YOURR Project (Young People’s Opinions Underpinning Rheumatology ResearchBe the first to like this
Audience – Healthcare professionals, research officers
This report is a summary of good practice when involving young people in health-related research written by the Barbara Ansell National Network for Adolescent Rheumatology (BANNAR).
The involvement of young people in research is an important ethical imperative (UNCRC 1998) and has been called for by young people themselves (RCPCH 2005). ‘Involvement’ can be defined as when researchers collaborate with young people in the planning and management of studies to get patient input at ALL stages of the research process from research priority and question setting right through to dissemination of results.
The BANNAR Young people Underpinning Rheumatology Research YOURR project aims:
(i) To identify the themes and topics which are important from a young person perspective which will be used to refine and prioritise the future research strategy of the BANNAR
(ii) To explore current and/or prior experience of rheumatology research of young people (including as participants as well as involved in the wider research process) and the expectations of those young people with no such experience
(iii) To determine how and when young people want to be involved in the research process itself from agenda setting through to dissemination
(iv) To develop a youth-led involvement strategy which will ensure their meaningful involvement in future research programmes of the BANNAR