Developing mobile applications for and with young people with long-term conditions learning to share their healthcare with professionals: a young person and family-led approach

Although young people are frequent users of mobile devices in day-to-day life, there is little reliable research that actually involves young people with long-term conditions as partners in the development and testing of mobile technology applications to support their health needs. However, the transition from child to adult health services means that young people need to develop their own clinical skills and knowledge so that they can manage their condition in a confident and competent manner. Therefore this area of research is ripe for development. A group involving a patient with juvenile idiopathic arthritis (JIA), a parent, doctors, nurses, researchers and technologists have established a Manchester-based research and development programme on mobile technologies for young people with long term conditions. We have fostered strong partnerships with other national groups to help us agree on research priorities in this important area, and a plan of work to help us achieve these. First we obtained valuable suggestions from a national group of children and young people with JIA on the types of information and tools they would like to see included in a JIA specific mobile application. Next we are reviewing the research evidence to help us in our future work, and working with young people, parents and health professionals to produce a detailed software specification for a prototype application to test with young people. This poster will explore and discuss the progress we have made, with a focus on the central role of young people and their families living with JIA in the project.