From clinic to global stage: giving young people a voice in eye health research
17 October 2025
Muminah is a young patient at Moorfields Eye Hospital who advocates on behalf of other young people with health conditions.
She remembered how difficult it was coping with an eye condition at school:
My eyes had gone red, blurry and watery. I’d be in class, itching away at them.
It was her teacher who suggested to Muminah that she seek a referral to Moorfields, where she quickly became involved with Eye-YPAG — a youth patient advisory group for eye and vision research at UCL’s Institute of Ophthalmology (IoO), supported by Moorfields Eye Charity.
She described how welcoming it felt to be part of the group:
I feel like my eye condition — not only has it given me insecurities — but it’s also made me feel like there’s not a society where I’m welcome. Becoming part of Eye-YPAG has shown me that there’s always a community there for you.
Through Eye-YPAG, Muminah has developed design, communication and research skills to help ensure the accessibility of eye health research for children.
She also gives her time to the International Children’s Advisory Network (iCAN) — a global network of youth patient advisory groups — which recently hosted an event in Canada, bringing together young health advocates. She said:
It’s educational and it shows us what’s going on around the world to help children, and to give children a better understanding of health. The priority is to help children embrace their health conditions, to advocate for themselves, and get appropriate care.
Moorfields Eye Charity helped fund Moorfields Eye-YPAG’s attendance at the summit, where young health advocates collaborated to produce a position paper capturing the wants, needs and opinions of young people.
The paper will be shared with hospitals, schools, researchers and decision-makers in their home countries. Muminah reflected on her achievements:
I’m proud of myself. It shows me that I’m capable of so much, and that my eye condition isn’t something that should stop me from developing.
Dr Vijay Tailor-Hamblin — orthoptist and research fellow at the IoO, and co-facilitator of Eye-YPAG — articulated the need to involve young people in all aspects of research:
Sometimes adults will present research which they have expert knowledge about, but they’ll struggle to convey that information to a young person. That means the people who are supposed to benefit from the research can’t always engage with it.
Dr Tailor-Hamblin attended the iCAN summit in Montreal with members of Moorfields’ Eye-YPAG. He noted that important insights are missed or neglected if young people are excluded from the process:
Researchers don’t always realise the burden that research can take on a young person, so having people from different age groups and different backgrounds ensures that their voices are heard and understood.
Dr Tailor-Hamblin recently received a grant from a funding partnership between Moorfields Eye Charity and the Medical Research Foundation to build a study group focused on better understanding intermittent exotropia. He added:
Forming a young people’s group with the skillset to advise on research was game-changing for paediatric and youth engagement in research.
When asked if he had any messages for Moorfields Eye Charity’s supporters, he said:
A massive thank you! Without them, we wouldn’t be able to do what we do. Young people wouldn’t have the voice they have now. If we can address concerns from their perspective, we can make other young people’s lives better.
