Young people's Opinions Underpinning Rheumatology Research - YOURR
Research type
Research Study
Full title
The beliefs of young people with rheumatic conditions about research priorities for adolescent rheumatology and their involvement in shaping the research agenda in this area. - Developing a youth involvement strategy for the Barbara Ansell National Network for Adolescent Rheumatology (BANNAR)
IRAS ID
156775
Contact name
Wendy Thomson
Contact email
Sponsor organisation
University of Manchester
Research summary
The involvement of people of all ages including young people in research is now widely advocated but prioritisation of research topics is still driven largely by professional agendas. Evidence from adult literature has reported a mismatch between a researcher and patient-generated list of research topics (Tong 2008). Musculoskeletal conditions are the third most common reason young people consult their general practitioner [Haller 2007; Churchill 2000) and yet such consumers, are rarely involved in the decision-making processes of research setting in such conditions. There have been no studies to date exploring the priorities of young people with long term conditions including rheumatic disease. There is therefore a need to determine their priorities to inform future research programmes and funding in this area. Within this project we propose to hold 16 group discussions with young people across England, Northern Ireland, Scotland and Wales to explore their beliefs about the research priorities within research into rheumatic conditions, to determine whether and how young people want to become involved in the research process and to ultimately develop a young person's led involvement strategy which will ensure their meaningful involvement in future research programmes of the Barbara Ansell National Network for Adolescent Rheumatology.
REC name
North East - Newcastle & North Tyneside 1 Research Ethics Committee
REC reference
14/NE/1112
Date of REC Opinion
26 Aug 2014
REC opinion
Favourable Opinion