A research paper focusing on the MyEyeSite project has been published in the UK, which helps demonstrate how technology can be used to benefit patients, improve treatment and advance medical research. Collaborating with Moorfields Eye Hospital and UCL, Loft developed the digital platform MyEyeSite as well as the MyEyeSite patient application with the aim of making it easier for patients with rare eye diseases to share their health data with clinicians and researchers.
Entitled Collaborative Research and Development of a Novel, Patient-Centred Digital Platform (MyEyeSite) for Rare Inherited Retinal Disease Data: Acceptability and Feasibility Study, the paper outlines qualitative data collected as the application was introduced to and used by patients. Patients told the researchers that they were frustrated with existing systems and had high hopes for MyEyeSite and similar technologies.
“Of the surveyed 80 participants, 68 (85%) were motivated to have a more active role in their eye care and share their data for research purposes using a secure technology, such as a web application or mobile app.”
The report concludes that, when given the opportunity, patients with inherited retinal diseases are keen to collect, manage and share their health data – both for research and for their own care. The research demonstrated that user-centred technology developed by Loft has the potential to facilitate aggregation of data for research purposes, while at the same time offering benefits to patients with rare eye diseases and the wider community of people with rare diseases.
Loft, and our colleagues at Moorfields Eye Hospital and UCL are using the learnings outlined in the paper to develop better platforms in digital health, and to improve patient care and academic research opportunities. Our thanks go out to Dr Rose Gilbert, Dayyanah Sumodhee, Dr Nikolas Pontikos, Dr Catherine Hollyhead, Angus Patrick and Dr Jocelyn Cammack for making this paper a reality.