Addressing the Public and Patient Involvement gap in vision research: using interdisciplinary approaches to incorporate patient voices into preclinical lab-based research in Dry Eye Disease

Abstract Purpose : There is a significant gap in Patient and Public Involvement (PPI) in preclinical vision research, leading to a disconnect between research outcomes and informing patients and public about research advances.1 A case study on Dry Eye Disease (DED) from South East Technological University, with partners University College Dublin, Instituto De Retina e Diabetes Ocular De Lisboa, and the University of Warwick has been designed to develop stronger connections between patients, carers, clinicians, researchers, and pharmaceutical companies, to drive advancements in PPI in DED research. This can be used as a benchmark for future incorporation of PPI in preclinical ocular therapeutics development across a broad range of vision research. 1https://doi.org/10.12688/openreseurope.16057.1 Methods : The team utilized insights from patient interviews, structured surveys, round-table discussions, and social media listening, gathered from multiple avenues including projects centred on commercialisation, technical, and qualitative research. By combining efforts across individual projects, the group was able to categorize and analyse patient needs, researcher objectives, and clinical outcomes. This approach helped understand DED's severity, impact on daily life, and guided lab-based research toward more effective, patient-friendly treatments. Results : Patient feedback underscored the profound impacts of DED and its treatment on quality of life. The insights can be disseminated to guide the development of longer-lasting, more effective treatments. A round-table discussion encouraged connection to other patients, clinical experts, pharmaceutical researchers, and preclinical, lab-based researchers. This allowed for deeper understanding of the impact of disease on the individual patient and the unmet needs of the Dry Eye community, and was used to shift the approaches of lab-based researchers. Conclusions : The collaborative efforts highlighted the critical need for enhanced PPI in vision and ocular therapeutic research at the preclinical stage. This approach not only addresses the immediate challenges of DED but also sets the stage for development of treatments focused on long-term improvements in patient outcomes and quality of life, demonstrating the value of integrating PPI into preclinical, lab-based therapeutics development.