Introduction

As a designer and developer on the MyEyeSite project, I was part of a research and development collaboration with Moorfields Eye Hospital, UCL and my colleagues at Loft Digital aimed at accelerating rare disease research and improving healthcare.

Our challenge was to find a new approach that could empower patients to collect and share their specialist rare disease data, which is essential for scientists to develop precision genetic therapies for people with rare diseases. The challenge was that this data was difficult to collect as it had been generated in different clinical and community settings over the course of a patient's lifetime and was not linked. In addition, there was no system in place for rare disease doctors to see a full copy of a patient's clinical biography ahead of an appointment.

MyEyeSite was developed to address these problems by providing a platform for patients to collect, link, and share their specialist rare disease data in a secure, systematic, and structured way.

Solution

Our team engaged patients, doctors, and researchers as collaborators to design and develop the MyEyeSite application. They carried out extensive user research and collaborative design sprints, held public patient days to garner wider input, and worked with the RNIB to ensure accessibility. They also spoke at many events and engaged with pharmaceutical companies to explore commercial interest.

The MyEyeSite application was designed to consist of a platform with interfaces (web or mobile) for patients to scan and manage their specialist medical and genetic data on a timeline, and to share this data with doctors, research studies, family, and friends in a secure, systematic, and structured way. We also developed an interface for doctors to review data shared with them in this way.

Outcome

The MyEyeSite project has received several awards and recognition, including an IoO Public and Patient Involvement & Engagement Award in 2021, an Innovate UK funding award winner in 2020, and an HDRUK funding award winner in 2019. We also published a paper in the Journal of Medical Internet Research (JMIR) and presented at the ARVO 2021 conference. Short films about MyEyeSite were made by NIHR Moorfields BRC, and there were podcasts and films to introduce and explain the application.

The MyEyeSite application is available at www.myeyesite.health, and it is expected to revolutionise the way patients with rare diseases share their data with doctors and researchers to accelerate their work. I am proud to have been part of a project that could potentially change the lives of millions of people globally, and I am excited to see its impact in the coming years.