Written by

Jacqueline Miller (pictured left)
Paediatric Research Nurse

Louca-Mai Brady (pictured right)
Senior Research Fellow,
Public Involvement

NIHR Moorfields CRF
February 2020

In March 2019 Moorfields Eye Hospital (Moorfields) launched a Young Persons’ Advisory Group (YPAG), specifically for Eye and Vision Research. Like other YPAG groups across the UK, the group’s purpose is to involve children and young people (C&YP) in the design and delivery of research, which:

• ensures research leads to services and policy which better reflects their priorities and concerns, for eye and vision conditions
• and is designed in ways which are accessible and appropriate for C&YP with eye and vision conditions

The group meet 4-5 times a year and involve members aged 8-16 years who:

• have personal experience of eye or vision conditions and / or
• have taken part in eye and vision research projects
• are siblings of those children
• are healthy volunteers in eye and vision research
• simply have an interest in eye and vision research

We are part of the Generation R Alliance (a national network of YPAGs); more information about the group, plus blog posts by our young people, can be found on the GenerationR website. The group is also affiliated to eYPAGnet (the European Young Persons’ Advisory Group Network) and iCAN (the International Children’s Advisory Network). These networks promote and facilitate young people’s involvement in health research, and being a part of them gives members the benefit of shared learning and training plus expands the reach of our work. Our members have presented at three conferences to date, we are also in planning, for attendance at the iCAN summit, France 2020.

Our group is based on a co-production model, where we aim to work in partnership with each other and with researchers. We seek to share power and respect everybody’s experience.

At our launch meeting we explored the notion of co-production, in association with the PhD Project of Jacq Miller: a project co-designing interventions to improve the paediatric ophthalmic research experience: Ci2i Project. During the session we used a ‘trust’ exercise; leading each other around a room with a piece of string. We discussed how it felt to lead and be led. C&YP and parents reflected on how it feels to be led through research. One child said “make sure you are not going too fast, check in with and get feedback from those you are leading”. A researcher commented on how “sometimes it is easier for C&YP to work out a way through obstacles”.

Having a co-production model enables meaningful communication with members, maximising the potential of our work and helping us better accommodate the needs of the group. For example, at our first session the C&YP suggested tablet computers would be useful, to enable those with visual impairments to fully access resources. Moorfields Eye Charity generously funded the purchase of 5 iPads and this initiative, directed by the C&YP has successfully improved inclusion for those with accessibility needs. The group also help develop the meeting’s format, by highlighting creative methods they find inspiring. This approach is not only enjoyable, but also helps the wide age range of the group’s members, access and understand research concepts. For example, artist Sofie Layton, ran a session with the group, to explore “What is research?” through a metal embossing eye image activity.

At a UCL Children’s Rights event in London, two of our group members represented our group, sharing their experiences of the Moorfields YPAG and explaining the importance of why children and young people have the right to be involved in research.