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

摘要

Plain English summaryInvolving 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.