Using data and technology to improve care for people with rare eye diseases
28 June 2019
MyEyeSite – is one of ten projects funded as part of the Digital Innovation Hub Programme by the Industrial Strategy Challenge Fund. It aims to support patients with rare eye diseases with new, accessible technology and to facilitate research.
MyEyeSite is one of ten Sprint Exemplar projects funded as part of the Digital Innovation Hub Programme by the Industrial Strategy Challenge Fund. It aims to support patients with rare eye diseases with new, accessible technology and to facilitate research.
Professor Andrew Webster, Consultant Ophthalmic Surgeon at Moorfields Eye Hospital NHS Foundation Trust leads this project, working with Dr Rosie Gilbert (pictured above), Honorary Clinical Fellow in Uveitis and Ocular Inflammatory Disease and other members of the team.
“Getting our project up and running has only been possible with this funding and HDR UK’s support. The idea of creating a data technology service that would empower our patients has been a solution we have wanted to develop for some time – being involved in the Sprint Exemplar process has really enabled us to get this going and we’re excited about the potential results,” said Professor Webster.
Rare diseases affect approximately 7% of the population. For these, it is harder to pool data for research purposes, as, unlike other common disorders, the pertinent data is highly-specialised, embedded and inaccessible within hospital networks (e.g. images, radiographs, electrophysiology, genetic diagnoses). This causes significant challenges for patients and their clinicians as information about appointments and treatment is not joined up. As a result, patients often carry paper copies of appointment letters and other interactions with the NHS with them and, where they wish to see their health record, make subject access requests to the individual hospitals and centres involved in their care.
“The process for NHS subject access requests is incredibly inefficient,” said Professor Webster. “It involves scanning paper notes, merging these with the electronic patient record, saving the data to a CD and sending this in the post to the patient. It would be far better to upload the data in a safe haven and allow the patient to access it directly.”
MyEyeSite will develop a prototype technology solution that will enable patients to look after their own data and share this with the clinicians they interact with. The team includes clinicians and researchers from Moorfields Eye Hospital and the UCL Institute of Ophthalmology, with a software development company, Loft Digital, working in parallel with patients to optimise the platform according to their needs.
“We’re involving patients in a number of ways through meetings, events and surveys. It is important for us to know if a technology solution – such as an app or a website – would be useful and, if so, how it would be used,” said Professor Webster.
If the prototype proves to be a success, patients will be able to decide if they would like to use it to manage their own data, and to consent to share their data with their clinical teams and for wider research. The aim will be to enable access to this on an international scale.
In 2019, eleven projects helped to develop proof of concepts for technology, methodology and research services that are informing the design of the Digital Innovation Hub Programme.
MyEyeSite: a feasibility study and prototype for a patient-owned repository of rare-disease clinical and genetic data using inherited retinal disease as a paradigm