Moorfields' young persons’ advisory group for eye and vision research

On Saturday 2 March the National Institute for Health Research Moorfields Biomedical Research Centre (NIHR Moorfields BRC) hosted the first meeting of the Moorfields' young persons’ advisory group for eye and vision research at St Luke’s Community Centre.

This new and exciting group, initiated by Annegret Dahlmann-Noor, consultant, is funded by Moorfields Eye Charity, the NIHR Moorfields BRC and Santen, a pharmaceutical company. The NIHR Moorfields BRC in association with the UCL Centre for Co-production in Health Research provided additional funds for the first meeting of the group, as part of a PhD project led by Jacqueline (Jacq) Miller, paediatric research nurse.

Organised by Jacq and Dr Louca-Mai Brady, senior researcher and public involvement advisor, with support from the NIHR Moorfields BRC patient and public involvement team, the event was a great success, with 16 children and young people and their parents taking part.

The children and young people explored the stages of research and ways that they can be involved in eye and vision research. They were then joined by researchers from the NIHR Moorfields BRC and UCL Institute of Ophthalmology, the UCL Child Vision Lab and City, University of London.

Together the children, young people and researchers explored “what is research?” through a metal embossing eye image activity with artist Sofie Layton. One child’s embossing showed the eye as a doorway; he talked about how we could “look at research, as opening a door to exploring something new inside the eye."

After lunch Jacq presented her PhD project called Ci2i. The project will use experience-based co-design to improve the experience of taking part in eye and vision research for children and young people. To introduce the concept of co-production, the children, young people, parents and researchers all engaged in a trust activity with Sofie and Jacq.

Reflection on the exercise revealed children’s feelings, for example that their fate is in the hands of the researchers. Researchers responded by saying how keen they are to, and how important it is to listen to and collaborate with children, young people and parents.

Feedback on the day was overwhelmingly positive; attendees said they enjoyed the day and learnt something new. Meeting and spending time with other families and the researchers was a highlight for many. The group had great energy and were very enthusiastic to have a continued positive influence on paediatric eye and vision research.

At future meetings, the children and young people will learn more about eyes, vision and clinical research. They will advise researchers on how to deliver research in a child-friendly and engaging way.

The Moorfields group will become a member of the Generation R Alliance, a nationwide young persons’ advisory group improving health through research, and eYPAGnet, the European young persons’ advisory group network.

Congratulations to Jacq and all involved for hosting such a successful first meeting of the group.