Collaborative Development of a Novel Patient-centred App (MyEyeSite): Transforming Researcher Access to Rare Inherited Retinal Disease Data

Abstract

Purpose : Inherited Retinal Disease (IRD) data are, by definition, rare and research in this area has historically been constrained by the lack of such data. To date, the challenge has been to identify these data and make them available to researchers in the most productive way. MyEyeSite is an early stage research collaboration in the United Kingdom (UK), aiming to design and develop a digital platform for people with rare IRDs that enables patients, doctors and researchers to aggregate and share specialist eye health data. The proposed infrastructure is designed to accelerate research into IRD by curating and making available highly specific data from consenting patients. The ability for this data to be accessed by appropriate researchers will facilitate the planning of disease-specific trials and the development of cost-effective treatments, such as gene therapies.

Methods : A pilot feasibility study was carried out, informed by qualitative data (generated through focus groups and workshops) and quantitative data obtained by survey from patients with IRD. Participants were recruited through ophthalmology clinics at Moorfields Eye Hospital National Health Service (NHS) Trust, UK, and databases managed by the Moorfields Biomedical Research Centre.

Results : 87% of surveyed participants (n=82) were motivated to have a more active role in their eyecare, and to share their data for research purposes using a secure application technology. 94% of our IRD focus group sample (n=50) highlighted themes of: ‘frustration with the current system’ regarding data sharing within the UK’s NHS; positive ‘expectations’ of the potential benefits of the MyEyeSite app for this patient community with increased access to these specialised data; and concerns about data security and potentially unethical use of data by those outside the NHS. Detailed patient input was also given into the functionality and accessibility of the application prototype.

Conclusions : This pilot study demonstrates that IRD patients wish to be actively involved in managing their own data for both research use and their own eyecare. It reveals their willingness to engage with the detailed design of a technological solution to the issue of the paucity of these datasets and the potential benefits to research and care, not only for the IRD patient community, but for others with rare diseases.

This is a 2021 ARVO Annual Meeting abstract.