We all know that it’s important to involve young people in research that will have an impact on us. We have a right to be involved, and we can play a vital role in improving the quality of research and its relevance. We would like to encourage other young people to get involved, and encourage more researchers to work with groups like us!
The Kent, Surrey, and Sussex Young People's Advisory Group in Health Research (YPAG KSS) was formed in 2017. We are a group of children and young people aged 8 to 18, with adult volunteer facilitators, who meet every two months to advise researchers on their projects. Many of us have experienced problems with our own health, which give us particular insights. Since March 2020, due to COVID, we have not been able to meet face to face, but we have continued to hold lively, well-attended meetings on Zoom.
In March 2022, YPAG KSS celebrated its fourth Anniversary. We took this opportunity to reflect on all our work, and about how we had helped others, as well as how we have benefited from being part of the group.
Quite simply, we can look at research from the perspective of the people it is aimed at - the young people who are going to be partners in the research!
We have advised health and social care researchers from across Kent, Surrey, Sussex and beyond, helped them with grant and Research Ethics Committee applications, and to design relevant research which young people want to take part in. We have also joined the GenerationR Alliance and helped them design a toolkit for others wishing to start up a new YPAG.
At YPAG meetings, researchers present their projects to us and we give direct, honest feedback. This helps them to refine and improve their research proposals, ideas and instruments. For example, after a YPAG meeting, one researcher we worked with completely redrafted their recruitment materials. These new versions were submitted as part of their ethics application. They also used YPAG feedback to design a new guide for foster carers who will support children to complete the questionnaires.
For some researchers, advice from YPAG has helped them develop a successful application for competitive funding. For others, YPAG has helped make sure their research is asking the right questions, those of relevance to young people.
There are many benefits that the perspective of young people could bring to research, but that isn’t the only positive. What do young people themselves get from being involved?
We all get involved because we want to help and to make a difference. We want to improve care for ourselves and for the young people of the future. But we also really appreciate the chance to be heard – not just talked to or talked about! It’s really nice to get your opinion out, because when you’re a child you don’t often get that chance.
It’s good when you see a project and it’s obvious that the research team have forgotten it’s for children and they’ve approached it from a very clinical, or a very adult, point of view. In those cases, it’s good to take them back a peg or two and let them know ‘you’ve forgotten who your target audience are here’. And they go ‘oh yeah!’.
It isn’t just about making a difference - for some of us involvement in the YPAG could also help with career options. Some members of our group are interested in research and a career in the medical world, and being part of YPAG gives an interesting insight.
Finally, of course, the group is an opportunity to meet and interact with new people. This was particularly welcome during the recent lockdown period where some of us had forgotten the world outside our own houses! So, it was a welcome reminder of normality.
To sum up, not only do young people have an important voice in research, but getting involved can also be an interesting and rewarding experience. This group, and others like it, improve the relevance and quality of research and provide an opportunity for young people to make a difference, learn new skills and meet new people.
If you are a researcher interested in getting the views of young people on any aspect of your project:
If you are a young person interested in getting involved in research: