Using co-design to help people living with Epidermolysis Bullosa with the effects of pain and itch

Epidermolysis Bullosa (EB) is a rare and painful skin blistering condition. We present the use of co-design by the DEBRA Charity and the Helix Centre at Imperial College London, to help people with EB address the symptoms of pain and itching. Experience based co-design, structured around the four phase double diamond design process was used to develop solutions to decrease pain and itching. In the first phase, DEBRA members completed a survey and semi-structured interviews. Secondly, thematic analysis identified four service opportunities and thirdly participants generated concepts to address each. The final phase, comprised the development of two prototypes which were tested and iterated: a community directory and a vibrating pad. This paper discusses the directory. A product directory to help people living with EB and insights into effective strategies for engaging individuals with experience of EB in co-design processes were created. Further concepts with potential for development were also highlighted. The project is an example of effective co-design in collaboration with individuals who have lived experience, particularly with EB. Findings highlight the importance of tailored approaches, prioritizing comfort, accessibility, and collaboration. These insights could be applied to improve patient-centred solutions for other healthcare challenges.