Implementing patient and public involvement (PPI) in eye research: reflections from developing a research study on...

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.

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.

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.