Patient and public involvement and engagement (PPIE): how valuable and how hard? An evaluation of ALL_EARS@UoS PPIE group, 18 months on

Abstract

Background ALL_EARS@UoS is a PPIE group for people with lived experience of hearing loss that was initiated at the University of Southampton. The aims, objectives, and ethos of ALL_EARS@UoS were co-developed and agreed upon. The group has grown in size and reach. A year after inception, we wanted to critically reflect on the value and challenges of the group. Four members of ALL_EARS@UoS were recruited to an evaluation steering group. This paper reports on the application of the NIHR National Standards for Patient and Public Involvement (PPI) to evaluate the impact, effectiveness, and engagement of the group. Methods An anonymous, mixed-methods questionnaire was co-designed and shared with members using an online platform. The questionnaire was designed to capture satisfaction, wider feedback through free-text answers and demographic information. Descriptive statistics have been used to express the satisfaction and demographic data. Reflexive thematic analysis has been used to analyse the free-text responses. Results The questionnaire response rate was 61% (11/18). Areas identified as strengths were ‘Communication’ and ‘Working together’. Five themes emerged from the thematic analysis; (1) Increased knowledge and awareness, (2) supporting research, (3) positive impact on the individual, (4) positive impact on others and (5) running of the group. The data highlighted the value and challenge of PPIE for our members and researchers. Members described feeling valued, listened to, and appreciation for being able to share experiences with other Deaf/deaf or hard of hearing people. Time of day and meeting format, affected accessibility of meetings, were identified as challenges. The ability to secure and maintain sufficient funding and time to support inclusive and diverse PPIE activities is a challenge for researchers. Conclusions We have produced a PPIE action plan and strategy for the next 18 months. We have identified how PPIE has added value to group members and researchers, emphasising the true benefit of PPIE. We have highlighted challenges we are facing and our plan to tackle these. We aim to continue to develop the value of the group and sustain a group that reflects the diversity of the Deaf/deaf or hard of hearing community and of our local community.