A reflection on ALL_EARS@UoS, patient and public involvement and engagement group, 18 months

Hough, Kate, Grasmeder, Mary, Parsons, Heather, Jones, William, Smith, Sarah, Satchwell, Christopher John, Hobday, Ian, Taylor, Sarah and Newman, Tracey (2024) A reflection on ALL_EARS@UoS, patient and public involvement and engagement group, 18 months.

Abstract

Aim: ALL_EARS@UoS is a patient and public involvement and engagement (PPIE) group established at University of Southampton for people with lived experience of hearing loss.

PPIE is a partnership between researchers and people with lived experience which empowers patients and members of the public to contribute to, and influence research and help to make research that is impactful and meaningful. We established a PPIE group so we could work with our members and learn from their experiences to inform our research into the understanding and management of hearing loss. A year after the group’s first meeting, we wanted to reflect on the value of the group for our members and our researchers, and on the challenges, we have come across so we can continue to build and evolve the group and its impact.

Methods: using the NIHR National Standards for PPI (1) as a framework and working with our evaluation steering group, we designed an anonymous questionnaire to evaluate the impact, effectiveness, and engagement of the group. The questionnaire was shared with group members during a 2-week period in May 2023 using an online platform. The mixed-methods questionnaire was designed to capture demographic information about members, feedback/comments through free-text answers and rating scale questions to record satisfaction against statements for the National Standards for PPI. Descriptive statistics have been used to demonstrate the satisfaction and demographic data. Reflexive thematic analysis has been used to analyse the free-text responses.

Results: the response rate was 61% (11/18). Data from the rating scale questions showed our strengths align with the standards: ‘Communication’ and ‘Working together’. Reflexive thematic analysis of the free-text responses identified five themes (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. Group members highlighted that they enjoy sharing their experiences with others and having their voices heard, as well as supporting research. The challenges identified by members were meeting time/format and being able to attend meetings alongside other commitments.

For researchers, funding and time required to support the group are challenges along with the time and effort required to build and maintain a diverse and inclusive group. We have been going into our local community to build trust and encourage involvement in research which has increased and widened the membership of our group.

Conclusion: we have demonstrated an effective way to evaluate the impact, effectiveness, and engagement of our PPIE group using the NIHR National Standards for PPI (2). We have used the data to produce an action plan and strategy for the next 18 months. Proposed actions align which each of the standards to ensure we continue to involve patients and members of the public in a meaningful, inclusive, and worthwhile way. We have demonstrated the value of PPIE in research, community engagement and increasing public awareness around hearing health. We have highlighted the challenges that exist for both researchers and group members, and how we intend to address these going forward. Significant efforts should be made to ensure diversity and inclusivity is not an afterthought in PPIE. We have shown that community engagement is an effective method to meet, involve and engage with a diverse group of people for our research.

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Contributors

Author: Kate Hough

Author: Tracey Newman

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