My Eye Site Event

On the 30^th November last year a Patient and Public Involvement and Engagement (PPIE) event was held at the Institute of Child Health, UCL. The event was organised by Professor Andrew Webster and Dr Rosie Gilbert and their team from Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology who, together with tech company Loft Digital, are developing an Application designed for and with people who have rare inherited retinal diseases.

Once fully developed, the Application – called MyEyeSite – will enable patients themselves to bring together all the eye data that is held on them by hospitals where they have been treated and, if they want to, to make that data available for use in research. It will also enable them and their families to connect with each other.

Some 80 people attended the event in November, from a wide range of backgrounds and across ages spanning teenage to seniors. The agenda was jam-packed with a series of short presentations in the morning including a ‘patient perspective’ by IT Consultant, Angus Patrick. Talks by PatientKnowsBest, a social enterprise and technology platform, designed to bring together patient data from health and social care providers and the patient's own data into one secure personal health record. Gene.Vision (IoO) (launching Spring 2020), DrDoctor, and BigPictureMedical also gave a run down of their health technology products and services. Dawn Sim from Health Tech in Service Improvement at Moorfields Eye Hospital NHS Foundation Trust also spoke about her work in telemedicine. There were so many questions from the floor that some had to be held back until the afternoon when, in parallel with a session on ChatBots and Health Tech, the real business of patient and public involvement in the further development of the MyEyeSite application took centre stage.

Presented by Nick Nettleton and Sam Scarles from Loft Digital and facilitated by Davinder Kuller, Technology for Life Coordinator at the RNIB, this session was a chance to discuss in detail the potential capabilities of the App and how best to design a truly accessible and useful interface.

The feedback during the session and from the day as a whole was great – as Nick Nettleton, CEO of Loft Digital, put it, “… patients are an honest and critical bunch and that’s really good, …helping us to develop ideas and concepts for the application”

Other quotes from the day included:

Andrew Webster,: “The dialogue we’ve had today and the response we’ve had has been invaluable for us to take back and to affect the way the application goes”.

Angus Patrick, patient and IT consultant: “Very much my interest in this is to bring that complete dataset together to researchers because the small outliers could be very important for getting a treatment or a cure”.

Laura Fietta, the mother of a young patient with a rare inherited eye condition: “With rare diseases there aren’t many people with those conditions so it’s important to find as many people as possible with the same condition because then researchers and other scientists and gene therapist will take note.’

The event was co-organised by NIHR Moorfields BRC and was chaired by Dr Andi Skilton, Senior Manager for Public Engagement & Involvement (PEI) at the NIHR CRN.

MyEyeSite is one of ten Sprint Exemplar projects that were announced by Health Data Research UK in 2019. You can join or find out more at myeyesite.org/