ArticleResearch involvement and engagement2026
From patient to advisor: establishing a patient council for dry eye research.
Article in Research involvement and engagement, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
objectiveTo assess the feasibility and participant-reported perceptions of a multiphase training program that jointly prepares patients and researchers for collaboration in dry eye patient-centered research.
designCross-sectional, mixed methods study. August-September 2025. SUBJECTS: Initial cohort: Dry eye patients/caregivers (8) and researchers (3). Age 18-75. High school to postgraduate education. Eastern and Central time zones. English fluency. Access to computer, internet. The participants were selected through purposive, snowball sampling. Eight (83%) females and 3 (27%) males were included. One female dropped out during Phase 1 and was replaced. One female dropped out after Phase 2 and was not replaced. The final cohort included 7 (70%) females and 3 (30%) males. Age > 30-75 years.
interventionParticipants completed a structured three‑phase training program beginning with online informational modules on patient-centered research literacy, including study design and research methods; progressed to book studies with quizzes and live virtual discussions to develop in‑depth disease knowledge; and culminated in group simulations, designing a mock research study, and replicating real‑world teamwork. July 2023-June 2025.
main outcome measuresQuantitative: participant-reported perceptions of the training using 5-point Likert scales. Qualitative: responses to semi-structured interviews.
resultsQuantitative: Statistically significant gains in self-reported knowledge were observed across all three phases of training; Wilcoxon signed-rank tests, W = -22.5, P < .01; effect sizes for each phase were large, r = .96, 0.91 and 0.91, respectively. However, results should be interpreted with caution. Qualitative: Participants described Phase 1 (Research Fundamentals) as informative but occasionally tedious; Phase 2 (Mastering Dry Eye) as valuable for in-depth content and small-group discussions; Phase 3 (Research Practicum) as valuable, although some participants expressed frustration/low interest.
conclusionsParticipants reported that this structured, multiphase training program supported their readiness for collaborative engagement in dry eye patient-centered comparative effectiveness research (CER). Statistically significant gains in self-reported knowledge were observed across all three phases, with large effect sizes. Participants valued emphasis on disease-specific education and interactive learning. Future adaptations should better support individuals with limited research experience. The findings informed the decision to establish a dry eye patient research advisory group, the Dry Eye Patient Council.
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