Study protocol: Determining what young people with rheumatic disease consider important to research (the Young People’s Opinions Underpinning Rheumatology Research - YOURR project)

PLAIN ENGLISH SUMMARY: Involving young people in research about their health is increasingly recognized as being important to make sure that research is focused more on the needs of young people. However, at present, ideas about what should be researched and found out mainly come from researchers and health professionals like doctors and nurses rather than young people. Therefore, in the past, young people’s ideas about what should be researched in terms of rheumatic problems have not been explored. In this study, we will talk with groups of young people with rheumatic problems across the UK to explore what they think research into their health should focus on. We will also discuss with young people, if and how, they would like to be involved in shaping research into rheumatic problems. The findings from this work will help make sure that the views of young people with rheumatic problems influence the work of a group of researchers and health professionals who concentrate on rheumatology research. This group is called the Barbara Ansell National Network for Adolescent Rheumatology (BANNAR). A national young person’s advisory group will be set up to make sure that the beliefs and ideas of young people with rheumatic disease inform the work of the BANNAR. ABSTRACT: Background The involvement of people of all ages (including young people) in health-related research is now widely advocated but research priorities are still largely driven by professional agendas, with evidence from the adult literature reporting a mismatch between researcher and patient generated lists of research topics. To date, there have been no studies exploring the research priorities of young people with long term conditions including rheumatic disease. In this study, we will explore young people’s beliefs about their research priorities for rheumatic conditions and whether and how young people would like to become involved in the research process. Methods/Design We will hold up to 16 focus group discussions with young people (11–24 years) across England, Northern Ireland, Scotland and Wales. Two age groups will be recruited to the study, 11–15 year olds to represent early and mid-adolescence and 16–24 year olds to reflect late adolescence and emerging adulthood. Focus groups will be as interactive and engaging as possible, using a mixture of statement sorting and a research prioritization exercise to stimulate the discussion. Young people will be recruited via members of the Barbara Ansell National Network for Adolescent Rheumatology (BANNAR) and relevant national charities. Focus groups will be audiotaped and transcribed for analysis. Discussion This project will help ensure full representation from young people with rheumatic diseases in the development of a research strategy for BANNAR and will ultimately inform a young person’s led involvement strategy to facilitate the future ethical and meaningful involvement of young people in BANNAR members’ future research programmes. In addition, a national young persons’ advisory group will be established, the constitution and format of which will be determined by the young people themselves.