This weekend, a group of young people from the Kent, Surrey and Sussex Young People’s Advisory Group (YPAG:KSS) celebrated four years of helping child health research.
The YPAG:KSS is an enthusiastic set of young people aged 8 to 18 years. For the last 4 years, they have given up their Saturday mornings to hear from scientists about child health research and offer their insight to make it better for children and young people.
Dr Paul Seddon, Consultant Respiratory Paediatrician at University Hospitals Sussex NHS Foundation Trust, leads the meetings.
He said: “Initially, young people’s advisory groups were only available in larger cities, so young people and researchers in our local area were missing out. This inspired me to work with colleagues from my Trust, other local NHS Trusts and patient groups, and the National Institute for Health Research, and together we set up YPAG:KSS”.
“The meetings are a 2-way process. The researchers learn what works for young people and what does not. And the young people learn about science and how research happens. The response from researchers has been overwhelmingly positive.”
The group have shared their feedback on 30 research presentations throughout the years. These range from new treatments for asthma and diabetes to improving the process for diagnosing autism.
Dr Seddon added: “Some researchers ask the group to help them with how they recruit young people to their study, or how they ask for participant information. Some ask the group for help with their application to Research Ethics Committees. We know of at least 12 successful ethics applications following input from the group. And some researchers need insight from young people before applying for funding for their study. We are aware of at least 7 projects that were successful in getting funding from major funding bodies after input from our group.”
Alexis Rojas Trejo, 19, from Sussex, joined the group when it launched. He said: “The meetings have been such a positive and valuable experience. I have really enjoyed the feeling that we are making a difference and improving child health research for everyone.
“Through my time at YPAG:KSS, I have gained a better understanding of how research works and the impact it makes, which has inspired me to go and study Biochemistry and Medicine at university.”
The fourth anniversary event, at the i360 tower in Brighton, marked the first time the group has been able to meet face-to-face for 2 years.
Dr Seddon said: “For the last couple of years we have had virtual meetings. It has been hard, but the young people have risen to the challenge and the meetings have remained lively and stimulating.
“One highlight last year was the group’s participation in an international conference. They designed and presented posters about digital health solutions and collaborating with a group in Egypt.
“I’m so proud of everything our young people have achieved over the years. They have helped make the future of child health research brighter and better.”
About the Young People’s Advisory Group Kent Surrey Sussex
More information about KSS YPAG is available on the Generation R website.
- If you are a young person aged 8 to 18 interested in joining the group, or
- If you are planning to carry out health or social care research with children and young people, and would like to benefit from feedback from the group
- Please email: firstname.lastname@example.org