Preliminary Experiences in Developing a Personal Health App.

Abstract

SelEe is a German citizen science project aiming to develop a smartphone app for a patient-managed record. The goal is to study rare diseases with the support of interested citizens and people affected by rare diseases. We established a core research team, including professional researchers (leading the project) and citizens. Citizens have the opportunity to discuss the progress, make suggestions regarding the app's design and data entry and contribute to the dissemination of the project. To gather feedback and experiences from the core research team, we performed an online questionnaire regarding the topics "influence and communication", "improvements and learning effect", and "satisfaction". Finally, 9 citizens of the core research team participated. The results show that the citizens are very satisfied with the design of the app, their participation opportunities and the communication in the project.