Young people’s opinions underpinning rheumatology research 

Overview

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.

Aims

To 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.

What we did

In this study, we have been taking to groups of young people with rheumatic problems across the UK to explore what they think research into their health should focus on.

We have spoken to over 60 young people in 14 discussion groups. We have also discussed 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 is currently being set up to make sure that the beliefs and ideas of young people with rheumatic disease inform the work of the BANNAR.

Key Findings

We have published a protocol paper and guidance document on involving young people in health related research.

Parsons, S., Dack, K., Starling, B., Thomson, W., & Mcdonagh, J. (2016). Study protocol: Determining what young people with rheumatic disease consider important to research (the Young People’s Opinions Underpinning Rheumatology Research - YOURR project)

Published in Research Involvement and Engagement 2016 , 2:22

This is a protocol for an Arthritis Research UK funded priority setting exercise with young people with rheumatic conditions undertaken across the UK.It is one of the first times young people’s views on priorities in this area have been explored.

Professor Wendy Thomson and Dr Janet McDonagh from the NIHR Manchester Musculoskeletal BRU are PIs for the study.

Download the paper

Guidance on involving young people in healthcare research generated as part of the young people’s opinions underlying rheumatology research project

A guidance document created from existing resources to ensure safe, ethical and meanigful involvement of young people in rheumatology research.

Download guidance

We have prepared two papers on Young People’s research priorities for rheumatic conditions and Young People’s views on research involvement. These will shortly be submitted for publication.

Next Steps

A national young person’s advisory group is currently being set up to make sure that the beliefs and ideas of young people with rheumatic disease inform the work of the BANNAR.

This project has been supported by funding from Arthritis Research UK