From patient to advisor: establishing a patient council for dry eye research

To 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.

Cross-sectional, mixed methods study. August-September 2025.

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.

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.

Quantitative: participant-reported perceptions of the training using 5-point Likert scales. Qualitative: responses to semi-structured interviews.

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, 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.

Participants 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.