Collaborative Research and Development of a Novel, Patient-Centered Digital Platform (MyEyeSite) for Rare Inherited Retinal Disease Data: Acceptability and Feasibility Study

Abstract

Background Inherited retinal diseases (IRDs) are a leading cause of blindness in children and working age adults in the United Kingdom and other countries, with an appreciable socioeconomic impact. However, by definition, IRD data are individually rare, and as a result, this patient group has been underserved by research. Researchers need larger amounts of these rare data to make progress in this field, for example, through the development of gene therapies. The challenge has been how to find and make these data available to researchers in the most productive way. MyEyeSite is a research collaboration aiming to design and develop a digital platform (the MyEyeSite platform) for people with rare IRDs that will enable patients, doctors, and researchers to aggregate and share specialist eye health data. A crucial component of this platform is the MyEyeSite patient application, which will provide the means for patients with IRD to interact with the system and, in particular, to collate, manage, and share their personal specialist IRD data both for research and their own health care. Objective This study aims to test the acceptability and feasibility of the MyEyeSite platform in the target IRD population through a collaborative patient-centered study. Methods Qualitative data were generated through focus groups and workshops, and quantitative data were obtained through a survey of patients with IRD. Participants were recruited through clinics at Moorfields Eye Hospital National Health Service (NHS) Foundation Trust and the National Institute for Health Research (NIHR) Moorfields Biomedical Research Centre through their patient and public involvement databases. Results Our IRD focus group sample (n=50) highlighted the following themes: frustration with the current system regarding data sharing within the United Kingdom’s NHS; positive expectations of the potential benefits of the MyEyeSite patient application, resulting from increased access to this specialized data; and concerns regarding data security, including potentially unethical use of the data outside the NHS. 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. Conclusions This study demonstrates that patients with IRD are highly motivated to be actively involved in managing their own data for research and their own eye care. It demonstrates the feasibility of involving patients with IRD in the detailed design of the MyEyeSite platform exemplar, with input from the patient with IRD workshops playing a key role in determining both the functionality and accessibility of the designs and prototypes. The development of a user-centered technological solution to the problem of rare health data has the potential to benefit not only the patient with IRD community but also others with rare diseases.

People with long-term conditions sharing personal health data via digital health technologies: A scoping review to inform design

“…“Participants also described a sense of increased agency and being empowered to manage their conditions through a central place where they could self-administer changes in their personal details and be in control of their own health data, including how it was used in research.” [ 42 ]…”

“…Positive experiences were described in four of the 17 publications [ 39 , 40 , 42 , 47 ]. Three of these publications noted that data sharing within digital health technologies facilitated Instantaneous Access with relevant healthcare professionals, either as part of a routine engagement or when facing extraordinary circumstances e.g., away on holiday.…”

“…One publication noted that users also experienced positive aspects of digital health technologies for the sharing of PGD in terms of Longevity of Data [ 42 ]. This was especially salient for those who had previous experience of such:…”

“…So, if I’d have had that data we would still have that along with my letters from 1995. Yeah so, you will not lose your own data because it’s so important to you whereas we are just 1 in 60 million people in the United Kingdom.””[ 42 ]…”

Reimagining digital healthcare with a patient-centric approach: The role of user experience (UX) research

“…Development and 4. Evaluate and Iterate, which engaged patients using both qualitative methods (interviews, focus groups and interactive workshops) and quantitative methods (survey) throughout the process ( 13 ).…”