By Vijay Tailor-Hamblin,
This was my first eye-YPAG meeting. I came as a supporting facilitator, because Vijay, the regular facilitator, has had a baby – CONGRATULATIONS VIJAY, from the whole YPAG group!
It was a great meeting! – 15 children and young people aged 5 to 16 years attended, with the youngest two dipping in and out of the meeting and spending lots of time at the crafts table, too. There were some of children who came for the first time, but everybody settled in quickly.
Even before the icebreaker question – what’s your favourite ice cream? – everyone was talking and had introduced themselves to the other participants. Which allowed all of them to feel much more comfortable throughout the meeting.
The first big session was about BKC – Blepharo-Kerato-Conjunctivitis. Kids with BKC get sore, red eyes, and they can be very sensitive to light. Anne-Marie Hinds, a children’s eye doctor at Moorfields, presented her plans for a research project. The group talked about the research cycle, about Participants, Treatments and Outcomes in clinical trials, and then did an activity about how a child with BKC feels when they come to the hospital for the first time, and what the best possible result of the research study would look like for them. The young people wrote their ideas on sticky notes and stuck them on a “River of Time” on the wall. I took photos whilst they were discussing the questions, and photos of the finished product. It was impressive seeing them all communicate and work together to come up with their ideas. They created an encouraging, non-judgmental environment that allowed even the youngest children to stand in front of the poster and talk in front of the rest of the group.
Then they had a chat about a questionnaire that asks children about how their eyes are feeling and what sorts of problems the eye inflammation is causing. They also talked about what sort of treatments children would like, and which ones they wouldn’t like.
Lunch came early – a round of pizza for everyone, which was quickly shared and devoured by the hungry participants after 2 hours of focused work. It was amazing to see how the new members of the group just continued chatting with those who had come for years, talking about school, holidays and anything else they could think of. There was really a very welcoming atmosphere, and everybody was at ease and chatting away. It was great to see the friendships that had grown over the years of eye-YPAG and also seeing new friendships blossoming during the meeting.
After lunch, Annegret Dahlmann-Noor told the group about her new COSMYC project. That stands for Core Outcome Set for clinical trials of Myopia interventions in Children and young people. It is a study to find out what CYP, parents/caregivers, optometrists and researchers think is most important to report when running clinical trials of new treatments to slow down the worsening of shortsightedness. Annegret wants to co-produce as much of the project with the eye-YPAG. Today the group tried out different ways of making CYP think aand talk about myopia and how it matters to their life. One activity was “a day in the life of a child who has to wear glasses or contact lenses”, and everybody wrote on a long piece of paper what they do with their glasses/contacts during the day, and how they sometimes are a problem. A second activity was to write down on post-it notes how wearing glasses/contacts can affect a child’s physical, emotional and social well-being.
I was surprised about all the issues other young people have come across because of wearing glasses/contacts, and I found that I could relate to a few of them (due to the fact that I also wear glasses). It was nice to hear that other people have similar issues as me. Then Annegret asked which method was better – thinking about the day, from morning to night and school versus holidays, or thinking about feelings, physical and social health. After a bit of a discussion, the whole group voted for keeping both methods, because they thought that they had brought up different ideas.
Then Annegret asked the group about a way to make CYP think about who should take part in a clinical trial. The group used pictures with gingerbread-men shapes to think about the youngest and oldest age of participants, and whether children from different ethnic backgrounds should take part, and also children with disabilities. Lots of very important thoughts came up whilst everybody was colouring in their gingerbread man. The eye-YPAG thought that this was a good activity to make people think about participants in a clinical trial.
The group also tried three different ways of choosing which outcomes are most important: a thought shower, with posters of outcomes on the floor, a ranking grid, with little cards to stick on, showing what was more important and what was less important, and a line on the floor, where everybody could stick the items on that place on the line where they thought it should be, with “not important at all” on the left, and “critically important” on the right. Everybody tried all three methods, and then they had a good discussion about what was good and not so good about each method. The clear favourite was the line on the floor.
The last activity was to make a summary of a clinical trial for the children and parents who took part. The trial was about a new treatment for amblyopia, or “lazy eye”. The treatment is called BBV (Balanced Binocular Viewing) and means that the child watches a 3D movie on a games console for an hour a day. Annegret had written a draft summary, but the group felt it was too wordy and boring. They then talked about visual summaries and infographics. Annegret had also brought a draft infographic, and the group liked that much better. They gave her suggestions for how to make it better, such as using even less words, having bullet points, simple colours, a few pictures, and not to use charts or graphs. The result now looks like this:
At this stage everybody was a bit exhausted from all the thinking and working. The day ended with the Tree of Ideas, where everybody could write on a post-it note what they enjoyed and what could be better next time. Everybody enjoyed seeing their friends and meeting new people, learning something new, having lots of activities. They would like more sessions and more time for creative arts to express their thoughts.
In my opinion, the eye-YPAG meetings are amazing. Each participant communicated, collaborated, and respected the other members of the group, no matter the difference in age. I saw members who were 15-16, taking the younger members’ ideas into account instead of dismissing them due to their age. They made sure that no one felt left out with and were extremely professional in their behaviour throughout the session. The group encouraged each other to present their thoughts and ideas, and didn’t judge no matter what was said. I could see a sense of comradery in the group because of their shared struggle, and it was amazing watching them come together, building friendships that I hope last a long time. It was a privilege to attend this eye-YPAG meeting and I hope that it continues to bring young people together, creating more friendships and allowing the members to help lessen the burden of other children in the future.
Keith Wilson, Patient Research Ambassador visits the Liverpool YPAG to talk about the 100,000 Genomes Project
How children, young people and families have improved the design, development and delivery of paediatric research.
This exercise develops knowledge of different types of research and related terminology. The task requires young people to match a phrase with its definition.
