Introduction Patients with Epidermolysis Bullosa (EB) or rare dermatological conditions have complex and on-going medical needs, requiring the involvement of multiple healthcare professionals. Patients currently attend a large Multi-Disciplinary Team (MDT) review day which includes appointments with up to eight different clinicians. This can be overwhelming for the patient and difficult to address all clinical priorities. Here we present a smartphone App that encourages patients to interact with MDT members prior to their appointment and score the in-clinic experiences thereafter.

Methods An interactive and high-fidelity proof-of-concept prototype was developed by UCL Computer Science using Angular to implement both web and mobile applications. The back end of the system is deployed on an Azure VM, including an HTTP server (Nginx) and a container of Java Servlets (Tomcat). To ensure secure exchange of data, actions are sent to the back end via RESTful APIs to only exchange JSON format strings between server and clients.

Results By taking a human-centred design approach, a fun and intuitive digital interaction was developed for children to express their complex needs in a safe and remote way. This was co-designed with eight specialised healthcare professionals including a Dietitian, Occupational Therapist, Consultant Paediatrician and dermatologist, clinical nurse specialist, Physiotherapist, Psychologist, Ophthalmologist and Dentist. It has been adapted for use in children with severe types of EB who may have reduced manual dexterity using mobile touchscreens, covers frequently asked questions and aligns with the colourful, underwater-themed outdoor play area, characteristic of the GOSH reception area

Conclusion This mobile App and web-based prototype has been created to encourage patient involvement and collect measures of patient experience. Next steps involve user experience evaluation and validation within our patient cohort, and consultation to inform future outcome measures to provide a more patient-centred approach to experiences of healthcare in a digital age.