The Your Rheum story: involvement of young people in rheumatology research

Abstract

Until recently, young people too often fell into the gaps between services due to restrictive age criteria. Furthermore, their voice was too infrequently heard or was represented by proxies in the form of their caregivers or by adults recalling their youth. The lack of young person involvement in adolescent health research including the arena of paediatric and adolescent chronic disease has been highlighted in current literature. However, the involvement of young people at all stages of health research, from priority setting through to dissemination, is widely advocated. Furthermore, such involvement is considered to be important ethically and, most important of all, has been called for by young people themselves. Young people have clear views about research and these views potentially enhance our understanding of how young people form opinions about research. These opinions in turn informs researchers how to best engage young people (including recruitment and retention) in research. Such involvement of young people ensures that research questions, project methodologies and/or interventions are truly resonant with their lives. This paper describes the development of a national youth advisory group in UK rheumatology, an important addition to the evolving evidence base to support the involvement of young people in rheumatology research. The paper is written with two young people who are members of this group, providing them with an opportunity to learn more about a key component of research—writing papers for publication.