“It gives me confidence and value”: evaluating All_Ears@UoS patient and public involvement and engagement (PPIE) group three years on

Abstract

Abstract Background All_Ears@UoS is a thriving patient and public involvement and engagement (PPIE) group that was established in March 2022. The ethos of All_Ears is to create an enduring partnership between researchers and people with lived experience of hearing loss to shape and inform research. This paper describes the findings from an evaluation to measure the perceived impact, value and engagement of the group. The UK Standards for Public Involvement were used as a framework. These include; Communications, Governance, Impact, Working together, Support and learning and Inclusive opportunities. Methods Two surveys were co-designed with members of All_Ears and shared via an online platform to evaluate what was working well and what could be improved from the group members’ and researchers’ perspectives. Each survey combined demographic questions, rating scale questions to measure satisfaction and open-text questions to gather feedback. Descriptive statistics were used to describe the satisfaction and demographic data. Reflexive thematic analysis was used to analyse the free-text responses. Results Strengths aligning to several of the UK Standards for Public Involvement were identified. Thematic analysis of group member responses developed six themes, encompassing the perceived value of the group for research, opportunities for learning and raising awareness, the benefits of the group, aspects that were working well or less well, and considerations around diversity and inclusivity. Four themes were developed from the analysis of researcher responses. Three themes reflected strong support for PPIE within research, while one focused on strengths and challenges in how the group was organised and run. Suggested areas for improvement were to enhance training opportunities to develop skills to support involvement and greater flexibility around meeting scheduling. Group members suggested that a faster reimbursement process is necessary while researchers highlighted a need for increased visibility of public involvement within the University. Conclusions This evaluation has highlighted the perceived value, impact and benefits of embedding enduring PPIE on research and at an individual and societal level from the group members’ and researchers’ perspectives. We hope the findings enable biomedical and clinical researchers to see the value of building partnerships with patients and the public. Clinical trial number Not applicable.