Exploring the purpose and stages of patient and public involvement and engagement (PPIE) in audiology research: a case study approach

This article examines two examples of how patients and the public can be involved in audiology research, to highlight how to optimise such participation and engagement. Patient and Public Involvement and Engagement (PPIE) is essential for capturing diverse perspectives and improving research quality. However, traditional methods for including people, like focus groups, may exclude people with communication difficulties or additional needs. This paper reports on our attempts to develop flexible methods to engage marginalised communities, emphasising the importance of building meaningful relationships with PPIE contributors. Two case studies illustrate PPIE’s role in audiology research. The Hearing Loss and Patient Reported Experience Study (HeLP) developed the first Patient-Reported Experience Measure (PREM) in audiology. It aimed to capture patient experiences with hearing loss and clinical care. PPIE contributors helped shape the questionnaire, ensuring it was relevant and culturally sensitive. An Ethnographic Study of Adults with Dementia and Hearing Loss in Care Homes explored factors contributing to social isolation. The researchers used data from audits, observations, and interviews with residents and staff. PPIE activities included understanding residents’ and staff’s experiences and developing effective communication methods. The study highlights the need for inclusive engagement methods to gather a wide range of views. It emphasises the importance of relationship building and nuanced conversations to inform research design and conduct, ultimately leading to more user-centred and effective audiology research.