JMIR Publications

ABSTRACT

Background and aims: MyEyeSite is an early stage research collaboration between Moorfields Eye Hospital NHS Trust, Loft Digital, and UCL Institute of Ophthalmology, aiming to design and develop a digital platform for people with rare inherited retinal diseases (IRD), allowing patients, doctors and scientists to share specialist eye health data. The proposed infrastructure will greatly augment research by pooling this highly specific data, from consented patients, thereby quantifying patients’ conditions and accelerating research, by facilitating the planning of disease-specific trials to develop cost-effective treatments, such as gene therapies.

Methods:

Pilot feasibility study, informed by qualitative (focus groups and workshops) and quantitive data (survey) from IRD patient engagement activities involving fifty, and eight-two, participants, respectively.

Results:

82% of participants with IRD were motivated to have a more active role in their eyecare, and share their data for research purposes using a secure technology, such as an app. Our IRD focus group sample, highlighted themes of “frustration with the current system” regarding data sharing within the NHS and positive “expectations” of the potential benefits of the MyEyeSite app and ability to access data via the app, whilst also voicing concerns about data security and potentially unethical use of data by people, outside the NHS, with commercial interests.

Conclusions:

MyEyeSite has the potential to connect groups of patients with similar conditions and uniquely valuable datasets, to commercial research projects and clinical trials which have potential to restore sight and transform lives. This strategy will allow a centralised database of genetic variants contributing to rare disease research.