From Patient to Advisor: Establishing a Patient Council for Dry Eye Research

Objective To assess the effectiveness of a multiphase training program that jointly prepares patients and researchers for collaboration in dry-eye patient-centered research. Design: Cross-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. Intervention: Participants 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 measures: Quantitative: effectiveness/value of training, self-reported pre- and post-training knowledge gains, using 5-point Likert scales. Qualitative: responses to semistructured interviews. Results Quantitative: 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, .91 and .91, respectively. Qualitative: Phase 1 (Research Fundamentals), informative but occasionally tedious; Phase 2 (Mastering Dry Eye), valued for in-depth content and small-group discussions; and Phase 3 (Research Practicum), valuable, although some participants expressed frustration/low interest. Conclusions This structured, multiphase training program effectively prepared patients and researchers 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. The emphasis on disease-specific education and interactive learning was valued. Future adaptations may be needed to better support participants with limited research experience. The results support the decision to establish a dry eye patient research advisory group, the Dry Eye Patient Council.