Capturing young people’s voices in eye research
2 September 2020
The Young Persons’ Advisory Group (eyeYPAG) allows young people to learn about research. They come together with researchers who are exploring different eye conditions and treatments.
Background on eyeYPAG
Until 2019, there had never been a young persons’ advisory group in the United Kingdom for children with eye or vision conditions.
As a result, Moorfields Eye Hospital established the group and eyeYPAG has been learning how best to involve young people at all stages of the eye research process ever since.
This forum enables children and young people to work with researchers and provide feedback on research proposals, participant information material and manuscripts. It is supported by the Moorfields Biomedical Research Centre, Moorfields Eye Charity and Santen.
About the group
Currently, a group of 16 children and young people (aged between 8-16) meet 3-4 times a year in London, at or near Moorfields Eye Hospital.
All of the group’s current members are either affected by eye and vision conditions, involved in clinical trials or have an interest in eye research.
Through in-person and online sessions, young people:
- learn and share their ideas about what should be researched and how
- provide feedback and advice to researchers thoughout stages of research
- ensure information about research is children and young people friendly
A group of eyeYPAG members worked together to coproduce an evaluation report and learn from the different groups involved - from funders to researchers.
Through workshops, focus groups, surveys and questionnaires, they found eyeYPAG to be empowering for everyone involved.
The impact of eyeYPAG on young people
The benefits for children and young people was learning about different eye conditions, making a difference to research, developing new skills and meeting new people with shared interests.
I love meeting new people who are interested in the same things as me.
Being able to identify as part of a group, where she has a voice, has been good for [my daughter]. It has also helped her to identify as someone who has a visual impairment and recognise that she is not alone in this.
The impact of eyeYPAG on researchers
Researchers valued the personal and practical experience of having the input of children and young people affected by or with an interest in eye conditions and research.
They shared how this helped them to improve their research plans and take into account new perspectives.
“I’ve been working with the group since the beginning. I’ve had about four sessions with them exploring different parts of my project, and they’ve just been totally brilliant, helping me improve it.
Since the start of their work, eyeYPAG have:
- contributed to 13 different research projects, attended 4 conferences and events as speakers and created their own podcast
- worked with artist, Sofie Layton and co-facilitator, Jacqueline Miller to develop a shared identify for the group which led to the creation of an eyeYPAG logo and hoodies.
- won the Moorfields BRC Patient and Public Involvement and Engagement in Research award (PPIE) award in June 2020, presented by NIHR Moorfields Biomedical Research Centre.
- became part of the GenerationR alliance of YPAGs in England and the eYPAGnet consortium of European YPAGs as well as the international iCAN network.
- worked together to reach six shared agreements to reflect their working relationships and co-production ethos, presented in a co-produced film.
- published their self-evaluation paper in the Research Involvement and Engagement journal, also found in the PubMed library database.
“[Young people’s involvement] makes research better, but also children and young people have a right to have a voice and have a say in things that affect them.
Children and young people can have very different perspectives and expectations of research and it is critical their voice is heard. They can have great insights that adults will fail to spot or think less important, but which might make all the difference when engaging their peers in research studies. Their involvement is not only important in the design of research but also for the future of research as they’re helping to shape the research (and researchers) of the future.
EyeYPAG will continue working with researchers to develop guidance tools and organise engaging activities for children and young people.