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Kent, Surrey and Sussex’s Young People's Advisory Group celebrates its third anniversary

Kent, Surrey and Sussex Young People's Advisory Group

The Kent, Surrey and Sussex Young People's Advisory Group (YPAG KSS) recently celebrated its third anniversary with a special meeting that involved producing Graffiti Art led by artist Tom Goulden from Priority 1-54 to mark the occasion. This builds on the success of a similar event Tom led for the YPAG KSS second year anniversary.

YPAG is a group of up to 20 young people aged between 8 and 18 years old. They meet every two months on a Saturday to advise researchers planning to carry out health and social care research involving children and young people. Sessions are organised and run by volunteer adult facilitators and the young people who attend a session receive an Amazon "Thank you for Helping with Research" voucher.

Over the three years the group has been meeting, 26 study ideas have been presented by researchers. Of these, at least eight studies have so far obtained funding and opened in KSS. One researcher said: "The members of the group were incredibly helpful. It was great to have a range of ages and experiences represented…They gave excellent, honest, and clear feedback on our recruitment materials and questionnaires, including the layout, wording, ease of understanding and instructions."

Another researcher said: "We completely redrafted our recruitment materials after the YPAG meeting, and these new versions were submitted as part of our ethics application."

As well as researchers presenting their ideas, YPAG has a varied programme including training on research issues (e.g. what an ethics committee does) and artwork sessions.

The YPAG was set up in 2017 by Professor Paul Seddon from the NIHR Clinical Research Network Kent, Surrey and Sussex (CRN KSS), Duncan Barron formerly from the NIHR Research Design Service South East (RDS SE), Kate Sonpal from INVOLVE, and clinicians, academics and researchers from NHS Trusts and Universities across Kent, Surrey and Sussex

The YPAG initially received funding from the Rockinghorse charity during the first year of operation, without which they could not have got started. The group now needs further funding in order to secure this much-needed research voice.

Professor Seddon said: “COVID-19 has been a major challenge for the group. Before lockdown restrictions, we used to meet at the Royal Alexandra Children's Hospital in Brighton. Since March 2020 meetings have all been held virtually using Zoom. This has involved a lot of adaptations and imagination from the facilitators and the young people. It is a huge tribute to our young members that we still have a thriving, lively group after a year of lockdown, which is continuing to give valuable advice to researchers. Our third anniversary event included a Graffiti Art project which we ran on Zoom after sending out art materials beforehand.”

One of the young people said: "I felt that I have really enjoyed the asthma related projects that we have been involved with, because of personal experience, and I really got to talk about how I felt with those projects and tell people why I enjoyed them so much."

YPAG KSS is part of a national network of YPAGs associated with the NIHR called the GenerationR Alliance. Recently the group joined similar organisations in other European countries in a network called eYPAG (European Young Persons’ Advisory Group (YPAG) network.

Professor Seddon continues: “Our YPAG has played a major role in putting together a toolkit for people wanting to set up new YPAGs in areas where there is no current group. This toolkit is now live on the eYPAG website.

“One of the great challenges for researchers over the last year has been how to move research activities from face-to-face to online modes. YPAG KSS has been at the forefront of helping researchers to adapt to working in the virtual environment.

“For example, our young people have advised researchers on several projects including: developing a website for children with language disorders; looking at how young people cope with virtual treatment sessions and also developing a video game aimed at reducing stress in children with health problems. Our advice helped the last group with a successful application for NIHR funding in the i4i scheme.

“We welcome enquiries from researchers across Kent, Surrey and Sussex who would like to present to the group. We can give advice at any stage of research, for example, helping to define a research question relevant to young people with health problems; helping to design your study in a way, which is acceptable to young people and parents, making recruitment more successful; improving study information for young people and parents.

“All of these will help to improve the chances of successful applications to funding bodies and research ethics committees.”

If you would like to present your research idea to YPAG KSS and receive feedback, or if you would like to fund the group in some way please email ypagkss@nihr.ac.uk.