MyEyeSite phase 2: safe sharing of data between rare eye disease patients and clinicians under social distancing

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MyEyeSite is a collaboration between Loft Digital, Moorfields Eye Hospital, and UCL Institute of Ophthalmology, that seeks to address critical issues in access and sharing of clinical rare disease data between patients, clinicians and medical researchers.These issues have become more pressing because of Covid-19. Virtual clinics are now the only way of interaction between specialists and patients. Limiting travel for vulnerable patients will remain important for some time, yet no suitable system is in place for rare disease specialists to access patients' detailed technical clinical data digitally for a virtual appointment. The current working processes are based around in-person clinics, which vulnerable, sight-impaired patients must travel to attend, often over long distances. Clinicians depend on patients bringing with them data from other appointments (that may have occurred many years ago) and which the patient is expected to have collected and curated at the time. It is worth noting that NHS internal efforts to link and distribute this data have failed, due to the logistics of patient consent.MyEyeSite aims to resolve this issue by empowering patients, through their rights under GDPR, to request, access, collect, manage and share their clinical data as they wish, digitally. MyEyeSite will provide tools for patients to do this in a safe, structured and systematic way. It will also provide an interface for doctors to safely access shared data, for example ahead of a virtual appointment. In due course MyEyeSite will provide interfaces for medical research studies to access data - with appropriate patient consent - to accelerate discovery.The first phase of MyEyeSite was a feasibility study and prototype funded by Health Data Research UK to research the problem space, design and test potential solutions, and carry out a market study. We engaged patients, doctors and researchers as collaborators, carried out extensive user research and collaborative design sprints, held public patient days to garner wider input into work in progress, and engaged industry to explore long term sustainability options.For the second phase we now want to fast track elements of the MyEyeSite R&D programme that will respond to critical issues stemming from Covid-19, by progressing the patient and clinician interfaces from prototype to live production use.In doing so we aim to enable clinicians to provide a better quality of care to this vulnerable group during the pandemic, and also progress an important long term innovation for UK rare disease capability.The Extension for Impact funding will be used to extend the current pilot programme to the end of January 2021, and to develop new functionality in response to feedback received from the pilot programme, that will enable hospitals to transfer rare disease data directly to patients within MyEyeSite, removing the need for patients to do this themselves.