The importance of a young person’s voice in research
Kelsey, 20, lives and works in Manchester and has a rheumatic condition that is yet to be diagnosed. In 2016 she got involved with a new young persons’ advisory group, Your Rheum. Here she talks about her experience of speaking at a medical conference on behalf of the group.
I heard about the British Society for Paediatric and Adolescent Rheumatology (BSPAR) conference through an advisory group that I am a member of called Your Rheum. The group is for people in the UK aged 11-24 years who have a diagnosed rheumatic condition, to help understand and get involved in rheumatology research that is relevant to them.
I wanted to attend the conference to voice what we wanted researchers to focus on and to encourage the researchers to involve young people in the research. After all, we are the experts.
I feel that I have learnt a lot by attending the conference and it was great to see the different companies and charities that get involved to provide support and information to young people with these conditions and their families.
At the conference, a few of the Your Rheum members and I answered questions such as, what we feel is the top priority for research, our experience of research and what we think of the care that we receive. We then had a Q&A session with some of the researchers and got the chance to ask them questions regarding how they determine what is worth researching and what isn’t, and what research is being done for the mental health aspect of the condition.
What I learnt
I feel this was useful to not only for us, as people with these conditions, but for the researchers to get an insight on how we would like to be involved and why.
Before attending the conference, I believed that researchers wouldn’t be interested in our thoughts or what we wanted to be researched. However, now that I have been to the conference, I feel that our voices were heard and that researchers actually value our input and also want us to get involved in their projects.
I would like the opportunity for not only Your Rheum members but for all young people with rheumatic conditions to be able to participate in research and to be a lot more informed in how our contribution to research helps.
I’d like future research to have a focus on improving young people’s quality of life.
In the first stages of diagnosis it is vital that young people get the appropriate support as it is very hard to come to terms with alone, and if there is no support it is much easier for young people to develop mental health problems in addition to the condition. This would have detrimental effects and I feel that it is so important that we all have someone to confide in at this stage, whether that is family, friends or a healthcare professional.