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Abstract

Background
Awareness of the importance of patient and public involvement (PPI) in ophthalmology research is growing, ensuring studies align with patient priorities and experiences. However, there is limited literature exploring the practicalities and details of how PPI may be conducted within this field. In this case study of PPI within an ophthalmological research project, we aim to provide a transparent, in-depth illustration of how PPI was implemented and helped to shape the Acceptability of Geographic Atrophy INjections (AGAIN) study. The AGAIN study is focused on patients’ perspectives regarding the acceptability of new intravitreal (eye) injection treatments for Geographic Atrophy, an advanced form of age-related macular degeneration.

Main text
This commentary explores how PPI was undertaken to shape the design of the two work packages of the AGAIN study. In work package 1, the AGAIN pilot, we worked with a group of patient advisors to design materials for a mixed-methods questionnaire. This questionnaire consisted of Likert-type scale questions, semi-structured interview questions, and an elicitation task considering different hypothetical treatment scenarios. Eight patient advisors provided their input into the design of this questionnaire, and we discuss examples of the concrete changes to the research materials based on the advisors’ feedback. In work package 2, we carried out several rounds of consultation with patient advisors to develop a pre-validated quantitative questionnaire on Geographic Atrophy treatment acceptability. This involved using ‘think-aloud’ techniques to explore the questionnaire’s validity, clarity, and comprehensibility. We discuss some of the challenges that may arise when taking on board divergent points of view, and how to maximise comprehensibility without compromising fidelity to a validated questionnaire.

Conclusions
Our experience attests to the importance of listening to the insights of patients and those with lived experience in the early stages of designing research, while also ensuring that PPI remains continually integrated throughout the study lifecycle. Our PPI approach evolved in an ad-hoc fashion, and we suggest that given its beneficial impact for our study, PPI should be carefully planned for and adequately resourced in patient-centred ophthalmological research programmes.

Publication Type:	Article
Additional Information:	This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.
Subjects:	R Medicine > RE Ophthalmology
Departments:	School of Health & Medical Sciences School of Health & Medical Sciences > Department of Optometry & Visual Science
SWORD Depositor:	Symplectic Administrator

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