Building a framework for public and patient involvement in dry eye disease research. A case study

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Aims/Purpose: This study aims to improve bidirectional communication strategies between patients/public, preclinical researchers, and clinical experts to address the lack of effective public and patient involvement (PPI) in preclinical vision research, aiming to refocus research on actual patient needs. Methods: An international team conducted multiple PPI activities, including a critical review on PPI in preclinical ocular research1, World‐café workshops, patient interviews, structured surveys, and round‐table discussions. Dry Eye Disease's wide clinical presentation and impact on daily life were explored. Patient experiences were shared to better understand their needs, increase research value, awareness, and advocacy. Results: Activities highlighted the need for incorporating PPI in ocular research at the preclinical stage. Recurrent themes were identified across patients and researchers. From 20 patient interviews and 50 surveys, 82% responded that they received most information from clinical spaces and were unaware of current research.2 Patients did not know how to become involved in PPI. In a PPI Training Course, 19 preclinical researchers agreed on the need for clearer PPI guidelines and training. Conclusions: PPI activities emphasized DED's severe impact on QoL and the need for new treatments. Round‐table discussions fostered connections and deeper understanding of DED, shifting researchers' focus to unmet patient needs. Further integration of PPI into preclinical research will benefit both researchers and patients. This multimodal PPI approach can benchmark incorporating patient perspectives in preclinical ocular research. Next steps – with patients, create a tool kit for communications skills development for pre‐clinical researchers. References Ames T, Matthews E, Reynolds A et al. How patient/public involvement impacts the research journey – an overview of the visual impairment research field, Open Res Europe 2023, 3: 135. https://doi.org/10.12688/openreseurope.16057.1 . Ames T, Matthews E, Reynolds A et al. ARVO. 2024. Dry Eye Disease as a case study to understand the public and patient involvement gap in lab‐based preclinical vision research using interdisciplinary approaches [Poster].

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