Date: 10 January 2019
An enthusiastic group of children and young people from Kent, Surrey and Sussex are shaping research which affects them and others.
The Young People’s Advisory Group (YPAG) for research into the health of Children and Young People across Kent, Surrey and Sussex recently celebrated its first anniversary and during the year its popularity and attendance numbers grew.
A group of children and young people aged between eight and eighteen, who have experience of the NHS, have come together to give advice to researchers on research proposals within children's health. To date, one project discussed at YPAG has secured funding from the National Institute for Health Research (NIHR).
As the year went on, more young people joined the meetings through word of mouth, or after turning eight years old, joining older siblings. By its first anniversary there was a ‘pool’ of about 25 young people.
A Parent and Carer (PaC) Advisory Group was set up alongside the YPAG and its numbers have also increased. Members of the PaC have an opportunity to listen to the same research presentations as the YPAG; they also may hear separate presentations which will be developed further before being presented to the YPAG. Occasionally there may be subjects which are very relevant to the PaC which are less so for the YPAG.
Professor Paul Seddon and Research Nurse Cathy Olden initially had the idea of establishing a group for young people for the Kent, Surrey and Sussex area and a working group of interested people was set up to progress the idea.
Professor Seddon says: “We recently celebrated the first birthday of the YPAG for Kent, Surrey and Sussex and this made me think about how far we have come in our first year culminating in recently becoming affiliated to the alliance of the national GenerationR YPAGs.
“Setting up our group, and finding a source of start-up funding took almost two years. It was a unique joint venture between NIHR Clinical Research Network Kent, Surrey and Sussex (CRN KSS); NIHR Research Design Service South East (RDS SE), INVOLVE, and clinician-researchers from Brighton & Sussex Medical School (BSMS), Brighton and Sussex University Hospitals NHS Trust (BSUH) and Sussex Community NHS Foundation Trust. We also need to pay tribute to the Rockinghorse charity that funded our first year of operation, without which we could not have got started.”
Kate Sonpal, Senior Public Involvement Manager at INVOLVE says: "It has been a pleasure to help the team establish the Kent, Surrey and Sussex YPAG. The meetings are carefully planned in advance and the feedback from the children and young people who attend has been overwhelmingly positive.
"It is so important that children and young people have the opportunity to comment on research proposals and this group has been instrumental in allowing this to happen."
From the start, members of the YPAG created their own ground rules and made it clear how they wanted meetings to run. They created “Top Tips” for Researchers, giving advice on how to present to the group. These include what the YPAG wants to know, what they don’t want to know, what presentations should be like and how the YPAG can help. A group of adult facilitators help run the YPAG meetings.
It is important to hear from members of the YPAG themselves. Vindhya Maripuri is 18 and says: “I attended my first YPAG meeting in March and I immediately felt comfortable in the friendly and welcoming environment and noticed that there were people of all ages present and eager to contribute.
“The session began with an ice-breaker which was followed by a discussion on how video games could help or be adapted to accommodate disabled people such as those with cerebral palsy, led by one of the speakers. We considered what features we enjoy about video games and in our groups came up with some ideas such as using virtual reality head and eye sensors and adapted controllers to make them more accessible for disabled people. We also took into account the fact that some video games may be upsetting for some children. During the session it was amazing to see some young children coming up with great ideas as well and their opinions were valued and respected by the group.”
The YPAG has also learnt how clinical trials and studies work. They had a go at developing a clinical trial themselves. Dr Christina Jones poured glasses of lemonade from two bottles: colourless lemonade and pink lemonade. There was great discussion among the YPAG members on which tasted different. Dr Jones explained that the lemonade activity demonstrates placebo effects and how people’s expectations can affect outcomes.
Researchers have made use of the YPAG and/or PaC on about 10 occasions so far. Dr Diane Sellers, Research Fellow and Specialist Speech and Language Therapist at Chailey Heritage Clinical Services, presented to the YPAG and PaC. Her research is on implementing a classification system used to describe how people with cerebral palsy usually eat and drink when they are in the community and hospital settings.
Katherine Buckeridge, from Sussex Community NHS Foundation Trust, presented her study and fed back: “I was actually surprised at how much feedback I got from both groups, particularly from the children who don’t have the constraints on their thinking. They give a different perspective to things and can be much more creative than adults in their approach”.
Dr Peter Christian, a Paediatric Consultant from the William Harvey Hospital, East Kent Hospitals University NHS Foundation Trust, said: “Overall presenting to the YPAG and the Parents' Group was a very helpful experience, both in terms of feedback and just in terms of the process (presenting my proposal in a way that was appropriate for a young audience really helped my focus).
“There were many points of agreement between the feedback from the Parent's Group and the YPAG, which helped to confirm the really important issues (for example in my case the importance of explaining the longer term aims of my research to help the patient group I am studying)”.
Victoria Hamer, RDS SE Lay panel Member and YPAG Planning Committee Member says: “It was clear that they did ‘get’ it and this fresh clarity helped the researchers to rethink. It is a joy to see the enthusiasm and the effect of such a group of young, focused children and young people.”
Jennifer Parry is a Consultant in Paediatric Dentistry at Sussex Community NHS Foundation Trust and also an YPAG volunteer facilitator. Jennifer says: "The Kent, Surrey and Sussex YPAG has provided me with a much greater understanding about what children think about healthcare and research.
The children and young people who attend YPAG have demonstrated great potential to serve as agents of knowledge, and report their observations with remarkable sophistication".
Dr Claire Rosten is a member of the PaC and also works for the Research Design Service (RDS). Claire says: “It has been interesting to go to the PaC. I attend as a parent first but it has also helped me in my professional life. My daughter loves attending the YPAG. She comes alive during the meetings and her confidence has grown as she is mixing with children from eight to eighteen years old. She is able to relate some of what happens at the YPAG to her school work.”
Faye, 8 says: “I like the YPAG because it's a really good way of talking about ways to help children who have problems.”
YPAG and PaC out and about
YPAG featured at the ‘Co-producing research: How do we do it?’ event held in London in July. Duncan Barron, Kate Sonpal of INVOLVE, and Victoria Hamer gave a presentation (to which Ian Brownbill of YPAG PaC had contributed) on how the YPAG was co-designed.
YPAG also featured at the ‘International Perspectives on Evaluation of PPI in Research’ held in Newcastle in November with a presentation on ‘Enabling the Voices of Children and Young People to Impact Health and Social Care’.
Vindhya and Hattie, two members of the YPAG, took part in a panel discussion after the showing of a film - ‘People are Messy' - an event about participation in research which was part of the Brighton Science Festival in October 2018. It brought home how essential patient and public involvement is to research.
At the anniversary
Artwork had been produced by members of the YPAG during the year. At the first anniversary meeting there was an art session led by Arts Facilitator, Tom Goulden. During the session Tom encouraged the entire group to contribute to various YPAG related discussions, which they all then captured using graffiti art.
In response to the question ‘What does YPAG mean to you?’ responses included: ‘I come because I want to be a doctor’; ‘it helps me understand research more’; ‘it gives me insight and challenges me’.
It is hoped that this artwork will be displayed at the Royal Alexandra Children’s Hospital in Brighton and at various other child-orientated centres where children's research takes place.
The adult facilitators were also keen to hear about the children and young people's creative ideas for how to run future YPAG sessions. These included: making YouTube videos, using different art forms (e.g. music, song, and theatre), using more mind-mapping in sessions and using social media. There was also a suggestion to link the YPAG with youth councils and the National Citizens Service (NCS).
Duncan Barron, NIHR Research Design Service SE Patient & Public Involvement (PPI) Regional Operational Lead said: “Setting up the Young People’s Advisory Group (YPAG) for Kent, Surrey and Sussex has been extremely rewarding and a great experience for me. Involving children and young people in the design stages of new children's research studies is challenging but has proven to be possible.
"We have recruited a range of committed and enthusiastic children and young people who are keen to help and who are not afraid to ask questions, no matter how silly they might seem at first sight - these are often the most important questions.
"I have been so pleased with suggestions from the children and young people themselves in how they want the group to run with some keen to help facilitate the group, which we want to help support.”
Professor Seddon concludes: “During our second year, we will help more researchers from across Kent, Surrey and Sussex, as well as welcoming back researchers as their projects progress through to funding. We will also help researchers who get their projects funded to develop participant information in preparation for research ethics committee applications, and advise on recruitment strategies.
"The YPAG has already come up with ideas for future research which includes a focus on disabilities, eating disorders, healthy eating and tackling obesity, mental health and more research on asthma.
"We will continue to develop our national role within the GenerationR Alliance. For example, the Alliance have asked us to help them develop a glossary of research terms, and to give advice on commercial research projects from pharma companies”
Photos by Richard Scott.
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