Vision and Eyes - Patient and Public Involvement and Engagement | UCL Great Ormond Street Institute of Child Health - UCL

Read more about the patient and public involvement and engagement (PPIE) events given by members of the Vision and Eyes Research Group.

Future events

Open to all young people and families affected by childhood uveitis

3 September 2022 at 10AM

This day will provide an update on current and future topics, and a chance to hear from professionals of all types as well as the real experts - other families, children and adults who have been affected by childhood uveitis. It also gives us a chance to thank all those families who are helping other families like theirs by taking part in research.

Attendance (in person or virtual) is free, if you would like to attend or find out more please click on the link here.

Past events

The table below gives an overview of all our PPIE events given in the last three years. These were held at various locations in England with involvement ranging from members of the public to advisory groups and specific patient groups. Thank you for your interest!

Title	When	Where	Audience	Description
Using children’s attitudes to shape childhood vision research	Nov 2021	UK Research and Innovation (UKRI) website	Researchers	Blog based on our experience when engaging children and young people with childhood vision research brought valuable insights on using personal data in research plus unexpected benefits.
Windows of the Soul: An Art Exhibit	October 2021	UCL Culture Museum and Moorfields Eye Hospital	General public and clinicians	Windows of the Soul sought to unite patients, members of the public, scientists at UCL and doctors at Moorfields Eye Hospital to communicate visual perspectives of those living with visual impairment and to help educate clinicians and the public on the daily issues faced by this often invisible disability. This project was funded through the Train & Engage programme by the UCL Public Engagement Office with additional support from the UCL Institute of Ophthalmology, UCL Institute of Child Health and Moorfields Eye Hospital.
Young Visionaries meeting	Spring 2021	Virtual meeting	Children affected by rare eye disease, and their families, and vision and eye researchers	The importance of empowering those affected by disease, and ensuring that they have a voice in the strategic development of research, is enshrined within the UK’s Strategy for Rare Disease. Our patient-centred ‘Young Visionaries Group’ is working to understand the best way to capture the perspectives of children with rare eye disease on their inclusion in patient involvement and engagement activities, and potentially developing a rare eye disease specific young person’s advisory group, able to support the involvement of these children in directing and prioritising research.
Royal Society’s Parliamentary Pairing Scheme	8-12 March 2021	Cabinet Office	Policy advisors	In the Royal Society’s Parliamentary Pairing Scheme, Prof Jugnoo Rahi was paired with Joseph Reed, a Senior Policy Advisor at the Cabinet Office. This unique opportunity provided important insights for our research group into how research informs policy-making.
Mary Kitzinger Trust workshops	21/11/2020	UCL Great Ormond Street Institute of Child Health (GOS ICH)	Academics, clinicians, educators and other professionals who work with children with visual impairment and/or other developmental difficulties.	In general, the focus of the bi-yearly workshops is childhood disability related research and practice, with a particular emphasis on the health and development of children with visual impairment. This time the workshop was on "Innovations in Research and Practice in Cerebral Visual Impairment".
Bloomsbury Festival 2020: Vision	24/10/2020	Bloomsbury, London (held virtually)	General public	The Bloomsbury Festival involves partners from across Bloomsbury’s diverse academic, professional and resident community. This year's VISION theme acted as a catalyst to a wide spectrum of events from the arts and science of the visual world, to perception and futurology. As part of the Seeing and Perceiving Hub, our research group presented on "Did you know that we actually learn to see?!" Watch the video here to learn more about vision, including some fun party tricks to show to your friends and family.
Young Visionaries meeting	10/10/2020	Virtual meeting	Children affected by rare eye disease, and their families, and vision and eye researchers	The importance of empowering those affected by disease, and ensuring that they have a voice in the strategic development of research, is enshrined within the UK’s Strategy for Rare Disease. Our patient-centred ‘Young Visionaries Group’ is working to understand the best way to capture the perspectives of children with rare eye disease on their inclusion in patient involvement and engagement activities, and potentially developing a rare eye disease specific young person’s advisory group, able to support the involvement of these children in directing and prioritising research.
Design of the low vs. high intensity occlusion therapy for mild/moderate amblyopia feasibility trial.	14/07/2020	Moorfields Eye Hospital (Remote)	Eye-YPAG (Generation R), a young persons’ advisory group for eye and vision research, with all young people having experience of eye problems and treatment.	We presented our proposed study and asked children to give feedback on how best to elicit views from children about barriers to and facilitators of patching during interviews. The eyeYPAG suggested using positive questions at the start of interviews, and using ‘animal’ proxies to ask questions to young children.
Enfield Town Schools' Partnership Women in STEM evening	03/03/2020	Primary school in Enfield	Primary school age children (girls in Year 6).	Talking about science, and in particular the power of epidemiology. The Vision and Eyes team was invited to present to and interact with children and families.
“People who help us”	25/02/2020	Primary school in Enfield	School children.	Engaging reception age children in vision and eye health matters. Level of involvement included organising and delivering the programme.
Through the Eyes of a child	08/01/2020	TEDx	Public	TED talk on childhood rare eye disorders and how research can help to improve outcomes.
UCL GOS ICH Christmas lectures	10/12/2019	UCL Great Ormond Street Institute of Child Health (GOS ICH)	Secondary school young people	Three lectures and an interactive panel discussion to showcase medical research at UCL GOS ICH to a general audience, including 100 invited young people, in an informative and entertaining manner.
Generation R: young people improving Research	Nov 2019	Moorfields Eye Hospital	Eye-YPAG (Generation R), a young persons’ advisory group for eye and vision research, with all young people having experience of eye problems and treatment.	Presented follow-up research of the British Childhood Visual Impairment Studies (BCVIS) to discuss the aims of the study, unconsented data and the best ways to communicate study information with children and young people. Check out Eye-YPAG blog post about the session.
Inspiring the Next Generation: GOSH BRC Family Fun Day	20/10/2019	UCL Great Ormond Street Institute of Child Health (GOS ICH)	Members of the public and patients of all ages.	Hosted a stand at the Great Ormond Street Hospital (GOSH) Biomedical Research Centre (BRC) family fun day. The main outcome was to use a range of interactive fun exhibits to explain to lay people and patients of all ages the visual pathway i.e. how your eye sends information to your brain which is how you see. Then to explain how damage anywhere along the pathway can affect your vision i.e homonymous hemianopia.
Soapbox Science	19/05/2019	Southbank, London	Open to all members of the public.	The Soapbox Science global series of free events sees expert scientists leave the lab and take to the streets to share their work at a series of open-air talks. Inspired by Hyde Park’s famous Speaker’s Corner, these talks encourage dialogue between scientists and the public, as well as inspire the next generation of science, technology, engineering and mathematics (STEM) researchers.
Detecting Dementia in the retina	05/02/2019	Cafe Scientifique, Crystal Palace	Interested members of the public.	An interactive talk on how signs of dementia can manifest in the eye. The objectives were firstly to convey the scientific background to current research exploring eye signs of dementia and secondly to gauge public opinion on the use of anonymised data for research.
GOSH Takeover challenge	19/11/2018	Great Ormond Street Hospital (GOSH)	Young people with an interest in health and research.	For one day young people get to be the boss of jobs around GOSH including scientists, matrons, radiologists and even the deputy CEO. The opportunity was available to patients, ex-patients and siblings to give them a behind the scenes insight into who keeps their hospital running, and how we deliver research.
Uveitis family day	13/10/2018	Great Ormond Street Hospital (GOSH)	Children, young people, families affected by Uveitis.	Patient engagement and knowledge transfer event for rare disease, with short lectures from a multidisciplinary group of health professionals followed by several patient and family discussion groups. The report of the day can be found here.
Funding application of the low vs. high intensity occlusion therapy for mild/moderate amblyopia feasibility trial.	Sept 2018	Collaboration for Leadership in Applied Health Research and Care (CLAHRC) North Thames	CLAHRC Research Advisory Panel, a group of patients, carers and members of the public interested in research.	We presented a research proposal to investigate the treatment of amblyopia (lazy eye) in children. The panel commented on the merits of the study and suggested we interviewed wider care providers to capture views about amblyopia treatment (patching).
Uveitis study days	May 2018	Great Ormond Street Hospital (GOSH)	Children, young people, families affected by Uveitis.	A series of four half-days held within a clinical setting inviting children and families to talk about Uveitis and planned research in childhood uveitis, share their ideas about important unanswered questions, and prioritise different types of research.