Smartphones may offer a new way to monitor not only how patients with inherited retinal diseases (IRDs) function in daily life, but also how they are coping psychologically.
Using a bespoke iPhone application called OverSight, researchers from University College London and Moorfields Eye Hospital conducted a pilot study to evaluate the feasibility of collecting “digital phenotyping” data from patients with retinitis pigmentosa (RP) and choroideremia (CHM).
The platform collected passive data, such as step count, walking speed, typing speed, total words typed, autocorrections, and sentiment word categories (anxiety, down and health-related terms). This was then combined with patient-reported outcome measures that participants completed in the app.
The primary objective was feasibility, and the results were encouraging. All 25 participants successfully completed onboarding, while 92% remained in the study after one year. Among retained participants, 74% generated sufficient mobility data for analysis and nearly all of those also provided usable keyboard data. Completion rates for patient-reported outcome measures exceeded 70% across all questionnaires.
The authors wrote that, while exploratory, the findings suggest that sentiment tracking via OverSight may offer insight into the lived emotional experience of individuals with IRDs.
Digital approaches, they said, have the potential to complement existing care pathways because continuous smartphone-derived data may capture subtle behavioural changes as they occur in real-world settings.
The authors envision future systems capable of creating “closed feedback loops” where behavioural changes detected through smartphone monitoring trigger timely support, self-management advice, or clinical review.
Reference
- Jones L, Higgins B, Devraj K, Crabb D, Thomas P, Moosajee M. Feasibility of smartphone-based digital phenotyping to measure visual function and mental health outcomes in patients with inherited retinal diseases. NPJ Digit Med. 2026 May 29;9(1):601. doi: 10.1038/s41746-026-02817-w.
