New study design sees young people with rheumatic conditions across the UK have their say on the focus of medical research
Young people living with rheumatic conditions across England, Northern Ireland, Scotland and Wales, are sharing their thoughts on the focus of medical research to help shape a new national initiative, as published in BioMed Central Research Involvement and Engagement.
The Young People’s Opinions Underpinning Rheumatology Research (YOURR project), funded by Arthritis Research UK, aims to determine what young people with rheumatic disease consider important to research, and will help to make sure that their views influence the work of a group of researchers and health professionals who concentrate on rheumatology research.
Members of the Public Programmes team at Central Manchester University Hospitals NHS Foundation Trust (CMFT), the Centre for Musculoskeletal Research at The University of Manchester and the NIHR Manchester Musculoskeletal Biomedical Research Unit (BRU) are currently running the research , on behalf of the Barbara Ansell National Network for Adolescent Rheumatology (BANNAR).
Researchers are holding focus group discussions across the UK with people aged between 11 and 24 years old, who got involved through rheumatology clinics of BANNAR members and national rheumatology charities including Arthritis Care.
The study’s Co-Principal Investigator, Dr Janet McDonagh, Clinical Senior Lecturer in Paediatric and Adolescent Rheumatology at the Centre for Musculoskeletal Research, said: “Involving young people in research about their health is increasingly recognised as being important to ensure their needs are heard. However, at present, research ideas mainly come from researchers and health professionals like doctors and nurses rather than young people, and so, young people’s ideas about what should be researched in terms of rheumatic problems have not necessarily been explored.
“In this study, we are talking to groups of young people with rheumatic problems to discover what they think research into their health should focus on. We have also discussed with young people, if and how, they would like to be involved in shaping research into rheumatic problems.”
Suzanne Parsons, from the CMFT Public Programmes team is the study Research Associate. She added:
We made sure that focus groups were as interactive and engaging as possible, using a mixture of statement sorting and a research prioritisation exercise to stimulate the discussion.
“To date, there have been no studies exploring the research priorities of young people with long term conditions including rheumatic disease.
“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 future research programmes, including those here in Manchester. In addition, a national young persons’ advisory group will be established.”
The findings from this study are set to be published later this year.
