Would you work with me? The process and impact of involving young people with a chronic condition in research and innovation

Research and innovation is increasingly conducted together with health service users. This is termed Patient and Public Involvement (PPI). Since PPI is mostly studied in adult health service users, the thesis investigated PPI of young people with a chronic condition. It demonstrates that PPI can take many different forms. Young people can, for example, be involved as members of project teams and through advisory boards. Reflections of young people and professionals show that PPI is a complex undertaking. Its success depends on various factors, such as the match between PPI activities and the experiences and abilities of young people and the flexibility of professionals. The thesis also demonstrated a general believe in the positive impact of PPI, for example, on research and innovation and the personal development of those involved. These claims are, however, predominantly based on vague hindsight reflections which are not substantiated by data. The thesis therefore concludes with guidance on how to conduct more systematic impact evaluations.