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 patient and public involvement and engagement (PPIE) group for people with lived experience of hearing loss. The purpose of the group is to share experiences of hearing loss and hearing healthcare, inform research and improve services for patients at University...
| Main Authors: | , , , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2024-04-01
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| Series: | Research Involvement and Engagement |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s40900-024-00567-1 |
| _version_ | 1797208990236540928 |
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| author | Kate Hough Mary Grasmeder Heather Parsons William B Jones Sarah Smith Chris Satchwell Ian Hobday Sarah Taylor Tracey Newman |
| author_facet | Kate Hough Mary Grasmeder Heather Parsons William B Jones Sarah Smith Chris Satchwell Ian Hobday Sarah Taylor Tracey Newman |
| author_sort | Kate Hough |
| collection | DOAJ |
| description | Abstract Background ALL_EARS@UoS is a patient and public involvement and engagement (PPIE) group for people with lived experience of hearing loss. The purpose of the group is to share experiences of hearing loss and hearing healthcare, inform research and improve services for patients at University of Southampton Auditory Implant Service. 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 the evaluation of the group using the UK Standards for Public Involvement. Methods An anonymous, mixed-methods questionnaire was co-designed and shared with members of ALL_EARS@UoS using an online platform. The questionnaire was designed to capture satisfaction, individual 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. Group engagement and activity data over time were monitored and collected. Results The questionnaire response rate was 61% (11/18). Areas identified as strengths were ‘Communication’ and ‘Working together’. Five themes were developed from the thematic analysis; (1) Increased knowledge and awareness around the topic of hearing health for group members and wider society, (2) supporting research, (3) inclusivity within the group, (4) opportunity to make a difference for people in the future and (5) running of the group/group organisation. The data highlighted the value and challenges of PPIE. Members described feeling listened to and appreciation of being able to share experiences. Time of day and meeting format were identified as challenges as they affected who could attend the meetings. 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 identified how PPIE added value to both 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 and sustain a group that reflects the diversity of the Deaf/deaf or hard of hearing community and of our local community. |
| first_indexed | 2024-04-24T09:47:35Z |
| format | Article |
| id | doaj.art-54347c4961ed443f9f58e482712ed9c3 |
| institution | Directory Open Access Journal |
| issn | 2056-7529 |
| language | English |
| last_indexed | 2024-04-24T09:47:35Z |
| publishDate | 2024-04-01 |
| publisher | BMC |
| record_format | Article |
| series | Research Involvement and Engagement |
| spelling | doaj.art-54347c4961ed443f9f58e482712ed9c32024-04-14T11:32:20ZengBMCResearch Involvement and Engagement2056-75292024-04-0110111910.1186/s40900-024-00567-1Patient and public involvement and engagement (PPIE): how valuable and how hard? An evaluation of ALL_EARS@UoS PPIE group, 18 months onKate Hough0Mary Grasmeder1Heather Parsons2William B Jones3Sarah Smith4Chris Satchwell5Ian Hobday6Sarah Taylor7Tracey Newman8Clinical and Experimental Sciences, Faculty of Medicine, University of SouthamptonAuditory Implant Service, University of SouthamptonNIHR Research Design Service, University of SouthamptonWessex Public Involvement Network, University Hospital Southampton NHS Foundation TrustALL_EARS@UoS PPIE Group Member, University of SouthamptonALL_EARS@UoS PPIE Group Member, University of SouthamptonALL_EARS@UoS PPIE Group Member, University of SouthamptonALL_EARS@UoS PPIE Group Member, University of SouthamptonClinical and Experimental Sciences, Faculty of Medicine, University of SouthamptonAbstract Background ALL_EARS@UoS is a patient and public involvement and engagement (PPIE) group for people with lived experience of hearing loss. The purpose of the group is to share experiences of hearing loss and hearing healthcare, inform research and improve services for patients at University of Southampton Auditory Implant Service. 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 the evaluation of the group using the UK Standards for Public Involvement. Methods An anonymous, mixed-methods questionnaire was co-designed and shared with members of ALL_EARS@UoS using an online platform. The questionnaire was designed to capture satisfaction, individual 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. Group engagement and activity data over time were monitored and collected. Results The questionnaire response rate was 61% (11/18). Areas identified as strengths were ‘Communication’ and ‘Working together’. Five themes were developed from the thematic analysis; (1) Increased knowledge and awareness around the topic of hearing health for group members and wider society, (2) supporting research, (3) inclusivity within the group, (4) opportunity to make a difference for people in the future and (5) running of the group/group organisation. The data highlighted the value and challenges of PPIE. Members described feeling listened to and appreciation of being able to share experiences. Time of day and meeting format were identified as challenges as they affected who could attend the meetings. 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 identified how PPIE added value to both 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 and sustain a group that reflects the diversity of the Deaf/deaf or hard of hearing community and of our local community.https://doi.org/10.1186/s40900-024-00567-1Patient and public involvementEvaluationHearing lossAudiologyCommunity engagementStandards |
| spellingShingle | Kate Hough Mary Grasmeder Heather Parsons William B Jones Sarah Smith Chris Satchwell Ian Hobday Sarah Taylor Tracey Newman Patient and public involvement and engagement (PPIE): how valuable and how hard? An evaluation of ALL_EARS@UoS PPIE group, 18 months on Research Involvement and Engagement Patient and public involvement Evaluation Hearing loss Audiology Community engagement Standards |
| title | Patient and public involvement and engagement (PPIE): how valuable and how hard? An evaluation of ALL_EARS@UoS PPIE group, 18 months on |
| title_full | Patient and public involvement and engagement (PPIE): how valuable and how hard? An evaluation of ALL_EARS@UoS PPIE group, 18 months on |
| title_fullStr | Patient and public involvement and engagement (PPIE): how valuable and how hard? An evaluation of ALL_EARS@UoS PPIE group, 18 months on |
| title_full_unstemmed | Patient and public involvement and engagement (PPIE): how valuable and how hard? An evaluation of ALL_EARS@UoS PPIE group, 18 months on |
| title_short | Patient and public involvement and engagement (PPIE): how valuable and how hard? An evaluation of ALL_EARS@UoS PPIE group, 18 months on |
| title_sort | patient and public involvement and engagement ppie how valuable and how hard an evaluation of all ears uos ppie group 18 months on |
| topic | Patient and public involvement Evaluation Hearing loss Audiology Community engagement Standards |
| url | https://doi.org/10.1186/s40900-024-00567-1 |
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