This paper is in the following e-collection/theme issue:

Development and Evaluation of Research Methods, Instruments and Tools (744) Personal Health Records, Patient-Accessible Electronic Health Records, Patient Portals (698) Focus Groups and Qualitative Research for Human Factors Research (1220) Ophthalmology (67) Electronic/Mobile Data Capture, Internet-based Survey & Research Methodology (997) Formative Evaluation of Digital Health Interventions (3229)

Published on in Vol 6, No 1 (2022): January

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/21341, first published .
Collaborative Research and Development of a Novel, Patient-Centered Digital Platform (MyEyeSite) for Rare Inherited Retinal Disease Data: Acceptability and Feasibility Study

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

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

Authors of this article:

Rose M Gilbert1, 2, 3 Author Orcid Image ;   Dayyanah Sumodhee4 Author Orcid Image ;   Nikolas Pontikos2, 5 Author Orcid Image ;   Catherine Hollyhead6 Author Orcid Image ;   Angus Patrick6 Author Orcid Image ;   Samuel Scarles7 Author Orcid Image ;   Sabrina Van Der Smissen7 Author Orcid Image ;   Rodrigo M Young5 Author Orcid Image ;   Nick Nettleton7 Author Orcid Image ;   Andrew R Webster1, 2, 5 Author Orcid Image ;   Jocelyn Cammack1, 5 Author Orcid Image
Article Authors Cited by (7) Tweetations (20) Metrics

Journals

  1. Gilbert R. Reimagining digital healthcare with a patient-centric approach: The role of user experience (UX) research. Frontiers in Digital Health 2022;4 View
  2. Rathbone A, Stumpf S, Claisse C, Sillence E, Coventry L, Brown R, Durrant A, Kocaballi B. People with long-term conditions sharing personal health data via digital health technologies: A scoping review to inform design. PLOS Digital Health 2023;2(5):e0000264 View
  3. Daich Varela M, Sanders Villa A, Pontikos N, Crossland M, Michaelides M. Digital health and wearable devices for retinal disease monitoring. Graefe's Archive for Clinical and Experimental Ophthalmology 2024 View
  4. McDonald N, Luo A, Moh P, Mazurek M, Andalibi N. Threat Modeling Healthcare Privacy in the United States. ACM Transactions on Computer-Human Interaction 2024 View
  5. Granja-Dominguez A, Martin-Gomez C, Ortigoza-Escobar J, Rodriguez-Lopez R, Gonzalez-Bermudez L, Dantone S, Pavanello S, Blasco-Amaro J. A proposal to involve people living with rare and complex conditions in the development of clinical practice guidelines. Patient Education and Counseling 2025;135:108708 View
  6. Sumodhee D, Venning K, Moghul I, Wemyss T, Ramessur R, Abbas M, Ioannidou E, Baker H, Nguyen Q, Wang C, Balaskas K, Pontikos N, Thomas P. A commentary on ophthalmic patients co-designing a new tool to better understand their hospital letters. Research Involvement and Engagement 2025;11(1) View
  7. Carr R, Chan V, West N, Görges M. Developing Requirements for a Standardized System to Return Individual Research Results Back to Study Participants: Narrative Review. Interactive Journal of Medical Research 2025;14:e65606 View