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

Patient and public involvement and engagement (PPIE): how valuable and how hard? 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An evaluation of ALL_EARS@UoS PPIE group, 18 months on Kate Hough, Mary Grasmeder, Heather Parsons, William B Jones, and 5 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-3848030/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 11 Apr, 2024 Read the published version in Research Involvement and Engagement → Version 1 posted 8 You are reading this latest preprint version 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. Patient and public involvement evaluation hearing loss audiology community engagement standards Figures Figure 1 Figure 2 Figure 3 Plain English summary Patient and public involvement and engagement (PPIE) integrates patients and members of the public into the conversations and decisions about the research needed by communities and how it should be done. We have established a PPIE group, ALL_EARS@UoS, for people with lived experience of hearing loss. This is so we can work together and learn from our group members’ experience to inform our research into the understanding and management of hearing loss. We have worked with members to decide the aims, objectives, and ethos of the group. After the group’s first year, we felt it was important to reflect and evaluate the value of the group and the challenges facing members and researchers. We recruited members of the group to work with us to design an evaluative questionnaire. This article describes the findings from the questionnaire alongside an honest account of the value and challenges of PPIE. Our members described many benefits of being involved, ranging from supporting research to being able to share their experience with others in a similar position. A challenge for members is the difficulty in being involved alongside other commitments. A challenge for researchers is the funding and time needed to maintain the group, as well as ensuring the group is diverse in social background as well as experience, and that we are meeting the needs of our members. We report on the ways we intend to address these challenges so we can sustain the group and continue to work together in partnership. Background Patient and public involvement (PPI) refers to research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them ( 1 ). The fundamental principle, which led to public involvement in research, is that people who are affected by the outcomes or process of research have the right to have a say in what, and how, research is undertaken ( 2 ). There is a growing emphasis on involving the public and patients across all stages of the research process. The benefits of PPI across health and social care research are being documented and recognised. Leading UK research funding bodies such as National Institute of Health and Care Research (NIHR) and UK Research and Innovation (UKRI), the body with oversight of a research budget of £8 billion, have indicated the importance and expectation of the active involvement of the public and patients in all stages of the research that they fund. Patient and public engagement is slightly different from PPI, with a focus on ensuring information and knowledge about research is disseminated to patients and the public through mechanisms such as events, exhibits and talks. It is designed to ensure that lived experience influences the design and delivery of research that is of benefit to people. Throughout this paper, we refer to our activity as PPIE to encompass patient and public involvement and engagement. Within the paper, other sources may use the term PPI or PPIE and so when referring to a specific aspect of our work, we will describe it in full as engagement or involvement. Approaches to patient and public involvement include consultation, collaboration, co-production, and patient led/user-controlled research. These involve differing levels of commitment and responsibility. Consultation asks members of a group for their views and uses these to inform decision making. Examples of consultation include discussing research project ideas with patients and the public to find out how relevant they think the projects are, and asking patient and carers to read, and provide feedback on, documents in the research design pathway. Collaboration/co-production is an ongoing partnership between researchers and members of public, where decisions about the research are shared ( 1 ). It is a sharing of power between patients, the public, clinicians, researchers, service providers and policy makers. Examples include PPI members collaborating with researchers to develop a grant application or being involved with interviews with research participants for qualitative data collection. Patient-led research is research that is controlled, directed, and managed by service users and their service user organisations ( 1 ). Table 1 highlights the differences between involvement, engagement, and participation in research. Table 1 Types of patient and public involvement and engagement and participation in research. Involvement: Consultation Asking members for their views and using these views to inform decision making. Collaboration/ co-production Where decisions about the research are shared between researchers and members of the public. Patient-led Where research is controlled, directed, and managed by service users and their service user organisations. Engagement Where information and knowledge about research is provided and disseminated through a range of activities. Participation Where members of the public take part in the research study. The benefits of incorporating PPIE in health research are many and can be valuable for members of the public, patients, researchers, community groups and clinicians ( 3 , 4 ). There is recognition that involvement can improve the quality and relevance of research to patients and the public ( 2 , 5 ). Ethical and democratic benefits include the right of the public to have a voice in how public money is being spent and what research the money is funding. When effective this results in greater transparency and accountability to funders and the public. Patient and public contribution to research proposal development and study design can increase the chance of funding due to the early input from contributors, increasing the clarity, credibility, and relevance of the study. An ethical argument in favour of PPI is that the individual has the right to be fully involved with any health care or research intervention being done ‘to’ them as a person ( 6 ). Public involvement in health research in the UK needs to become more diverse and inclusive. For public involvement to be effective in improving research quality and relevance, and therefore improve health outcomes, the patient and public members/contributors must reflect the diversity of our communities. Recruitment of a diverse and inclusive group of people is a recognised challenge for PPI ( 7 ). Data from the NIHR public contributors’ feedback survey carried out between December 2018 and January 2019, highlighted that the NIHR public involvement community mainly consisted of older white people ( 8 ). Young people and minority ethnic communities were typically under-represented. Younger people made up only 2% (under 25) and 14% (age 26–49) of surveyed public contributors. Only 2% of surveyed public contributors came from Asian ethnic groups and only 3% represented black ethnic groups ( 8 ). The term ‘under-served communities’ refers to the people who the research community need to do more with to provide a better service for. Under-served communities often face barriers in accessing healthcare information and services, as well as accessing, and getting involved, in research. To involve people from a wide range of backgrounds including underserved communities, researchers must make a conscious effort to go out to people, in their own communities, to raise awareness of their research and to invite people to take part. Setting out to work with people with hearing loss/ profound hearing loss adds challenges if meetings are to be inclusive. This very challenge to make them inclusive highlights the barriers that people with hearing loss are likely to encounter when their communication requirements are not considered. Meetings need to be designed to support participation through being accessible for all members, irrespective of their hearing status, to engage and contribute. There is diversity within deafness. The needs and communication methods vary between people who are deaf, Deaf, and hard of hearing. Several communication methods and tools are used by d/Deaf and hard of hearing people including lip-reading, British Sign Language (BSL), Sign Supported English and the use of assistive technologies such as hearing aids and cochlear implants. D/deafness can co-exist with other sensory disabilities, including poor or little sight. Adjustments need to support participation in meetings and other activities. Language service professionals including sign language interpreters, captioning/note takers and the use of deafblind manual can help bridge what is otherwise a communication gap. Our goal is to create an active and enduring PPIE group, whereby a partnership is created between researchers and patients and people with hearing loss, parents, and carers which empowers the members of the group to contribute to, and influence, the research being carried out to benefit people with hearing loss and their families. We aspire to establish and sustain a group where there is mutual reward, respect, and benefit for all members of the group. The main drivers of this work are to increase public awareness of hearing loss and hearing healthcare; the use and value of assistive technologies such as cochlear implants; access to cochlear implants and to improve hearing outcomes for people with hearing loss and/or a cochlear implant. We approached the NIHR Research Design Service in November 2021 to determine whether funding existed to establish a hearing loss PPIE group. This led to support from PPI officers within NIHR to enable us to start to develop our PPIE strategy. We recognised there was not generic funding available at that time, which highlighted the importance of including appropriately costed applications for research bids that would benefit from a well-developed hearing loss PPIE group. Funding at the early stages of PPIE is essential to facilitate the time commitment to develop and grow relationships, to manage the administration of a successful group and to reach out into the community. The notion of a group was first advertised to patients at the University of Southampton Auditory Implant Service (USAIS) in March 2022 through twitter, the USAIS website, and flyers in the clinic reception area. Our first meeting, with 8 group members, was held in May 2022. Between May and December several more meetings were held, with a steady increase in number of members in the group. By December 2022, it was clear that there was value to the group members and that we needed to expand and broaden the membership. We advertised through local support groups, social media and at local community groups in a small, funded community-engagement project. Meetings in January, May and July 2023 saw 12–14 members participating. By July, 10 of the group members were people who had joined after discovering the group through our community engagement and outreach activities. As the group developed and evolved, we worked with members of the group to co-design and establish the elements of the group. These included the group name [ALL_EARS@UoS], the logo, ethos, aims and objectives all of which was written up and agreed in a terms of reference document. Our aims are to work with the group members to identify and prioritise the most relevant research and to involve members at all stages of the research process. To support this, we have held a training and information session about the complexities of the research process and highlighted all the points where members could get involved through this process. By taking the time to learn about our group member’s experiences we are starting to be able to identify the issues that are most important for people living with hearing loss. We want to turn these issues into research questions then turn these into research projects. We aim to sustain the group by ensuring that researchers and health care professionals are aware of the group, and that they approach us early in their research planning. We have established a framework to describe how researchers can work with members of our group including how researchers can share ideas and receive feedback from members of the group about project ideas. We ask that researchers build appropriate levels of costings for PPI into research applications, consider giving some of their time to support PPI and to think about how they can support the group to be recognised more widely. Aims We aimed to evaluate the impact, effectiveness, and engagement of the PPIE group ALL_EARS@UoS using an anonymous questionnaire. The data was used to produce a PPIE action plan. Members of ALL_EARS were invited to be part of the evaluation steering group and be involved at all stages of the evaluative research process. The questionnaire was designed with the collaboration of the entire steering group using the NIHR National Standards for Patient and Public Involvement (PPI) as a framework. Everyone who was a member of ALL_EARS at the time of the survey in May 2023 was invited to complete an online, anonymous questionnaire. Our objective was to gather data to report on the development, progression, and effectiveness of ALL_EARS PPIE group in peer reviewed and grey publications. Methods Establishing the PPIE group The people who have joined ALL_EARS@UoS have lived experience of hearing loss and/or cochlear implants. This could mean personal experience of deafness/hearing loss or of wearing a cochlear implant/s. Equally it could mean a partner, family member, parent, or carer of someone with deafness/hearing loss or someone who has a cochlear implant/s. There is diversity in the severity of hearing loss/deafness between group members, this is exemplified by some people wear a hearing aid/s, some have a cochlear implant/s, some wear both a hearing aid and cochlear implant and some people wear neither but may have a hearing dog. PPI was used in the development of the group, where the group’s aims, objective, ethos, and roles/responsibilities were established and agreed upon with the group, as the group grew and developed. Currently, the nature of involvement with our group is a combination of consultation and collaboration. Our goal is to reach an optimal level of involvement which is co-production of research. Evaluation of the PPIE group Planning and questionnaire design For the formal evaluation of the group, ALL_EARS members were invited to join the evaluation steering group. Four group members agreed to join (two members subsequently left the group at data analysis stage due to increased family commitments). Steering group members were involved in the design and development stages of the evaluation by suggesting questions to include and topics to cover and through multiple iterations of the draft questionnaire. Using the feedback, alongside the NIHR standards for PPI ( 9 ), a full draft of the questionnaire was produced and circulated to the steering group. There are six distinct standards identified in the NIHR national standards for PPI. These include communication, governance, impact, working together, support and learning, and inclusive opportunities ( 9 ), as outlined in Table 2 . These standards provide a benchmark for researchers to work towards to ensure effective patient and public involvement. The standards were produced collaboratively by researchers, funders, public partners, and involvement practitioners from organisations from Scotland, Northern Ireland, Wales, and England ( 10 ) The National Standards for Public Involvement have been used to design and structure a process for reflection on, and evaluation of, PPI ( 11 – 13 ) To evaluate our progress against the standards, we used a series of statements which aligned to the standards to generate the questionnaire. For example, for Communication – the following statements included: There are clear and informative communications about upcoming meetings, written work, and activities. There are regular opportunities to offer feedback about meetings, project ideas and activities. My feedback is gathered, acted on and shared back to the group. The group members were asked to use a rating scale to identify how much they agreed with the statements from Strongly agree, agree, neither agree nor disagrees, disagree, and strongly disagree. Table 2 NIHR National Standards of Patient and Public Involvement (PPI) ( 9 ). NIHR National Standards for Patient and Public Involvement Communications Use plain language for well-timed and relevant communications, as part of involvement plans and activities. Governance Involve the public in research management, regulation, leadership, and decision making. Impact Seek improvement by identifying and sharing the difference that public involvement makes to research. Working together Work together in a way that values all contributors and build and sustains mutually respectful and productive relationships. Support and learning Offer and promote support and learning opportunities that build confidence and skills for public involvement in research. Inclusive opportunities Offer public involvement opportunities that are accessible and that reach people and groups according to research needs. Ethics Ethical approval for the questionnaire was granted by the University of Southampton Ethics Committee, reference number ERGO/FEPS/ 81056. Consent Before completing the questionnaire, participants were asked consent to taking part in the questionnaire. Participants were also asked to consent to the anonymous data being collected and used for the evaluation of group and to be shared through publications, social media and with other clinical centres. Questionnaire administration The anonymous finalised questionnaire included a combination of questions that asked participants to; produce a rating; complete free-text answers and demographic self-identification using a check box list. The questionnaire was produced using Microsoft Forms. Members of the PPIE group were invited to complete the questionnaire online within two weeks of it being made available. Questionnaire analysis Once the questionnaire was closed to new responses, a researcher in the team completed an initial analysis of the data to draw it together before sharing with the group. Two thirds of the members of the steering group generated commentary on the data, this included interpretation the free-text responses in each section of the questionnaire. Descriptive statistics including counts and percentages were used to describe the data from the rating scale questions. Free-text answers were analysed using reflexive thematic analysis. The themes were discussed with the group. The findings of the work have been formatted to align with the GRIPP2 Long Form ( 14 ), this has been used to structure the content of this paper [see additional file 1]. Results Positive outcomes of the PPIE group Co-development of the group After the group was first advertised, we had an initial, small group of interested members who attended our first meeting in May 2022. We worked with the group and subsequent new members over the following months, to co-develop and build the group. Group facilitation supported the discussion and establishment of the aims and objectives of the group at a meeting in September 2022. Through group working we co-edited a paragraph written by a member of the group which outlined the group and the group’s aspirations. This text is displayed on the front page of the group website ( 15 ). Several group members responded to a request to suggest names for the group. These were collected and an anonymous poll was used to enable all members of the group to vote to select the preferred the name. A similar process was used to generate a logo for the group. Drawings produced by group members were turned into electronic graphic images and a poll run to identify the most popular image. Group members/attendance Between May 2022 and September 2023, we held eight in-person meetings. Typically, 12–14 members attend each meeting. Table 3 highlights attendance for each meeting alongside recruitment information for those attending. Name and number of attendees for each meeting is recorded, no identifiers are used in any of the reports. Table 3 Breakdown of number of attendees for each meeting held. Number of meetings Date of meeting Total attendance Breakdown of attendees New members Patients at USAIS Recruited through adverts (not patients) Recruited from local community 1 03/05/2022 9 9 8 1 0 2 22/06/2022 5 1 5 0 0 3 23/09/2022 6 2 5 1 0 4 23/11/2022 7 0 6 1 0 5 06/01/2023 12 6 9 3 0 6 10/05/2023 14 10 4 0 10 7 11/07/2023 14 3 5 0 9 8 18/09/2023 12 1 3 0 9 Data highlighting the number of meetings held, the number of members in attendance and information regarding where the members were recruited from (e.g. patients or through community engagement). Supporting research We have had valuable contributions to several research projects where members of the group have been involved in the design and implementation stages of the projects. This involved the discussion and development of project ideas and plans and reviewing protocols and patient facing documents. One group member contributed to the panel meeting for external ethical approval (Integrated Research Application System [IRAS]). We have had PPI involvement in various research grant applications. This has involved discussing and sharing the initial ideas and rationale for proposed pieces of work, opportunities to review applications and involvement in a video submission for an external funding application. Members of the group have provided a letter of support for grant applications. Through learning about different group member’s experiences of getting their cochlear implant and the challenges some faced, a new project idea emerged whereby we set out to evaluate the barriers and facilitators to cochlear implantation in a population of patients from USAIS who are over 60. The findings from this study have been presented at a national hearing meeting and are now being written up for publication in a peer-reviewed journal. Public engagement Members of ALL_EARS@UoS have been involved with a diverse range of public engagement activities and events. In July 2022, a member of the group and a researcher gave a joint presentation reflecting on the process of the developing the group at an event called Working together: A training workshop on participatory and co-produced research. We have jointly staffed an exhibit about hearing and cochlear implants at University of Southampton Science and Engineering Festival in March 2023 and seven members of the group volunteered their time to run the exhibit alongside a researcher and raise awareness of hearing loss to members of the public of all ages. We took the same exhibit to the New Forest and Hampshire County show in July 2023, where three members of the group ran the exhibit alongside the researchers. Outcomes from the evaluation The response rate for the survey was 61% (11/18) of the PPIE group members. Demographic data including age, gender, and ethnicity, was captured to determine how the population of our group relates to the population of patients at USAIS and of the population within the catchment area for the service. Collecting this data early in the lifetime of the group enables us to consider whether and how we might improve diversity within the group. All respondents were > 30 years old, with the majority aged between 50–79 (73%, (8/11)). 9% (1/11) of respondents were under the age of 50 and 18% (2/11) of respondents were over the age of 80. 64% of respondents were female and 36% were male. The ethnicity of most respondents (91%, (10/11)) was white (English, Welsh, Scottish, Northern Irish or British, Irish, Gypsy or Irish Traveller, Roma, any other White background). The ethnicity of 1 participant was Black (Black British, Caribbean, African, Any other Black, Black British, Caribbean, or African). 45% (5/11) of respondents described themselves as ‘Retired with several community commitments e.g. ALL_EARS, member of school or other community board’. 36% (4/11) of respondents described themselves as employed, two of whom work full-time and two part-time. 18% (2/11) respondents described themselves as ‘Retired with one community commitment e.g. ALL_EARs’. All respondents selected their primary/native language as English. Table 4 Age, sex, and ethnicity data for respondents, USAIS patient population and the South of England. Group ALL_EARS questionnaire respondents USAIS Patient Population a South of England b Age Under 30 0% 26% 34.5% 30–50 9% 23% 26.2% 51–80 73% 45% 34% Over 80 18% 5% 5.3% Sex Male 36% 40% Female 64% 60% Ethnicity White 90% 90% 89% Black 10% 5% (5% no data for) 1.9% Asian - 5.4% Mixed - 2.5% Other - - 1.2% a Data were extracted from a service evaluation which sourced from USAIS electronic patient records of all patients at USAIS who received a cochlear implant until 2020. (ERGO II: 76664) b Data were extracted from 2020 ONS Clinical Commissioning Group (CCG) population estimates ( 16 ) and using data collected from the UK census 2021 databases ( 17 ). The group demographic at the time of the survey was similar to that of the patient population under the care of USAIS. Table 4 summarises the demographic data of questionnaire respondents compared to USAIS patient population and to the Sound of England. Around 90% of USAIS patients describe themselves as White (British) or White (any other white background). 5% of USAIS patients described themselves as either Asian, Black, or Mixed ethnicity (for around 5% of USAIS patients, their ethnicity is documented as unknown). Around 60% USAIS patients are female and 40% are male and 26% of patients at USAIS are under 30, 23% are aged 30–50, 45% are aged 50–80 and 5% are above 80 years old. While this reflects our group in that the largest proportion of people are aged between 50–80 years old, it is clear that we need to increase our efforts to make the group relevant to people under the age of 30 as people in this group are also affected by hearing loss This need remains the case when we consider the age and ethnicity of the South of England, our primary clinical catchment area. Current data identifies that around 89% of people are White, 5.4% Asian, 1.9% Black, 2.5% Mixed and 1.2% Other. A similar assessment of the population by age shows 34.5% of people are under 30, 26.2% are aged 30–50 years old, 34% of people are aged between 51–80 and 5.3% of people are over the age of 80. We aspire to develop the demographic of our group to relate more widely to the South of England area regarding age and ethnicity. Following a suggestion from a steering group member, we included a question to determine whether respondents had prior knowledge of deafness or the deaf community before developing hearing loss (or a family member/partner having hearing loss). 78% of respondents (8/11) responded no and 22% (3/11) responded yes. Evidence from rating scale questions There was a positive response to most rating questions, as summarised in Figs. 1 and 2 , where for many of the responses either strongly agreed or agreed with the statements. Figure 1 displays the statements included for Communication, Governance and Impact and the percentage of respondents that selected each response. Figure 2 displays the statements included for Working together, Support and learning and Inclusive opportunities and the percentage of respondents that selected each response. A few responses were neither agree nor disagree, suggesting ambivalence and that more work needs to be done to convince the group that we are achieving these standards. The standards include communication, governance, and impact. The standards include working together, support and learning and inclusive opportunities. Evidence open-text questions - Reflexive Thematic Analysis Four open-ended questions were included in the questionnaire: 1. What worked well? 2. What areas would you like to see improvements on? 3. What do you see as the impact of being involved within this group? 4. Describe any benefits of bring part of ALL_EARS@UoS. Reflexive thematic analysis was carried out on the free-text responses following Braun and Clarke’s six phase process ( 18 – 20 ), ( 1 ) Familiarising yourself with the dataset ( 2 ) Coding ( 3 ) Generating initial themes ( 4 ) Developing and reviewing themes ( 5 ) Refining, defining, and naming themes ( 6 ) Writing up ( 21 ). This approach is flexible but robust and well established for the analysis qualitative data. The aim was to determine what areas are important for the members of the group. Inductive coding was used whereby there were no pre-determined codes. A set of codes were developed based on the review (reading and rereading) of the data. A schematic highlighting phases 1–3 is included as additional file 2 in supplementary information. The initial themes (as shown in Fig. 3 ) were then developed and reviewed in phase 4 to give five refined (indicated in bold in Fig. 3 ). The initial codes from each open-ended question were assigned to initial themes which are included in each grey box above. These initial themes were developed and reviewed during phase 4 and then refined and assigned into five refined themes (highlighted in the white boxes with bold text) during phase 5. Five themes emerged from the dataset (Table 5 ) which include: ( 1 ) Increased knowledge and awareness (around the topic of hearing health for group members and wider society), ( 2 ) supporting research, ( 3 ) positive impact on the individual, ( 4 ) positive impact on others and ( 5 ) running of the group/ group organisation. Several of these themes are comprised of subthemes. Table 5 Themes and subthemes. Theme Subtheme 1. Increased knowledge and awareness of hearing and cochlear implants 1.1 (Increased) knowledge to individual and society 1.2 Raising awareness (of hearing loss and cochlear implants) for the individual and society 2. Supporting research 3. Positive impact on the individual 4. Positive impact of the group on others 5. Running of the group/ group organisation 5.1 Aspects of the running of the group that are going well 5.2 How we could improve the organisation or running of the group Theme 1: Increased knowledge and awareness of hearing and cochlear implants This theme is about how group members felt the group, or their involvement in the group, has led to an increase in knowledge and awareness to themselves or wider society. This theme has two subthemes related to firstly knowledge and secondly raising awareness. Subtheme 1.1 (Increased) knowledge to individual and society Group members commented on the opportunity to learn new things as being a positive outcome of the group such as an ‘increased (my) understanding of research and how it all works’ as well as the opportunity learn from the group to then pass on the ‘important information for my community’, particularly around ‘what help is offered’. I learn new things about cochlear implants and hearing loss whilst helping to raise awareness. ‘It has been helpful to find out more for my chats to others with hearing loss as part of the bigger picture’. Some group members discussed the need for further learning/education in ‘understanding the practical difficulties of being hard of hearing and elderly’ and in ‘explaining signal processing aspects of deafness’. Subtheme 1.2 - Raising awareness (of hearing loss and cochlear implants) for the individual and society This subtheme has two main elements; the need for increased awareness (which the group aims to address) and the positive impact of the group in increasing awareness of hearing loss and cochlear implants. Many responses emphasised the need for increased awareness around hearing loss and the impact on the individual, as well as a need for much better awareness of cochlear implants. This appears to be a driving force for the involvement of many members of the group. A key reason why we need to raise awareness was to give people a better understanding of the challenges and impact people with hearing problems experience ‘to help people understand the problems that are faced by the deaf community’. ‘Raising awareness of hearing loss so people have a better understanding of it and take into consideration how it can affect people’. Better awareness and knowledge of cochlear implants will be key in increasing access to cochlear implants, which is a shared driver of our group. One respondent discussed the importance of ‘reaching out to deaf people and parents of deaf children who know little or nothing of cochlear implants and their availability’. Many responses highlighted the positive impact of the group in raising awareness of hearing and cochlear implants for themselves and in wider society. ‘Raised my awareness of the barriers some people face in terms of getting a cochlear implant’. ‘and also our work has raised awareness of hearing issues within wider society’. ‘we raised awareness amongst a lot of people, spreading the word about implants particularly to older people through going out to groups’. Some respondents looked forward to further impact of the group in continuing to raise awareness as the group develops and builds in the future. ‘There is certainly scope for the group to have more impact on wider society as it develops in numbers and confidence’. ‘I hope our impact will develop as we provide opportunities to further education on hearing loss (UoS Science Open Day and Winchester Science Centre)’. Theme 2 - Supporting research Several responses reflected the perceived benefit or positive impact of the group in ‘supporting research and development opportunities’ which would then go on to benefit those with hearing loss or wider society. ‘Difficult to know but I'd like to think that the work we've done collectively has helped in terms of creating research projects which in turn will have an impact on those with hearing loss’. ‘The opportunity to contribute to research topics which will, in turn, benefit wider society’. Group members discussed the opportunities to contribute to research by ‘suggest(ing) changes to formal documents to better reflect the lived experience’ as well as offering ‘the academic members suggestions for the thrust of their work’. One group member described it to be ‘stimulating to be visited by members of the research community e.g. Tracey and Helen and invited to comment on and add to their plans’. Theme 3 – Positive impact on the individual Several group members highlighted the feeling of being valued and listened to, after years of potentially not feeling listened it (due to their deafness). ‘I've been losing my hearing for 20 + years and this is the first time anyone has asked me for my opinion. It genuinely feels like we're listened to, and our comments are valued and appreciated. It feels like the group is building momentum, and going forward has the capacity to have an impact and make a difference’. ‘Encouragement to speak out and listen, using my implant to its full ability. The confidence to participate in discussions after many years of being mostly excluded from conversation’. Group member’s responses indicated a sense of good, welcoming feeling towards all members of the group and discussed a feeling of belonging. This aligns with NIHR standard ‘Working together’ which emphasises working together in a way that values all contributors and builds and sustains mutually respectful and productive relationships. ‘To be in a group of your peers with researchers who are very understanding and encouraging is very fulfilling’. ‘All the preparation work, and keeping patient involvement in that, has given us all a sense of belonging and an aim of making the group a success’. There is a positive feeling within the group due to the ‘common goals’ and collective good wishes. The company and interactions of people with similar or complementary wishes for the deaf community. In addition, multiple responses highlighted the benefits of sharing experiences with a group of people, and ‘talking to other people about their journey of hearing loss and a cochlear implant’ and the benefits ‘getting a wider diversity of people involved’. This also links to the inclusivity aspect of theme 5. One member commented on their ‘improved my confidence in terms of getting involved with things’. Theme 4 – Positive impact of the group on others A number of responses highlighted the intent of the group in making a positive difference for people who may experience deafness in the future. One member felt they wanted to ‘be part of changing things for the future, and (feel) that the group provides that opportunity’. ‘Make a difference in my community and encourage people to get involved’. ‘I have had a lifetime of involvement with severely deaf people, throughout which I have seen well-intentioned but sub-optimal efforts to educate them and care for their welfare. I hope that and my technical skills can be used to improve their lot and help those who will become deaf in the future’. One member felt the group provided an ‘opportunity to shape the future of hearing services, medical studies and outcomes’. Theme 5 - Running of the group/ group organisation Many responses related to the organisation and structure of the group, where members of the group commented on either positive aspects of the organisation or suggestions of how the organisation and structure of the group could be improved. This theme splits into several subthemes which include: Subtheme 5.1 Aspects of the running of the group that are going well Feedback suggests members of the group are satisfied with the ‘communication’ and the structure and organisation of the group. Communication is one of the six standards for PPI which states the importance of plain language for well-timed and relevant communications, as part of involvement plans and activities. One response said, ‘The arranging of meetings and communications about what the targets for the meeting are done professionally’. ‘The meeting I attended was very well structured’. ‘The discussion groups have worked well where we go into small groups and then bring out ideas together at the end’. Subtheme 5.2 How we could improve the organisation or running of the group Some suggestions were for how we could improve the organisation or running of the group. The suggestions related to a range of areas including structure, inclusivity, and level of involvement. Suggestions for improving the structure referred to practicalities for how the meetings are scheduled and organised and how long the meetings are run. ‘From my perspective, I'd like to have some meetings scheduled in the calendar for the coming year’. ‘An extra half hour added to the meetings, so the agenda isn't so rushed at the end’. ‘Possibility to create smaller subgroups to focus on specific things’. As we are a group with many people with lived experience of hearing loss, ensuring all members of the group have equal access to the information and discussion during, and after, the meetings are always carefully considered. We only hold our meetings in a room with suitable lighting and space, with microphones connected to a loop system. We also provide live captioning in each meeting. Several comments around improving accessibility were related to the times and format of the meetings i.e., whether they are online or in person. To date, we have only held in-person meetings. However, one response highlighted the potential benefit of holding some online meetings which will be included in our action plan. ‘We talked at the beginning about meeting times and whether in person or video. I may be the only person who has missed a couple of meetings but would like to ensure I can be present, so I contribute effectively’. In addition, up until now, we have held meetings from 10am – 12 noon, following a survey given to members during the early stages of the group which indicated a preference of mid-morning meetings. However, mid-morning meetings limit some groups of people from attending such as people who work full-time. A suggestion from a group member was that ‘The meetings could (to) be more accessible for people who work. This could also increase the number involved in the group’. These responses align with the NIHR standard ‘Inclusive Opportunities’ which states that public involvement opportunities should be accessible and should reach people and groups according to research needs ( 9 ) . A further suggestion for ways we can improve how we organise the group included better, and more complete, feedback during and following involvement. ‘Where members have been or are being involved, it would be good for others to get feedback on how things are going and where things have changed as a result’. It is key in PPI to complete the feedback cycle, so group members/ public contributors know the impact of their involvement and to know their thoughts/opinions have been acknowledged and listened to. One response highlighted the importance for ‘ more opportunities to collaborate and share outputs, data and insight from the work to educate and drive continuous improvement in this field’. Level of involvement A couple of responses suggest there may be an imbalance regarding expectations for what a group member’s level of involvement should be. One response suggests that group members should be prepared to get involved further with various tasks and meetings. ‘Those who attend the group, in whatever way, being prepared to respond to requests to be involved in research e.g. through questionnaires, structured interviews etc. as well as discussion. I can quite understand that being involved in being a lay responder to research funding requests might well be too daunting for many’. It would be helpful if more people were prepared to come to more meetings so people can develop confidence in working as a group. I quite understand it is early days for this at present. Governance As we are still in the relatively early stages of this PPI group, we opted to include questions that we would like to ask in the future around Governance and asked respondents to share their thoughts on this area. The four questions were: ( 1 ) Public involvement plans are in place and these plans are regularly monitored, reviewed, and reported on. ( 2 ) Throughout the organisation, there is visible and accountable responsibility for public involvement. ( 3 ) Realistic resources such as money, staff, time are allocated for public involvement. ( 4 ) The privacy of personal information is protected by collecting and using it in a suitable way. We received a selection of comments related to these statements, several of which acknowledged the effort and resources we have put into this work ‘Looking at the development of the membership of All Ears it is obvious that great efforts have been made to involve a broader range of people’ and ‘At the All_Ears level, there is a great feeling that finance and resources are being put into genuine PPI’. Some comments suggest that was some uncertainty around ‘where All_Ears sits in relation to PPI in other branches of The University and the Southampton Hospital/Medical School. Thus I am uncertain where the thrust to promote the approach is coming from’. This suggests further discussion and transparency is required with our members about the structures in place to support the PPI. Discussion This paper describes the evaluation of the impact, effectiveness, and engagement of the PPIE group, ALL_EARS@UoS using the NIHR National Standards for PPI as a framework. Overall, the strongest satisfaction was seen in responses to the statements related to communication and working together. Five themes emerged, these centred on increasing knowledge and awareness around hearing loss and cochlear implants, supporting research, the positive impact of the group on the individual as well as for wider society and how we organise the group. The responses suggest members value being part of the group and feel valued by researchers and other members of the group. Areas that require improvement and continual attention are increasing and improving diversity and inclusivity within the group. With the growing need and expectation for PPIE within research comes a growing need to evaluate, reflect, and report upon current practice to inform and enhance future practise. A recent qualitative systematic review and thematic synthesis that explored the experience of patient partners in public involvement identified seven themes ( 22 ). These included “motivations to engage in research”, “activities in patient engagement”, “structure”, “competence”, “team dynamics”, “impacts on broader life”, and “illness”. Many of the motivations to engage in research such as the desire to help others, to contribute to better research and have their voices heard ( 22 ) overlap with what we found. ‘Structure’ and how the PPI is organised was another key area of importance which reflected both positive and negative patient experiences. This was also found in our evaluation. The importance of effective communication is a commonly discussed area in PPI evaluation ( 23 – 25 ). The frameworks, tools, and methods for evaluating patient and public involvement are growing rapidly. The international literature evaluating the impact of PPI has tripled in the last 10 years ( 26 ). A scoping review of methods to measure and evaluate citizen engagement (i.e. partnering with members of the public) in health research identified a variety of methods including frameworks, discussion-based methods, survey-based and other methods ( 27 ). These methods commonly focused on gathering perceptions of those involved, often focused on empowerment, impact, respect, support, and value ( 27 ). A recent systematic review identified 65 different frameworks designed to map, evaluate, or report on PPIE ( 28 ). These frameworks fit into five main categories; power-focused, priority setting, study focused, report-focused, partnership focused. We used the National Standards for PPI to structure this evaluation ( 11 – 13 ). Our reasoning included that we could then use the same structure to form the basis of the action plan that would emerge from the evaluation. Additionally, we have used the evaluation as an opportunity/platform to inform group members of the National Standards for PPI to ensure we are being transparent about the expectations of effective PPI. We have always aimed to be upfront and honest with our group members about the aims and intention of our PPIE work including the standards we aim to align to. Further adoption of the national standards for PPI would facilitate the comparison of successes and challenges across regions, nationally and internationally. A limitation of our evaluation was that we did not have a version of the questionnaire for researchers/ PPI team to complete to evaluate the impact, effectiveness, and engagement of the group from researchers’ perspective. Going forward, this will be essential to implement. The Public and Patient Engagement Evaluation tool (PPEET) is a selection of anonymous questionnaires developed collaboratively by researchers, patients, and members of the public ( 29 , 30 ). There are three types: a participant questionnaire, a project questionnaire, and an organisation questionnaire. (Note. in Canada, patient, and public involvement is referred to as patient and family engagement). PPEET was developed as an evaluation tool that is user-friendly, generic and aspires to standardise evaluation. The international standardisation of this approach and the availability of both a pre-designed participant questionnaire and a project questionnaire for researchers and PPI professionals to complete are both strengths of this tool. We will consider this for future evaluation. How valuable? The value of fully incorporating PPIE into the work we do has been significant and wide reaching. We have had beneficial contributions to several research projects, where members have been involved in the design stages of projects and involved in reviewing project documents. This has improved the clarity, readability, and content of the documents. A limitation of our PPI is that for some projects, we were unable to involve group members in the ideas/planning stage due to time constraints and short windows for grant funding calls. We aim to involve members as early as possible where permitted. For members of the group, there has been great personal value and impact as highlighted in the qualitative data collected in the questionnaire. We have created a group where there is mutual trust and members feel valued and empowered to share their experiences as evidenced through group member’s involvement in public engagement events like at the University of Southampton Science and Engineering festival. Truly valuing group members unique knowledge and lived experience, and how this will contribute to the research, is essential ( 31 ). A variety of positive outcomes of being involved in research on the public have been described including new skills and knowledge, personal development, and new support/friendships ( 2 , 32 ) PPIE is valuable for researchers and research students in developing their effectiveness and expertise in research and science communication. It provides an opportunity to develop interpersonal skills and the skills required to organise and facilitate meetings and events. Importantly it allows researchers to learn about their research area/health condition from the perspective of people with lived experience ( 32 ) which enables the development of a deeper understanding, often otherwise largely theoretical, of a health condition. To gather the perspectives of researchers in our group, we will evaluate the value and the challenges using a similar questionnaire as described in this article. Through establishing ALL_EARS@UoS PPIE group, we have been able to bridge the gap between the university and community by working with members of our local community and learning from their knowledge and experience. This is a priority at University of Southampton as we are part of a Civic University Agreement ( 33 ) meaning we are committed to improving the lives of those living in our local area by engaging with them through different educational, enterprise, and cultural activities. Through going out into our local community, we have successfully recruited several people to join our group, increasing their opportunity to be heard and the cultural and ethnic diversity of the group. Co-designing and co-delivering exhibits at public engagement events with members of the group, has developed new ways for us to share knowledge about our research with members of our local community. How hard? Involving a diverse group of people who will represent different communities is essential for PPIE to be truly effective. Many groups in our society are considered underserved or ‘seldom heard’ ( 34 , 35 ). Common characteristics of people in underserved groups include lower inclusion and involvement in research compared to other groups, key differences in how the group accesses, engages with, and responds to, existing healthcare interventions compared to other groups and high healthcare burden that is not matched by the volume of research carried out for the group ( 36 ). Some examples include minority ethnic groups, socioeconomically disadvantaged groups, people in alternative residential circumstances (e.g. migrants, asylum seekers, the homeless and prisoners), people with a physical or learning disability and carers. Barriers to inclusion and involvement include physical disability, lack of trust and interest in trials and health research, cultural barriers, and specific health fears. It is our responsibility as researchers to work to break down the barriers. The demographic of our group at the time the evaluation was not very diverse (majority white and over the age of 50) and most group members were recruited through being a patient at USAIS. We were aware this was not representative of our local area as well as not a diverse group of people in terms of their experience of hearing loss. We have used community engagement as a method to break down physical barriers by going to people where they are in the community and by investing time to build trust. Through visiting local community groups and getting to know members of the community by getting involved with activities they already enjoy and participate in; we have been building trust and creating a more equal partnership which is key for effective involvement and engagement. A similar approach where there was a clear focus of how to build trust and relationships, how to conduct acceptable and inclusive activities and how to maintain reciprocal relationships was discussed by Jameson et al ( 37 ). At the time of writing, 40% (16/40) of our existing group members have been recruited through community engagement. Therefore, our group is a better representation of our local community. We now have members who have different types of hearing loss, who wear hearing aids or cochlear implants (or both or neither), as well as people who are interested and want to support their families and communities by being involved with hearing loss research. Further improvements are needed with regards to how diverse the group is within deafness. This was highlighted in the questionnaire ‘The group is a true representation of the Deaf or hard of hearing community’ (Fig. 2 ). We currently don’t have any members from the Deaf community who communicate solely by sign language. Over time, when we re-evaluate the group, we anticipate a more diverse demographic and a higher number of responses, due to the gradual increase in group attendance. Diversity and inclusivity should come hand in hand. Having diversity within PPI without inclusivity is poor. Inclusivity means a combination of acknowledging and valuing differences whilst also promoting equity. Inclusion is as an active verb; something we must do to ensure people have equal access to the information, meetings, and group. A challenge we faced was creating an inclusive group and ensuring we met each member’s accessibility needs. Many group members have different levels of hearing loss and use a variety of hearing interventions and communication approaches. For communication between meetings, all members were asked to share their communication preferences when they joined the group such as via email, phone calls or text messaging or letters. In every meeting, we have a note taker present and live captions are projected onto a screen, which allow members to glance at the screen and follow what is being said. The rooms we use have multiple screens to allow for projection of live captions as well as any slides for the meeting. The rooms also have a hearing loop system which is connected to the microphones we use. When we have members attending who communicate using British Sign Language (BSL), we have a BSL interpreter present. A significant challenge is the cost to support these accessibility needs which are on top of the cost of involvement fees and travel expense that are offered to all participants at each meeting. A regular funding source is necessary for sustainable, enduring, and inclusive PPIE. As well as accessibility costs, funding is required to pay for involvement fees and travel expenses ( 38 ), staff time ( 39 ), materials and refreshments. PPIE needs to be accurately costed into each research grant. A systematic review exploring the theories, barriers, and enablers of PPI across health, social care and patient safety identified financial compensation and resources as a key area to consider ( 40 ) There is an underreporting of the costs related to PPI and evidence of any economic analysis of the costs in the literature ( 32 , 41 – 43 ). The importance and challenges of carrying out PPI cost evaluation has been discussed ( 44 ). Using established economic evaluation methods for PPI has limitations as outcomes for PPI cannot be expressed as quantifiable entities ( 44 ). In addition, we cannot solely focus on outcomes of PPI, as the process including the trust and relationships formed are equally as important. This is likely contributing to the apparent disconnect or lack of understanding of the true costs or budgets that are required for inclusive and enduring PPIE by both funding bodies and researchers. The time needed to establish and support an enduring PPIE group is another challenge. Building trust and relationships with group members, organising, and running regular meetings and maintaining communication all take time. It is important to have one main PPI contact or lead for consistency, and to build the relationships ( 45 ). This can be challenging in academic settings, where many researchers are on short-term contracts. Is PPI being taken seriously? It has been challenging as a group of pre-clinical science researchers who are trying to do meaningful, sustainable PPI. Despite the growing need and expectation of PPI it is often seen or perceived as something less important than doing the ‘real’ science research. Considerable staff time, planning and resources have been invested in establishing our PPIE strategy and building the group, as we recognise the need and true value of PPI. A continued challenge in the field will be to increase awareness of the importance of PPI. Could this happen at an institution level and/or are national funding panel members adequately trained to assess the robustness of PPI within funding bids? Looking forward Using the findings from our evaluation, we have produced a PPIE action plan for the next 18 months and beyond. Actions which align with each of the six National Standards for PPI have been developed using the data from the evaluation. These will be reviewed and evaluated 18 months from their start date. We have seen the direct benefits of going out into our local community, engaging with a broad range of people, and building trust. We will continue to build and develop our community links paying particular attention to ensuring we reach communities and groups that are less well served. This will address the local health inequalities related to hearing and brain health by increasing access to resources, information, and services. Through building trust and relationships, we aim to increase participation and involvement with research. An idea that has stemmed from our group meetings is that we should offer training to interested group members to enable them to be ‘community ambassadors’ so they are equipped to go out into the community to raise awareness. Community ambassadors may use their existing links and contacts to further widen their reach in the community. We will work alongside our group members to build upon the work we have started in the community which will widen participation and involved in our research and PPI and ultimately ensure that more voices are heard. Conclusions We have presented findings from the evaluation and discussed how valuable and how hard PPIE can be for both group members/participants and researchers. The value of PPI for our group members includes increased knowledge, feeling valued and listened to, sharing experiences with others, and supporting research. A challenge for group members is how hard it can be to be involved alongside other commitments such as caring responsibilities, the demands of employment and study, whether at school or beyond. We intend to address this through a focused effort to run online meetings at various times during the day/out of core work hours. The value of PPI for researchers in the group has included learning from people who have lived experience of hearing loss and what matters to them, developing new ideas for projects with group members and developing their professional and interpersonal skills. A challenge for researchers is maintaining a regular funding stream to sustain the group, as well as the time and expertise required to run an effective group. Increasing the visibility of our group and highlighting the need for support from local, and possibly national, researchers through funding bids are ways we are tackling this. Finally, ensuring PPI is both diverse and inclusive remain a challenge to all involved. These aspects require consistent commitment to improvement from researchers and PPI practitioners. We are working to achieve and maintain this by going to people in the places where they are and engaging with different communities, particularly those seldom heard voices to ensure they too can share their lived experience. Abbreviations BSL British Sign Language IRAS Integrated Research Application System NIHR National Institute of Health and Care Research PPEET Public and Patient Engagement Evaluation tool PPI Patient and public involvement PPIE Patient and public involvement and engagement UKRI UK Research and Innovation USAIS University of Southampton Auditory Implant Service Declarations Ethics approval and consent to participate. Ethical approval for the questionnaire was granted by the University of Southampton Ethics Committee, reference number ERGO/FEPS/ 81056. Consent for publication Not applicable. Availability of data and materials The dataset supporting the conclusions of this article is available in the University of Southampton PURE repository, https://doi.org/10.5258/SOTON/D2919. Competing interests The authors declare that they have no competing interests. Funding The development and funding for the group has come through various funders which include NIHR Research Design Service, EPSRC (EP/W018764/1) and University of Southampton Public and Community Development Fund 2022/2023 for the community engagement project. Authors' contributions The group was initiated by TN and HP and then developed by TN and KH, who together, devised the initial plan for the evaluation and development the first full draft of the manuscript. TN, HP, KH and WBJ were involved in the development of our PPIE strategy and WBJ, HP and MG continually support the group. SS, CS, IH, ST were all PPIE group members who volunteered to be part of the evaluation steering group. IH, ST subsequently left the group due to increased family commitments. SS and CS contributed to the design and planning of the evaluation and analysis/interpretation of the data. All authors reviewed and approved the final manuscript. Acknowledgements The authors are grateful to all members of ALL_EARS@UoS PPIE group who invest their time and energy in supporting, and being part of, our group. Thank you for being willing to share your own experience and knowledge with us and for being patient and supportive whilst we have been building our group and for trusting us as you share your lived experience of hearing loss. Authors' information (optional) KH is a post-doctoral research fellow in Faculty of Medicine and PPIE group lead for ALL_EARS. MG is a senior clinical scientist at University of Southampton Auditory Implant Service. WBJ is a patient and public involvement practitioner. HP is a PPIE (Patient and Public Involvement and Engagement) Lead and advocate. 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Colomer-Lahiguera S, Steimer M, Ellis U, Eicher M, Tompson M, Corbière T, et al. Patient and public involvement in cancer research: A scoping review. Cancer Med. 2023;12(14):15530–43. Mockford C, Staniszewska S, Griffiths F, Herron-Marx S. The impact of patient and public involvement on UK NHS health care: A systematic review. Vol. 24, International Journal for Quality in Health Care. 2012. p. 28–38. Pizzo E, Doyle C, Matthews R, Barlow J. Patient and public involvement: How much do we spend and what are the benefits? Health Expect. 2015;18(6):1918–26. Jackson T, Pinnock H, Liew SM, Horne E, Ehrlich E, Fulton O, et al. Patient and public involvement in research: From tokenistic box ticking to valued team members. BMC Medicine. Volume 18. BioMed Central Ltd.; 2020. Additional Declarations No competing interests reported. Supplementary Files Additionalfile1.docx Additional files Additional file 1. File name: Additional file 1 File format: .docx Title: GRIPP2 Long Form. Description of data: The GRIPP2 Long Form has been used to report on the patient and public involvement in this study and work. Additionalfile2.png Additional file 2 File name: Additional file 2 Format: PNG Title: Reflexive thematic analysis process (steps 1-3). Description of data: The free-text answer questions are in the middle (dark grey box). The initial themes associated with each question are shown (light grey boxes) and the initial codes are included around each initial theme. Braun and Clarke’s six phase process included (18–20), (1) Familiarising yourself with the dataset (2) Coding (3) Generating initial themes (4) Developing and reviewing themes (5) Refining, defining, and naming themes (6) Writing up (21). To familiarise ourselves with the dataset, there was an initial review of the data by reading then extracting the quotes or phases. These quotes were shared with the steering group for feedback. The extracted quotes were pasted into a spreadsheet one sentence for each row. Initial codes were produced from the individual responses and each response in a row of the spreadsheet was assigned to each of the codes. From these initial codes, initial themes (light grey boxes) were generated. The initial codes were sorted into the initial themes as show in this figure. Cite Share Download PDF Status: Published Journal Publication published 11 Apr, 2024 Read the published version in Research Involvement and Engagement → Version 1 posted Editorial decision: Revision requested 14 Feb, 2024 Reviews received at journal 08 Feb, 2024 Reviews received at journal 04 Feb, 2024 Reviewers agreed at journal 12 Jan, 2024 Reviewers invited by journal 12 Jan, 2024 Editor assigned by journal 12 Jan, 2024 Submission checks completed at journal 11 Jan, 2024 First submitted to journal 09 Jan, 2024 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-3848030","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":266439543,"identity":"0df1c965-4257-4074-9798-f775b1bea75d","order_by":0,"name":"Kate Hough","email":"","orcid":"","institution":"Clinical and Experimental Sciences, Faculty of Medicine, University of Southampton","correspondingAuthor":false,"prefix":"","firstName":"Kate","middleName":"","lastName":"Hough","suffix":""},{"id":266439544,"identity":"57153711-76ea-4503-913b-7036892c491d","order_by":1,"name":"Mary Grasmeder","email":"","orcid":"","institution":"Auditory Implant Service, University of Southampton","correspondingAuthor":false,"prefix":"","firstName":"Mary","middleName":"","lastName":"Grasmeder","suffix":""},{"id":266439545,"identity":"a315ca4f-8c8c-4576-89c8-f050c61f99bf","order_by":2,"name":"Heather Parsons","email":"","orcid":"","institution":"NIHR Research Design Service, University of Southampton","correspondingAuthor":false,"prefix":"","firstName":"Heather","middleName":"","lastName":"Parsons","suffix":""},{"id":266439546,"identity":"6d27a8cb-6107-4965-bfa0-414f1d971460","order_by":3,"name":"William B Jones","email":"","orcid":"","institution":"Wessex Public Involvement Network, University Hospital Southampton NHS Foundation Trust","correspondingAuthor":false,"prefix":"","firstName":"William","middleName":"B","lastName":"Jones","suffix":""},{"id":266439547,"identity":"97f13f10-27d5-4135-b328-381f86271a8e","order_by":4,"name":"Sarah Smith","email":"","orcid":"","institution":"ALL_EARS@UoS PPIE Group Member, University of 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11:14:15","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-3848030/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-3848030/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1186/s40900-024-00567-1","type":"published","date":"2024-04-11T15:01:50+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":49548240,"identity":"205243c5-c474-4690-8d93-673581213297","added_by":"auto","created_at":"2024-01-12 19:29:39","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":476404,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cem\u003eResponses from rating scale questions that address the National PPI Standards.\u003c/em\u003e\u003c/p\u003e","description":"","filename":"Figure1.png","url":"https://assets-eu.researchsquare.com/files/rs-3848030/v1/670892adc183dcbdc7026e3a.png"},{"id":49548239,"identity":"1d90db86-209e-4e6f-83bf-e75ff397021d","added_by":"auto","created_at":"2024-01-12 19:29:39","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":496047,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cem\u003eResponses from rating scale questions that address the National PPI Standards\u003c/em\u003e.\u003c/p\u003e","description":"","filename":"Figure2.png","url":"https://assets-eu.researchsquare.com/files/rs-3848030/v1/e501786694a903cf92bda919.png"},{"id":49548241,"identity":"5a2462d3-3a46-4002-87c5-d0c48633ccf2","added_by":"auto","created_at":"2024-01-12 19:29:40","extension":"png","order_by":3,"title":"Figure 3","display":"","copyAsset":false,"role":"figure","size":333019,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cem\u003ePhase 4 of reflexive thematic analysis – Refining themes.\u003c/em\u003e\u003c/p\u003e","description":"","filename":"Figure3.png","url":"https://assets-eu.researchsquare.com/files/rs-3848030/v1/652c1d69c03849b10f77451c.png"},{"id":54713099,"identity":"05b835ae-3fd4-4b95-a730-090c314959d9","added_by":"auto","created_at":"2024-04-15 15:14:46","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1374953,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-3848030/v1/1eae450d-6e5c-424c-babc-2b2914f5b746.pdf"},{"id":49548238,"identity":"677811ec-fce5-4eea-95ce-00486fdc53fa","added_by":"auto","created_at":"2024-01-12 19:29:39","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":17566,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cu\u003e\u003cstrong\u003eAdditional files\u003c/strong\u003e\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAdditional file 1.\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFile name: \u003c/strong\u003eAdditional file 1\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFile format:\u003c/strong\u003e .docx\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTitle: \u003c/strong\u003e\u003cem\u003eGRIPP2 Long Form.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eDescription of data: \u003c/strong\u003eThe GRIPP2 Long Form has been used to report on the patient and public involvement in this study and work.\u003c/p\u003e","description":"","filename":"Additionalfile1.docx","url":"https://assets-eu.researchsquare.com/files/rs-3848030/v1/0bc57c6d38ffaae7280894f5.docx"},{"id":49548242,"identity":"36d142b2-a252-41fe-82c1-80c0a6625b05","added_by":"auto","created_at":"2024-01-12 19:29:40","extension":"png","order_by":2,"title":"","display":"","copyAsset":false,"role":"supplement","size":621349,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eAdditional file 2\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFile name: \u003c/strong\u003eAdditional file 2\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFormat: \u003c/strong\u003ePNG\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTitle:\u003c/strong\u003e Reflexive thematic analysis process (steps 1-3).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eDescription of data: \u003c/strong\u003eThe free-text answer questions are in the middle (dark grey box). The initial themes associated with each question are shown (light grey boxes) and the initial codes are included around each initial theme. Braun and Clarke’s six phase process included (18–20), (1) Familiarising yourself with the dataset (2) Coding (3) Generating initial themes (4) Developing and reviewing themes (5) Refining, defining, and naming themes (6) Writing up (21). To familiarise ourselves with the dataset, there was an initial review of the data by reading then extracting the quotes or phases. These quotes were shared with the steering group for feedback. The extracted quotes were pasted into a spreadsheet one sentence for each row. Initial codes were produced from the individual responses and each response in a row of the spreadsheet was assigned to each of the codes. From these initial codes, initial themes (light grey boxes) were generated. The initial codes were sorted into the initial themes as show in this figure.\u003c/p\u003e","description":"","filename":"Additionalfile2.png","url":"https://assets-eu.researchsquare.com/files/rs-3848030/v1/b4d5a0d975ffb9e4df88eb0b.png"}],"financialInterests":"No competing interests reported.","formattedTitle":"Patient and public involvement and engagement (PPIE): how valuable and how hard? An evaluation of ALL_EARS@UoS PPIE group, 18 months on","fulltext":[{"header":"Plain English summary ","content":"\u003cp\u003ePatient and public involvement and engagement (PPIE) integrates patients and members of the public into the conversations and decisions about the research needed by communities and how it should be done. We have established a PPIE group, ALL_EARS@UoS, for people with lived experience of hearing loss. This is so we can work together and learn from our group members\u0026rsquo; experience to inform our research into the understanding and management of hearing loss. We have worked with members to decide the aims, objectives, and ethos of the group. After the group\u0026rsquo;s first year, we felt it was important to reflect and evaluate the value of the group and the challenges facing members and researchers. We recruited members of the group to work with us to design an evaluative questionnaire. This article describes the findings from the questionnaire alongside an honest account of the value and challenges of PPIE. Our members described many benefits of being involved, ranging from supporting research to being able to share their experience with others in a similar position. A challenge for members is the difficulty in being involved alongside other commitments. A challenge for researchers is the funding and time needed to maintain the group, as well as ensuring the group is diverse in social background as well as experience, and that we are meeting the needs of our members. We report on the ways we intend to address these challenges so we can sustain the group and continue to work together in partnership.\u0026nbsp;\u003c/p\u003e"},{"header":"Background","content":"\u003cp\u003ePatient and public involvement (PPI) refers to research being carried out \u0026lsquo;with\u0026rsquo; or \u0026lsquo;by\u0026rsquo; members of the public rather than \u0026lsquo;to\u0026rsquo;, \u0026lsquo;about\u0026rsquo; or \u0026lsquo;for\u0026rsquo; them (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). The fundamental principle, which led to public involvement in research, is that people who are affected by the outcomes or process of research have the right to have a say in what, and how, research is undertaken (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). There is a growing emphasis on involving the public and patients across all stages of the research process. The benefits of PPI across health and social care research are being documented and recognised. Leading UK research funding bodies such as National Institute of Health and Care Research (NIHR) and UK Research and Innovation (UKRI), the body with oversight of a research budget of \u0026pound;8\u0026nbsp;billion, have indicated the importance and expectation of the active involvement of the public and patients in all stages of the research that they fund. Patient and public engagement is slightly different from PPI, with a focus on ensuring information and knowledge about research is disseminated to patients and the public through mechanisms such as events, exhibits and talks. It is designed to ensure that lived experience influences the design and delivery of research that is of benefit to people. Throughout this paper, we refer to our activity as PPIE to encompass patient and public involvement \u003cem\u003eand\u003c/em\u003e engagement. Within the paper, other sources may use the term PPI or PPIE and so when referring to a specific aspect of our work, we will describe it in full as engagement or involvement.\u003c/p\u003e \u003cp\u003eApproaches to patient and public involvement include consultation, collaboration, co-production, and patient led/user-controlled research. These involve differing levels of commitment and responsibility. Consultation asks members of a group for their views and uses these to inform decision making. Examples of consultation include discussing research project ideas with patients and the public to find out how relevant they think the projects are, and asking patient and carers to read, and provide feedback on, documents in the research design pathway. Collaboration/co-production is an ongoing partnership between researchers and members of public, where decisions about the research are shared (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). It is a sharing of power between patients, the public, clinicians, researchers, service providers and policy makers. Examples include PPI members collaborating with researchers to develop a grant application or being involved with interviews with research participants for qualitative data collection. Patient-led research is research that is controlled, directed, and managed by service users and their service user organisations (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e highlights the differences between involvement, engagement, and participation in research.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003e\u003cem\u003eTypes of patient and public involvement and engagement and participation in research.\u003c/em\u003e\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003eInvolvement:\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eConsultation\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAsking members for their views and using these views to inform decision making.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCollaboration/ co-production\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eWhere decisions about the research are shared between researchers and members of the public.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePatient-led\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eWhere research is controlled, directed, and managed by service users and their service user organisations.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEngagement\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eWhere information and knowledge about research is provided and disseminated through a range of activities.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eParticipation\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eWhere members of the public take part in the research study.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eThe benefits of incorporating PPIE in health research are many and can be valuable for members of the public, patients, researchers, community groups and clinicians (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). There is recognition that involvement can improve the quality and relevance of research to patients and the public (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). Ethical and democratic benefits include the right of the public to have a voice in how public money is being spent and what research the money is funding. When effective this results in greater transparency and accountability to funders and the public. Patient and public contribution to research proposal development and study design can increase the chance of funding due to the early input from contributors, increasing the clarity, credibility, and relevance of the study. An ethical argument in favour of PPI is that the individual has the right to be fully involved with any health care or research intervention being done \u0026lsquo;to\u0026rsquo; them as a person (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e).\u003c/p\u003e \u003cp\u003ePublic involvement in health research in the UK needs to become more diverse and inclusive. For public involvement to be effective in improving research quality and relevance, and therefore improve health outcomes, the patient and public members/contributors must reflect the diversity of our communities. Recruitment of a diverse and inclusive group of people is a recognised challenge for PPI (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e). Data from the NIHR public contributors\u0026rsquo; feedback survey carried out between December 2018 and January 2019, highlighted that the NIHR public involvement community mainly consisted of older white people (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). Young people and minority ethnic communities were typically under-represented. Younger people made up only 2% (under 25) and 14% (age 26\u0026ndash;49) of surveyed public contributors. Only 2% of surveyed public contributors came from Asian ethnic groups and only 3% represented black ethnic groups (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). The term \u003cem\u003e\u0026lsquo;under-served communities\u0026rsquo;\u003c/em\u003e refers to the people who the research community need to do more with to provide a better service for. Under-served communities often face barriers in accessing healthcare information and services, as well as accessing, and getting involved, in research. To involve people from a wide range of backgrounds including underserved communities, researchers must make a conscious effort to go out to people, in their own communities, to raise awareness of their research and to invite people to take part.\u003c/p\u003e \u003cp\u003eSetting out to work with people with hearing loss/ profound hearing loss adds challenges if meetings are to be inclusive. This very challenge to make them inclusive highlights the barriers that people with hearing loss are likely to encounter when their communication requirements are not considered. Meetings need to be designed to support participation through being accessible for all members, irrespective of their hearing status, to engage and contribute. There is diversity within deafness. The needs and communication methods vary between people who are deaf, Deaf, and hard of hearing. Several communication methods and tools are used by d/Deaf and hard of hearing people including lip-reading, British Sign Language (BSL), Sign Supported English and the use of assistive technologies such as hearing aids and cochlear implants. D/deafness can co-exist with other sensory disabilities, including poor or little sight. Adjustments need to support participation in meetings and other activities. Language service professionals including sign language interpreters, captioning/note takers and the use of deafblind manual can help bridge what is otherwise a communication gap.\u003c/p\u003e \u003cp\u003eOur goal is to create an active and enduring PPIE group, whereby a partnership is created between researchers and patients and people with hearing loss, parents, and carers which empowers the members of the group to contribute to, and influence, the research being carried out to benefit people with hearing loss and their families. We aspire to establish and sustain a group where there is mutual reward, respect, and benefit for all members of the group. The main drivers of this work are to increase public awareness of hearing loss and hearing healthcare; the use and value of assistive technologies such as cochlear implants; access to cochlear implants and to improve hearing outcomes for people with hearing loss and/or a cochlear implant.\u003c/p\u003e \u003cp\u003eWe approached the NIHR Research Design Service in November 2021 to determine whether funding existed to establish a hearing loss PPIE group. This led to support from PPI officers within NIHR to enable us to start to develop our PPIE strategy. We recognised there was not generic funding available at that time, which highlighted the importance of including appropriately costed applications for research bids that would benefit from a well-developed hearing loss PPIE group. Funding at the early stages of PPIE is essential to facilitate the time commitment to develop and grow relationships, to manage the administration of a successful group and to reach out into the community. The notion of a group was first advertised to patients at the University of Southampton Auditory Implant Service (USAIS) in March 2022 through twitter, the USAIS website, and flyers in the clinic reception area. Our first meeting, with 8 group members, was held in May 2022. Between May and December several more meetings were held, with a steady increase in number of members in the group. By December 2022, it was clear that there was value to the group members and that we needed to expand and broaden the membership. We advertised through local support groups, social media and at local community groups in a small, funded community-engagement project. Meetings in January, May and July 2023 saw 12\u0026ndash;14 members participating. By July, 10 of the group members were people who had joined after discovering the group through our community engagement and outreach activities.\u003c/p\u003e \u003cp\u003eAs the group developed and evolved, we worked with members of the group to co-design and establish the elements of the group. These included the group name [ALL_EARS@UoS], the logo, ethos, aims and objectives all of which was written up and agreed in a terms of reference document. Our aims are to work with the group members to identify and prioritise the most relevant research and to involve members at all stages of the research process. To support this, we have held a training and information session about the complexities of the research process and highlighted all the points where members could get involved through this process. By taking the time to learn about our group member\u0026rsquo;s experiences we are starting to be able to identify the issues that are most important for people living with hearing loss. We want to turn these issues into research questions then turn these into research projects.\u003c/p\u003e \u003cp\u003eWe aim to sustain the group by ensuring that researchers and health care professionals are aware of the group, and that they approach us early in their research planning. We have established a framework to describe how researchers can work with members of our group including how researchers can share ideas and receive feedback from members of the group about project ideas. We ask that researchers build appropriate levels of costings for PPI into research applications, consider giving some of their time to support PPI and to think about how they can support the group to be recognised more widely.\u003c/p\u003e \u003cdiv id=\"Sec2\" class=\"Section2\"\u003e \u003ch2\u003eAims\u003c/h2\u003e \u003cp\u003eWe aimed to evaluate the impact, effectiveness, and engagement of the PPIE group ALL_EARS@UoS using an anonymous questionnaire. The data was used to produce a PPIE action plan. Members of ALL_EARS were invited to be part of the evaluation steering group and be involved at all stages of the evaluative research process. The questionnaire was designed with the collaboration of the entire steering group using the NIHR National Standards for Patient and Public Involvement (PPI) as a framework.\u003c/p\u003e \u003cp\u003eEveryone who was a member of ALL_EARS at the time of the survey in May 2023 was invited to complete an online, anonymous questionnaire. Our objective was to gather data to report on the development, progression, and effectiveness of ALL_EARS PPIE group in peer reviewed and grey publications.\u003c/p\u003e \u003c/div\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eEstablishing the PPIE group\u003c/h2\u003e \u003cp\u003eThe people who have joined ALL_EARS@UoS have lived experience of hearing loss and/or cochlear implants. This could mean personal experience of deafness/hearing loss or of wearing a cochlear implant/s. Equally it could mean a partner, family member, parent, or carer of someone with deafness/hearing loss or someone who has a cochlear implant/s. There is diversity in the severity of hearing loss/deafness between group members, this is exemplified by some people wear a hearing aid/s, some have a cochlear implant/s, some wear both a hearing aid and cochlear implant and some people wear neither but may have a hearing dog.\u003c/p\u003e \u003cp\u003ePPI was used in the development of the group, where the group\u0026rsquo;s aims, objective, ethos, and roles/responsibilities were established and agreed upon with the group, as the group grew and developed. Currently, the nature of involvement with our group is a combination of consultation and collaboration. Our goal is to reach an optimal level of involvement which is co-production of research.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eEvaluation of the PPIE group\u003c/h2\u003e \u003cdiv id=\"Sec6\" class=\"Section3\"\u003e \u003ch2\u003ePlanning and questionnaire design\u003c/h2\u003e \u003cp\u003eFor the formal evaluation of the group, ALL_EARS members were invited to join the evaluation steering group. Four group members agreed to join (two members subsequently left the group at data analysis stage due to increased family commitments).\u003c/p\u003e \u003cp\u003eSteering group members were involved in the design and development stages of the evaluation by suggesting questions to include and topics to cover and through multiple iterations of the draft questionnaire. Using the feedback, alongside the NIHR standards for PPI (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e), a full draft of the questionnaire was produced and circulated to the steering group.\u003c/p\u003e \u003cp\u003eThere are six distinct standards identified in the NIHR national standards for PPI. These include communication, governance, impact, working together, support and learning, and inclusive opportunities (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e), as outlined in Table \u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e. These standards provide a benchmark for researchers to work towards to ensure effective patient and public involvement. The standards were produced collaboratively by researchers, funders, public partners, and involvement practitioners from organisations from Scotland, Northern Ireland, Wales, and England (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e) The National Standards for Public Involvement have been used to design and structure a process for reflection on, and evaluation of, PPI (\u003cspan additionalcitationids=\"CR12\" citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e) To evaluate our progress against the standards, we used a series of statements which aligned to the standards to generate the questionnaire. For example, for Communication \u0026ndash; the following statements included:\u003c/p\u003e \u003cp\u003e \u003cul\u003e \u003cli\u003e \u003cp\u003e \u003cem\u003eThere are clear and informative communications about upcoming meetings, written work, and activities.\u003c/em\u003e \u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003e \u003cem\u003eThere are regular opportunities to offer feedback about meetings, project ideas and activities.\u003c/em\u003e \u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003e \u003cem\u003eMy feedback is gathered, acted on and shared back to the group.\u003c/em\u003e \u003c/p\u003e \u003c/li\u003e \u003c/ul\u003e \u003c/p\u003e \u003cp\u003eThe group members were asked to use a rating scale to identify how much they agreed with the statements from Strongly agree, agree, neither agree nor disagrees, disagree, and strongly disagree.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003e\u003cem\u003eNIHR National Standards of Patient and Public Involvement (PPI)\u003c/em\u003e (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e).\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003eNIHR National Standards for Patient and Public Involvement\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCommunications\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eUse plain language for well-timed and relevant communications, as part of involvement plans and activities.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGovernance\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eInvolve the public in research management, regulation, leadership, and decision making.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eImpact\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSeek improvement by identifying and sharing the difference that public involvement makes to research.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eWorking together\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eWork together in a way that values all contributors and build and sustains mutually respectful and productive relationships.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSupport and learning\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eOffer and promote support and learning opportunities that build confidence and skills for public involvement in research.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eInclusive opportunities\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eOffer public involvement opportunities that are accessible and that reach people and groups according to research needs.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003eEthics\u003c/h2\u003e \u003cp\u003e \u003cstrong\u003eEthical approval\u003c/strong\u003e \u003cp\u003e for the questionnaire was granted by the University of Southampton Ethics Committee, reference number ERGO/FEPS/ 81056.\u003c/p\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eConsent\u003c/h2\u003e \u003cp\u003eBefore completing the questionnaire, participants were asked consent to taking part in the questionnaire. Participants were also asked to consent to the anonymous data being collected and used for the evaluation of group and to be shared through publications, social media and with other clinical centres.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec9\" class=\"Section2\"\u003e \u003ch2\u003eQuestionnaire administration\u003c/h2\u003e \u003cp\u003eThe anonymous finalised questionnaire included a combination of questions that asked participants to; produce a rating; complete free-text answers and demographic self-identification using a check box list. The questionnaire was produced using Microsoft Forms. Members of the PPIE group were invited to complete the questionnaire online within two weeks of it being made available.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003eQuestionnaire analysis\u003c/h2\u003e \u003cp\u003eOnce the questionnaire was closed to new responses, a researcher in the team completed an initial analysis of the data to draw it together before sharing with the group. Two thirds of the members of the steering group generated commentary on the data, this included interpretation the free-text responses in each section of the questionnaire. Descriptive statistics including counts and percentages were used to describe the data from the rating scale questions. Free-text answers were analysed using reflexive thematic analysis. The themes were discussed with the group.\u003c/p\u003e \u003cp\u003eThe findings of the work have been formatted to align with the GRIPP2 Long Form (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e), this has been used to structure the content of this paper [see additional file 1].\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003ePositive outcomes of the PPIE group\u003c/h2\u003e \u003cdiv id=\"Sec13\" class=\"Section3\"\u003e \u003ch2\u003eCo-development of the group\u003c/h2\u003e \u003cp\u003eAfter the group was first advertised, we had an initial, small group of interested members who attended our first meeting in May 2022. We worked with the group and subsequent new members over the following months, to co-develop and build the group. Group facilitation supported the discussion and establishment of the aims and objectives of the group at a meeting in September 2022. Through group working we co-edited a paragraph written by a member of the group which outlined the group and the group\u0026rsquo;s aspirations. This text is displayed on the front page of the group website (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e). Several group members responded to a request to suggest names for the group. These were collected and an anonymous poll was used to enable all members of the group to vote to select the preferred the name. A similar process was used to generate a logo for the group. Drawings produced by group members were turned into electronic graphic images and a poll run to identify the most popular image.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003eGroup members/attendance\u003c/h2\u003e \u003cp\u003eBetween May 2022 and September 2023, we held eight in-person meetings. Typically, 12\u0026ndash;14 members attend each meeting. Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e highlights attendance for each meeting alongside recruitment information for those attending. Name and number of attendees for each meeting is recorded, no identifiers are used in any of the reports.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003e\u003cem\u003eBreakdown of number of attendees for each meeting held.\u003c/em\u003e\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"7\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c7\" colnum=\"7\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNumber of meetings\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDate of meeting\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eTotal attendance\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colspan=\"4\" nameend=\"c7\" namest=\"c4\"\u003e \u003cp\u003eBreakdown of attendees\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eNew members\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003ePatients at USAIS\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c6\"\u003e \u003cp\u003eRecruited through adverts (not patients)\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c7\"\u003e \u003cp\u003eRecruited from local community\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e03/05/2022\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e8\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c6\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c7\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e22/06/2022\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c6\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c7\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e23/09/2022\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c6\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c7\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e23/11/2022\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c6\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c7\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e06/01/2023\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c6\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c7\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e10/05/2023\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e10\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c6\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c7\"\u003e \u003cp\u003e10\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e11/07/2023\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c6\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c7\"\u003e \u003cp\u003e9\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e8\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e18/09/2023\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c6\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c7\"\u003e \u003cp\u003e9\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eData highlighting the number of meetings held, the number of members in attendance and information regarding where the members were recruited from (e.g. patients or through community engagement).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003eSupporting research\u003c/h2\u003e \u003cp\u003eWe have had valuable contributions to several research projects where members of the group have been involved in the design and implementation stages of the projects. This involved the discussion and development of project ideas and plans and reviewing protocols and patient facing documents. One group member contributed to the panel meeting for external ethical approval (Integrated Research Application System [IRAS]). We have had PPI involvement in various research grant applications. This has involved discussing and sharing the initial ideas and rationale for proposed pieces of work, opportunities to review applications and involvement in a video submission for an external funding application. Members of the group have provided a letter of support for grant applications. Through learning about different group member\u0026rsquo;s experiences of getting their cochlear implant and the challenges some faced, a new project idea emerged whereby we set out to evaluate the barriers and facilitators to cochlear implantation in a population of patients from USAIS who are over 60. The findings from this study have been presented at a national hearing meeting and are now being written up for publication in a peer-reviewed journal.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003ePublic engagement\u003c/h2\u003e \u003cp\u003eMembers of ALL_EARS@UoS have been involved with a diverse range of public engagement activities and events. In July 2022, a member of the group and a researcher gave a joint presentation reflecting on the process of the developing the group at an event called Working together: A training workshop on participatory and co-produced research. We have jointly staffed an exhibit about hearing and cochlear implants at University of Southampton Science and Engineering Festival in March 2023 and seven members of the group volunteered their time to run the exhibit alongside a researcher and raise awareness of hearing loss to members of the public of all ages. We took the same exhibit to the New Forest and Hampshire County show in July 2023, where three members of the group ran the exhibit alongside the researchers.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003eOutcomes from the evaluation\u003c/h2\u003e \u003cp\u003eThe response rate for the survey was 61% (11/18) of the PPIE group members. Demographic data including age, gender, and ethnicity, was captured to determine how the population of our group relates to the population of patients at USAIS and of the population within the catchment area for the service. Collecting this data early in the lifetime of the group enables us to consider whether and how we might improve diversity within the group.\u003c/p\u003e \u003cp\u003eAll respondents were \u0026gt;\u0026thinsp;30 years old, with the majority aged between 50\u0026ndash;79 (73%, (8/11)). 9% (1/11) of respondents were under the age of 50 and 18% (2/11) of respondents were over the age of 80. 64% of respondents were female and 36% were male. The ethnicity of most respondents (91%, (10/11)) was white (English, Welsh, Scottish, Northern Irish or British, Irish, Gypsy or Irish Traveller, Roma, any other White background). The ethnicity of 1 participant was Black (Black British, Caribbean, African, Any other Black, Black British, Caribbean, or African). 45% (5/11) of respondents described themselves as \u0026lsquo;Retired with several community commitments e.g. ALL_EARS, member of school or other community board\u0026rsquo;. 36% (4/11) of respondents described themselves as employed, two of whom work full-time and two part-time. 18% (2/11) respondents described themselves as \u0026lsquo;Retired with one community commitment e.g. ALL_EARs\u0026rsquo;. All respondents selected their primary/native language as English.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab4\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 4\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003e\u003cem\u003eAge, sex, and ethnicity data for respondents, USAIS patient population and the South of England.\u003c/em\u003e\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"5\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGroup\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eALL_EARS questionnaire respondents\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eUSAIS Patient Population \u003csup\u003ea\u003c/sup\u003e\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003eSouth of England \u003csup\u003eb\u003c/sup\u003e\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eAge\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eUnder 30\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e26%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e34.5%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e30\u0026ndash;50\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e9%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e23%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e26.2%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e51\u0026ndash;80\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e73%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e45%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e34%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eOver 80\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e18%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e5%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e5.3%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eSex\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e36%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e40%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e64%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e60%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eEthnicity\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eWhite\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e90%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e90%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e89%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eBlack\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e10%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\" morerows=\"2\" rowspan=\"3\"\u003e \u003cp\u003e5%\u003c/p\u003e \u003cp\u003e(5% no data for)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e1.9%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAsian\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e-\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e5.4%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMixed\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e-\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e2.5%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eOther\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e-\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e-\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e1.2%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"5\"\u003e\u003csup\u003ea\u003c/sup\u003e Data were extracted from a service evaluation which sourced from USAIS electronic patient records of all patients at USAIS who received a cochlear implant until 2020. (ERGO II: 76664)\u003c/td\u003e\u003c/tr\u003e \u003ctr\u003e\u003ctd colspan=\"5\"\u003e\u003csup\u003eb\u003c/sup\u003e Data were extracted from 2020 ONS Clinical Commissioning Group (CCG) population\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eestimates (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e) and using data collected from the UK census 2021 databases (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThe group demographic at the time of the survey was similar to that of the patient population under the care of USAIS. Table\u0026nbsp;\u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e4\u003c/span\u003e summarises the demographic data of questionnaire respondents compared to USAIS patient population and to the Sound of England. Around 90% of USAIS patients describe themselves as White (British) or White (any other white background). 5% of USAIS patients described themselves as either Asian, Black, or Mixed ethnicity (for around 5% of USAIS patients, their ethnicity is documented as unknown). Around 60% USAIS patients are female and 40% are male and 26% of patients at USAIS are under 30, 23% are aged 30\u0026ndash;50, 45% are aged 50\u0026ndash;80 and 5% are above 80 years old. While this reflects our group in that the largest proportion of people are aged between 50\u0026ndash;80 years old, it is clear that we need to increase our efforts to make the group relevant to people under the age of 30 as people in this group are also affected by hearing loss This need remains the case when we consider the age and ethnicity of the South of England, our primary clinical catchment area. Current data identifies that around 89% of people are White, 5.4% Asian, 1.9% Black, 2.5% Mixed and 1.2% Other. A similar assessment of the population by age shows 34.5% of people are under 30, 26.2% are aged 30\u0026ndash;50 years old, 34% of people are aged between 51\u0026ndash;80 and 5.3% of people are over the age of 80. We aspire to develop the demographic of our group to relate more widely to the South of England area regarding age and ethnicity.\u003c/p\u003e \u003cp\u003eFollowing a suggestion from a steering group member, we included a question to determine whether respondents had prior knowledge of deafness or the deaf community before developing hearing loss (or a family member/partner having hearing loss). 78% of respondents (8/11) responded no and 22% (3/11) responded yes.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003eEvidence from rating scale questions\u003c/h2\u003e \u003cp\u003eThere was a positive response to most rating questions, as summarised in Figs.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e and \u003cspan refid=\"Fig2\" class=\"InternalRef\"\u003e2\u003c/span\u003e, where for many of the responses either \u003cem\u003estrongly agreed\u003c/em\u003e or \u003cem\u003eagreed\u003c/em\u003e with the statements. Figure\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e displays the statements included for Communication, Governance and Impact and the percentage of respondents that selected each response. Figure\u0026nbsp;\u003cspan refid=\"Fig2\" class=\"InternalRef\"\u003e2\u003c/span\u003e displays the statements included for Working together, Support and learning and Inclusive opportunities and the percentage of respondents that selected each response. A few responses were neither agree nor disagree, suggesting ambivalence and that more work needs to be done to convince the group that we are achieving these standards.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eThe standards include communication, governance, and impact.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eThe standards include working together, support and learning and inclusive opportunities.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec19\" class=\"Section2\"\u003e \u003ch2\u003eEvidence open-text questions - Reflexive Thematic Analysis\u003c/h2\u003e \u003cp\u003eFour open-ended questions were included in the questionnaire: 1. What worked well? 2. What areas would you like to see improvements on? 3. What do you see as the impact of being involved within this group? 4. Describe any benefits of bring part of ALL_EARS@UoS. Reflexive thematic analysis was carried out on the free-text responses following Braun and Clarke\u0026rsquo;s six phase process (\u003cspan additionalcitationids=\"CR19\" citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e), (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) Familiarising yourself with the dataset (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) Coding (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) Generating initial themes (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e) Developing and reviewing themes (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e) Refining, defining, and naming themes (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e) Writing up (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e). This approach is flexible but robust and well established for the analysis qualitative data. The aim was to determine what areas are important for the members of the group. Inductive coding was used whereby there were no pre-determined codes. A set of codes were developed based on the review (reading and rereading) of the data. A schematic highlighting phases 1\u0026ndash;3 is included as additional file 2 in supplementary information. The initial themes (as shown in Fig.\u0026nbsp;\u003cspan refid=\"Fig3\" class=\"InternalRef\"\u003e3\u003c/span\u003e) were then developed and reviewed in phase 4 to give five refined (indicated in bold in Fig.\u0026nbsp;\u003cspan refid=\"Fig3\" class=\"InternalRef\"\u003e3\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eThe initial codes from each open-ended question were assigned to initial themes which are included in each grey box above. These initial themes were developed and reviewed during phase 4 and then refined and assigned into five refined themes (highlighted in the white boxes with bold text) during phase 5.\u003c/p\u003e \u003cp\u003eFive themes emerged from the dataset (Table \u003cspan refid=\"Tab5\" class=\"InternalRef\"\u003e5\u003c/span\u003e) which include: (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) Increased knowledge and awareness (around the topic of hearing health for group members and wider society), (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) supporting research, (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) positive impact on the individual, (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e) positive impact on others and (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e) running of the group/ group organisation. Several of these themes are comprised of subthemes.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab5\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 5\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003e\u003cem\u003eThemes and subthemes.\u003c/em\u003e\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTheme\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSubtheme\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1. Increased knowledge and awareness of hearing and cochlear implants\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1.1 \u003cem\u003e(Increased) knowledge to individual and society\u003c/em\u003e\u003c/p\u003e \u003cp\u003e1.2 \u003cem\u003eRaising awareness (of hearing loss and cochlear implants) for the individual and society\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e2. Supporting research\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e3. Positive impact on the individual\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e4. Positive impact of the group on others\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e5. Running of the group/ group organisation\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5.1 \u003cem\u003eAspects of the running of the group that are going well\u003c/em\u003e\u003c/p\u003e \u003cp\u003e5.2 \u003cem\u003eHow we could improve the organisation or running of the group\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec20\" class=\"Section2\"\u003e \u003ch2\u003eTheme 1: Increased knowledge and awareness of hearing and cochlear implants\u003c/h2\u003e \u003cp\u003eThis theme is about how group members felt the group, or their involvement in the group, has led to an increase in knowledge and awareness to themselves or wider society. This theme has two subthemes related to firstly knowledge and secondly raising awareness.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec21\" class=\"Section2\"\u003e \u003ch2\u003eSubtheme 1.1 (Increased) knowledge to individual and society\u003c/h2\u003e \u003cp\u003eGroup members commented on the opportunity to learn new things as being a positive outcome of the group such as an \u0026lsquo;increased (my) understanding of research and how it all works\u0026rsquo; as well as the opportunity learn from the group to then pass on the \u0026lsquo;important information for my community\u0026rsquo;, particularly around \u0026lsquo;what help is offered\u0026rsquo;.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eI learn new things about cochlear implants and hearing loss whilst helping to raise awareness.\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003e\u0026lsquo;It has been helpful to find out more for my chats to others with hearing loss as part of the bigger picture\u0026rsquo;.\u003c/p\u003e \u003cp\u003eSome group members discussed the need for further learning/education in \u0026lsquo;understanding the practical difficulties of being hard of hearing and elderly\u0026rsquo; and in \u0026lsquo;explaining signal processing aspects of deafness\u0026rsquo;.\u003c/p\u003e \u003cp\u003e \u003cb\u003eSubtheme 1.2 - Raising awareness (of hearing loss and cochlear implants) for the individual and society\u003c/b\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003eThis subtheme has two main elements; the need for increased awareness (which the group aims to address) and the positive impact of the group in increasing awareness of hearing loss and cochlear implants.\u003c/em\u003e \u003c/p\u003e \u003cp\u003eMany responses emphasised the need for increased awareness around hearing loss and the impact on the individual, as well as a need for much better awareness of cochlear implants. This appears to be a driving force for the involvement of many members of the group. A key reason why we need to raise awareness was to give people a better understanding of the challenges and impact people with hearing problems experience \u0026lsquo;to help people understand the problems that are faced by the deaf community\u0026rsquo;.\u003c/p\u003e \u003cp\u003e\u0026lsquo;Raising awareness of hearing loss so people have a better understanding of it and take into consideration how it can affect people\u0026rsquo;.\u003c/p\u003e \u003cp\u003eBetter awareness and knowledge of cochlear implants will be key in increasing access to cochlear implants, which is a shared driver of our group. One respondent discussed the importance of \u0026lsquo;reaching out to deaf people and parents of deaf children who know little or nothing of cochlear implants and their availability\u0026rsquo;.\u003c/p\u003e \u003cp\u003eMany responses highlighted the positive impact of the group in raising awareness of hearing and cochlear implants for themselves and in wider society.\u003c/p\u003e \u003cp\u003e\u0026lsquo;Raised my awareness of the barriers some people face in terms of getting a cochlear implant\u0026rsquo;.\u003c/p\u003e \u003cp\u003e\u0026lsquo;and also our work has raised awareness of hearing issues within wider society\u0026rsquo;.\u003c/p\u003e \u003cp\u003e\u0026lsquo;we raised awareness amongst a lot of people, spreading the word about implants particularly to older people through going out to groups\u0026rsquo;.\u003c/p\u003e \u003cp\u003eSome respondents looked forward to further impact of the group in continuing to raise awareness as the group develops and builds in the future.\u003c/p\u003e \u003cp\u003e\u0026lsquo;There is certainly scope for the group to have more impact on wider society as it develops in numbers and confidence\u0026rsquo;.\u003c/p\u003e \u003cp\u003e\u0026lsquo;I hope our impact will develop as we provide opportunities to further education on hearing loss (UoS Science Open Day and Winchester Science Centre)\u0026rsquo;.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec22\" class=\"Section2\"\u003e \u003ch2\u003eTheme 2 - Supporting research\u003c/h2\u003e \u003cp\u003eSeveral responses reflected the perceived benefit or positive impact of the group in \u0026lsquo;supporting research and development opportunities\u0026rsquo; which would then go on to benefit those with hearing loss or wider society.\u003c/p\u003e \u003cp\u003e\u0026lsquo;Difficult to know but I'd like to think that the work we've done collectively has helped in terms of creating research projects which in turn will have an impact on those with hearing loss\u0026rsquo;.\u003c/p\u003e \u003cp\u003e\u0026lsquo;The opportunity to contribute to research topics which will, in turn, benefit wider society\u0026rsquo;.\u003c/p\u003e \u003cp\u003eGroup members discussed the opportunities to contribute to research by \u0026lsquo;suggest(ing) changes to formal documents to better reflect the lived experience\u0026rsquo; as well as offering \u0026lsquo;the academic members suggestions for the thrust of their work\u0026rsquo;.\u003c/p\u003e \u003cp\u003eOne group member described it to be \u0026lsquo;stimulating to be visited by members of the research community e.g. Tracey and Helen and invited to comment on and add to their plans\u0026rsquo;.\u003c/p\u003e \u003cdiv id=\"Sec23\" class=\"Section3\"\u003e \u003ch2\u003eTheme 3 \u0026ndash; Positive impact on the individual\u003c/h2\u003e \u003cp\u003eSeveral group members highlighted the feeling of being valued and listened to, after years of potentially not feeling listened it (due to their deafness).\u003c/p\u003e \u003cp\u003e\u0026lsquo;I've been losing my hearing for 20\u0026thinsp;+\u0026thinsp;years and this is the first time anyone has asked me for my opinion. It genuinely feels like we're listened to, and our comments are valued and appreciated. It feels like the group is building momentum, and going forward has the capacity to have an impact and make a difference\u0026rsquo;.\u003c/p\u003e \u003cp\u003e\u0026lsquo;Encouragement to speak out and listen, using my implant to its full ability. The confidence to participate in discussions after many years of being mostly excluded from conversation\u0026rsquo;.\u003c/p\u003e \u003cp\u003eGroup member\u0026rsquo;s responses indicated a sense of good, welcoming feeling towards all members of the group and discussed a feeling of belonging. This aligns with NIHR standard \u0026lsquo;Working together\u0026rsquo; which emphasises working together in a way that values all contributors and builds and sustains mutually respectful and productive relationships.\u003c/p\u003e \u003cp\u003e\u0026lsquo;To be in a group of your peers with researchers who are very understanding and encouraging is very fulfilling\u0026rsquo;.\u003c/p\u003e \u003cp\u003e\u0026lsquo;All the preparation work, and keeping patient involvement in that, has given us all a sense of belonging and an aim of making the group a success\u0026rsquo;.\u003c/p\u003e \u003cp\u003eThere is a positive feeling within the group due to the \u0026lsquo;common goals\u0026rsquo; and collective good wishes.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eThe company and interactions of people with similar or complementary wishes for the deaf community.\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eIn addition, multiple responses highlighted the benefits of sharing experiences with a group of people, and \u0026lsquo;talking to other people about their journey of hearing loss and a cochlear implant\u0026rsquo; and the benefits \u0026lsquo;getting a wider diversity of people involved\u0026rsquo;. This also links to the inclusivity aspect of theme 5. One member commented on their \u0026lsquo;improved my confidence in terms of getting involved with things\u0026rsquo;.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec24\" class=\"Section2\"\u003e \u003ch2\u003eTheme 4 \u0026ndash; Positive impact of the group on others\u003c/h2\u003e \u003cp\u003eA number of responses highlighted the intent of the group in making a positive difference for people who may experience deafness in the future. One member felt they wanted to \u0026lsquo;be part of changing things for the future, and (feel) that the group provides that opportunity\u0026rsquo;.\u003c/p\u003e \u003cp\u003e\u0026lsquo;Make a difference in my community and encourage people to get involved\u0026rsquo;.\u003c/p\u003e \u003cp\u003e \u0026lsquo;I have had a lifetime of involvement with severely deaf people, throughout which I have seen well-intentioned but sub-optimal efforts to educate them and care for their welfare. I hope that and my technical skills can be used to improve their lot and help those who will become deaf in the future\u0026rsquo;.\u003c/p\u003e \u003cp\u003eOne member felt the group provided an \u0026lsquo;opportunity to shape the future of hearing services, medical studies and outcomes\u0026rsquo;.\u003c/p\u003e \u003cdiv id=\"Sec25\" class=\"Section3\"\u003e \u003ch2\u003eTheme 5 - Running of the group/ group organisation\u003c/h2\u003e \u003cp\u003eMany responses related to the organisation and structure of the group, where members of the group commented on either positive aspects of the organisation or suggestions of how the organisation and structure of the group could be improved. This theme splits into several subthemes which include:\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec26\" class=\"Section3\"\u003e \u003ch2\u003eSubtheme 5.1 Aspects of the running of the group that are going well\u003c/h2\u003e \u003cp\u003eFeedback suggests members of the group are satisfied with the \u0026lsquo;communication\u0026rsquo; and the structure and organisation of the group. Communication is one of the six standards for PPI which states the importance of plain language for well-timed and relevant communications, as part of involvement plans and activities. One response said, \u0026lsquo;The arranging of meetings and communications about what the targets for the meeting are done professionally\u0026rsquo;.\u003c/p\u003e \u003cp\u003e\u0026lsquo;The meeting I attended was very well structured\u0026rsquo;.\u003c/p\u003e \u003cp\u003e\u0026lsquo;The discussion groups have worked well where we go into small groups and then bring out ideas together at the end\u0026rsquo;.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec27\" class=\"Section3\"\u003e \u003ch2\u003eSubtheme 5.2 How we could improve the organisation or running of the group\u003c/h2\u003e \u003cp\u003eSome suggestions were for how we could improve the organisation or running of the group. The suggestions related to a range of areas including structure, inclusivity, and level of involvement. Suggestions for improving the structure referred to practicalities for how the meetings are scheduled and organised and how long the meetings are run.\u003c/p\u003e \u003cp\u003e\u0026lsquo;From my perspective, I'd like to have some meetings scheduled in the calendar for the coming year\u0026rsquo;.\u003c/p\u003e \u003cp\u003e\u0026lsquo;An extra half hour added to the meetings, so the agenda isn't so rushed at the end\u0026rsquo;.\u003c/p\u003e \u003cp\u003e\u0026lsquo;Possibility to create smaller subgroups to focus on specific things\u0026rsquo;.\u003c/p\u003e \u003cp\u003e As we are a group with many people with lived experience of hearing loss, ensuring all members of the group have equal access to the information and discussion during, and after, the meetings are always carefully considered. We only hold our meetings in a room with suitable lighting and space, with microphones connected to a loop system. We also provide live captioning in each meeting. Several comments around improving accessibility were related to the times and format of the meetings i.e., whether they are online or in person. To date, we have only held in-person meetings. However, one response highlighted the potential benefit of holding some online meetings which will be included in our action plan. \u0026lsquo;We talked at the beginning about meeting times and whether in person or video. I may be the only person who has missed a couple of meetings but would like to ensure I can be present, so I contribute effectively\u0026rsquo;. In addition, up until now, we have held meetings from 10am \u0026ndash; 12 noon, following a survey given to members during the early stages of the group which indicated a preference of mid-morning meetings. However, mid-morning meetings limit some groups of people from attending such as people who work full-time. A suggestion from a group member was that \u0026lsquo;The meetings could (to) be more accessible for people who work. This could also increase the number involved in the group\u0026rsquo;. These responses align with the NIHR standard \u0026lsquo;Inclusive Opportunities\u0026rsquo; which states that public involvement opportunities should be accessible and should reach people and groups according to research needs (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e) .\u003c/p\u003e \u003cp\u003eA further suggestion for ways we can improve how we organise the group included better, and more complete, feedback during and following involvement. \u0026lsquo;Where members have been or are being involved, it would be good for others to get feedback on how things are going and where things have changed as a result\u0026rsquo;. It is key in PPI to complete the feedback cycle, so group members/ public contributors know the impact of their involvement and to know their thoughts/opinions have been acknowledged and listened to. \u003cem\u003eOne response highlighted the importance for\u003c/em\u003e \u003cb\u003e\u0026lsquo;\u003c/b\u003e\u003cem\u003emore opportunities to collaborate and share outputs, data and insight from the work to educate and drive continuous improvement in this field\u0026rsquo;.\u003c/em\u003e\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec28\" class=\"Section2\"\u003e \u003ch2\u003eLevel of involvement\u003c/h2\u003e \u003cp\u003eA couple of responses suggest there may be an imbalance regarding expectations for what a group member\u0026rsquo;s level of involvement should be. One response suggests that group members should be prepared to get involved further with various tasks and meetings.\u003c/p\u003e \u003cp\u003e\u0026lsquo;Those who attend the group, in whatever way, being prepared to respond to requests to be involved in research e.g. through questionnaires, structured interviews etc. as well as discussion. I can quite understand that being involved in being a lay responder to research funding requests might well be too daunting for many\u0026rsquo;.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eIt would be helpful if more people were prepared to come to more meetings so people can develop confidence in working as a group. I quite understand it is early days for this at present.\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec29\" class=\"Section2\"\u003e \u003ch2\u003eGovernance\u003c/h2\u003e \u003cp\u003eAs we are still in the relatively early stages of this PPI group, we opted to include questions that we would like to ask in the future around Governance and asked respondents to share their thoughts on this area. The four questions were: (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) Public involvement plans are in place and these plans are regularly monitored, reviewed, and reported on. (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) Throughout the organisation, there is visible and accountable responsibility for public involvement. (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) Realistic resources such as money, staff, time are allocated for public involvement. (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e) The privacy of personal information is protected by collecting and using it in a suitable way. We received a selection of comments related to these statements, several of which acknowledged the effort and resources we have put into this work \u0026lsquo;Looking at the development of the membership of All Ears it is obvious that great efforts have been made to involve a broader range of people\u0026rsquo; and \u0026lsquo;At the All_Ears level, there is a great feeling that finance and resources are being put into genuine PPI\u0026rsquo;. Some comments suggest that was some uncertainty around \u0026lsquo;where All_Ears sits in relation to PPI in other branches of The University and the Southampton Hospital/Medical School. Thus I am uncertain where the thrust to promote the approach is coming from\u0026rsquo;. This suggests further discussion and transparency is required with our members about the structures in place to support the PPI.\u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis paper describes the evaluation of the impact, effectiveness, and engagement of the PPIE group, ALL_EARS@UoS using the NIHR National Standards for PPI as a framework. Overall, the strongest satisfaction was seen in responses to the statements related to communication and working together. Five themes emerged, these centred on increasing knowledge and awareness around hearing loss and cochlear implants, supporting research, the positive impact of the group on the individual as well as for wider society and how we organise the group. The responses suggest members value being part of the group and feel valued by researchers and other members of the group. Areas that require improvement and continual attention are increasing and improving diversity and inclusivity within the group.\u003c/p\u003e \u003cp\u003eWith the growing need and expectation for PPIE within research comes a growing need to evaluate, reflect, and report upon current practice to inform and enhance future practise. A recent qualitative systematic review and thematic synthesis that explored the experience of patient partners in public involvement identified seven themes (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e). These included \u0026ldquo;motivations to engage in research\u0026rdquo;, \u0026ldquo;activities in patient engagement\u0026rdquo;, \u0026ldquo;structure\u0026rdquo;, \u0026ldquo;competence\u0026rdquo;, \u0026ldquo;team dynamics\u0026rdquo;, \u0026ldquo;impacts on broader life\u0026rdquo;, and \u0026ldquo;illness\u0026rdquo;. Many of the motivations to engage in research such as the desire to help others, to contribute to better research and have their voices heard (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e) overlap with what we found. \u0026lsquo;Structure\u0026rsquo; and how the PPI is organised was another key area of importance which reflected both positive and negative patient experiences. This was also found in our evaluation. The importance of effective communication is a commonly discussed area in PPI evaluation (\u003cspan additionalcitationids=\"CR24\" citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThe frameworks, tools, and methods for evaluating patient and public involvement are growing rapidly. The international literature evaluating the impact of PPI has tripled in the last 10 years (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e). A scoping review of methods to measure and evaluate citizen engagement (i.e. partnering with members of the public) in health research identified a variety of methods including frameworks, discussion-based methods, survey-based and other methods (\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e). These methods commonly focused on gathering perceptions of those involved, often focused on empowerment, impact, respect, support, and value (\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e). A recent systematic review identified 65 different frameworks designed to map, evaluate, or report on PPIE (\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e). These frameworks fit into five main categories; power-focused, priority setting, study focused, report-focused, partnership focused.\u003c/p\u003e \u003cp\u003eWe used the National Standards for PPI to structure this evaluation (\u003cspan additionalcitationids=\"CR12\" citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). Our reasoning included that we could then use the same structure to form the basis of the action plan that would emerge from the evaluation. Additionally, we have used the evaluation as an opportunity/platform to inform group members of the National Standards for PPI to ensure we are being transparent about the expectations of effective PPI. We have always aimed to be upfront and honest with our group members about the aims and intention of our PPIE work including the standards we aim to align to. Further adoption of the national standards for PPI would facilitate the comparison of successes and challenges across regions, nationally and internationally. A limitation of our evaluation was that we did not have a version of the questionnaire for researchers/ PPI team to complete to evaluate the impact, effectiveness, and engagement of the group from researchers\u0026rsquo; perspective. Going forward, this will be essential to implement.\u003c/p\u003e \u003cp\u003eThe Public and Patient Engagement Evaluation tool (PPEET) is a selection of anonymous questionnaires developed collaboratively by researchers, patients, and members of the public (\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e, \u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e). There are three types: a participant questionnaire, a project questionnaire, and an organisation questionnaire. (Note. in Canada, patient, and public involvement is referred to as patient and family engagement). PPEET was developed as an evaluation tool that is user-friendly, generic and aspires to standardise evaluation. The international standardisation of this approach and the availability of both a pre-designed participant questionnaire and a project questionnaire for researchers and PPI professionals to complete are both strengths of this tool. We will consider this for future evaluation.\u003c/p\u003e \u003cdiv id=\"Sec31\" class=\"Section2\"\u003e \u003ch2\u003eHow valuable?\u003c/h2\u003e \u003cp\u003eThe value of fully incorporating PPIE into the work we do has been significant and wide reaching. We have had beneficial contributions to several research projects, where members have been involved in the design stages of projects and involved in reviewing project documents. This has improved the clarity, readability, and content of the documents. A limitation of our PPI is that for some projects, we were unable to involve group members in the ideas/planning stage due to time constraints and short windows for grant funding calls. We aim to involve members as early as possible where permitted.\u003c/p\u003e \u003cp\u003eFor members of the group, there has been great personal value and impact as highlighted in the qualitative data collected in the questionnaire. We have created a group where there is mutual trust and members feel valued and empowered to share their experiences as evidenced through group member\u0026rsquo;s involvement in public engagement events like at the University of Southampton Science and Engineering festival. Truly valuing group members unique knowledge and lived experience, and how this will contribute to the research, is essential (\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e). A variety of positive outcomes of being involved in research on the public have been described including new skills and knowledge, personal development, and new support/friendships (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e)\u003c/p\u003e \u003cp\u003ePPIE is valuable for researchers and research students in developing their effectiveness and expertise in research and science communication. It provides an opportunity to develop interpersonal skills and the skills required to organise and facilitate meetings and events. Importantly it allows researchers to learn about their research area/health condition from the perspective of people with lived experience (\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e) which enables the development of a deeper understanding, often otherwise largely theoretical, of a health condition. To gather the perspectives of researchers in our group, we will evaluate the value and the challenges using a similar questionnaire as described in this article.\u003c/p\u003e \u003cp\u003eThrough establishing ALL_EARS@UoS PPIE group, we have been able to bridge the gap between the university and community by working with members of our local community and learning from their knowledge and experience. This is a priority at University of Southampton as we are part of a Civic University Agreement (\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e) meaning we are committed to improving the lives of those living in our local area by engaging with them through different educational, enterprise, and cultural activities. Through going out into our local community, we have successfully recruited several people to join our group, increasing their opportunity to be heard and the cultural and ethnic diversity of the group. Co-designing and co-delivering exhibits at public engagement events with members of the group, has developed new ways for us to share knowledge about our research with members of our local community.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec32\" class=\"Section2\"\u003e \u003ch2\u003eHow hard?\u003c/h2\u003e \u003cp\u003eInvolving a diverse group of people who will represent different communities is essential for PPIE to be truly effective. Many groups in our society are considered underserved or \u0026lsquo;seldom heard\u0026rsquo; (\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e, \u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e). Common characteristics of people in underserved groups include lower inclusion and involvement in research compared to other groups, key differences in how the group accesses, engages with, and responds to, existing healthcare interventions compared to other groups and high healthcare burden that is not matched by the volume of research carried out for the group (\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e). Some examples include minority ethnic groups, socioeconomically disadvantaged groups, people in alternative residential circumstances (e.g. migrants, asylum seekers, the homeless and prisoners), people with a physical or learning disability and carers. Barriers to inclusion and involvement include physical disability, lack of trust and interest in trials and health research, cultural barriers, and specific health fears. It is our responsibility as researchers to work to break down the barriers.\u003c/p\u003e \u003cp\u003eThe demographic of our group at the time the evaluation was not very diverse (majority white and over the age of 50) and most group members were recruited through being a patient at USAIS. We were aware this was not representative of our local area as well as not a diverse group of people in terms of their experience of hearing loss. We have used community engagement as a method to break down physical barriers by going to people where they are in the community and by investing time to build trust. Through visiting local community groups and getting to know members of the community by getting involved with activities they already enjoy and participate in; we have been building trust and creating a more equal partnership which is key for effective involvement and engagement. A similar approach where there was a clear focus of how to build trust and relationships, how to conduct acceptable and inclusive activities and how to maintain reciprocal relationships was discussed by Jameson et al (\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e). At the time of writing, 40% (16/40) of our existing group members have been recruited through community engagement. Therefore, our group is a better representation of our local community. We now have members who have different types of hearing loss, who wear hearing aids or cochlear implants (or both or neither), as well as people who are interested and want to support their families and communities by being involved with hearing loss research. Further improvements are needed with regards to how diverse the group is within deafness. This was highlighted in the questionnaire \u0026lsquo;The group is a true representation of the Deaf or hard of hearing community\u0026rsquo; (Fig.\u0026nbsp;\u003cspan refid=\"Fig2\" class=\"InternalRef\"\u003e2\u003c/span\u003e). We currently don\u0026rsquo;t have any members from the Deaf community who communicate solely by sign language. Over time, when we re-evaluate the group, we anticipate a more diverse demographic and a higher number of responses, due to the gradual increase in group attendance.\u003c/p\u003e \u003cp\u003eDiversity and inclusivity should come hand in hand. Having diversity within PPI without inclusivity is poor. Inclusivity means a combination of acknowledging and valuing differences whilst also promoting equity. Inclusion is as an active verb; something we must \u003cem\u003edo\u003c/em\u003e to ensure people have equal access to the information, meetings, and group. A challenge we faced was creating an inclusive group and ensuring we met each member\u0026rsquo;s accessibility needs. Many group members have different levels of hearing loss and use a variety of hearing interventions and communication approaches. For communication between meetings, all members were asked to share their communication preferences when they joined the group such as via email, phone calls or text messaging or letters. In every meeting, we have a note taker present and live captions are projected onto a screen, which allow members to glance at the screen and follow what is being said. The rooms we use have multiple screens to allow for projection of live captions as well as any slides for the meeting. The rooms also have a hearing loop system which is connected to the microphones we use. When we have members attending who communicate using British Sign Language (BSL), we have a BSL interpreter present. A significant challenge is the cost to support these accessibility needs which are on top of the cost of involvement fees and travel expense that are offered to all participants at each meeting.\u003c/p\u003e \u003cp\u003eA regular funding source is necessary for sustainable, enduring, and inclusive PPIE. As well as accessibility costs, funding is required to pay for involvement fees and travel expenses (\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e), staff time (\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e), materials and refreshments. PPIE needs to be accurately costed into each research grant. A systematic review exploring the theories, barriers, and enablers of PPI across health, social care and patient safety identified financial compensation and resources as a key area to consider (\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e) There is an underreporting of the costs related to PPI and evidence of any economic analysis of the costs in the literature (\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e, \u003cspan additionalcitationids=\"CR42\" citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e). The importance and challenges of carrying out PPI cost evaluation has been discussed (\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e). Using established economic evaluation methods for PPI has limitations as outcomes for PPI cannot be expressed as quantifiable entities (\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e). In addition, we cannot solely focus on outcomes of PPI, as the process including the trust and relationships formed are equally as important. This is likely contributing to the apparent disconnect or lack of understanding of the true costs or budgets that are required for inclusive and enduring PPIE by both funding bodies and researchers.\u003c/p\u003e \u003cp\u003eThe time needed to establish and support an enduring PPIE group is another challenge. Building trust and relationships with group members, organising, and running regular meetings and maintaining communication all take time. It is important to have one main PPI contact or lead for consistency, and to build the relationships (\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e). This can be challenging in academic settings, where many researchers are on short-term contracts.\u003c/p\u003e \u003cp\u003eIs PPI being taken seriously?\u003c/p\u003e \u003cp\u003eIt has been challenging as a group of pre-clinical science researchers who are trying to do meaningful, sustainable PPI. Despite the growing need and expectation of PPI it is often seen or perceived as something less important than doing the \u0026lsquo;real\u0026rsquo; science research. Considerable staff time, planning and resources have been invested in establishing our PPIE strategy and building the group, as we recognise the need and true value of PPI. A continued challenge in the field will be to increase awareness of the importance of PPI. Could this happen at an institution level and/or are national funding panel members adequately trained to assess the robustness of PPI within funding bids?\u003c/p\u003e \u003cdiv id=\"Sec33\" class=\"Section3\"\u003e \u003ch2\u003eLooking forward\u003c/h2\u003e \u003cp\u003eUsing the findings from our evaluation, we have produced a PPIE action plan for the next 18 months and beyond. Actions which align with each of the six National Standards for PPI have been developed using the data from the evaluation. These will be reviewed and evaluated 18 months from their start date.\u003c/p\u003e \u003cp\u003eWe have seen the direct benefits of going out into our local community, engaging with a broad range of people, and building trust. We will continue to build and develop our community links paying particular attention to ensuring we reach communities and groups that are less well served. This will address the local health inequalities related to hearing and brain health by increasing access to resources, information, and services. Through building trust and relationships, we aim to increase participation and involvement with research. An idea that has stemmed from our group meetings is that we should offer training to interested group members to enable them to be \u0026lsquo;community ambassadors\u0026rsquo; so they are equipped to go out into the community to raise awareness. Community ambassadors may use their existing links and contacts to further widen their reach in the community. We will work alongside our group members to build upon the work we have started in the community which will widen participation and involved in our research and PPI and ultimately ensure that more voices are heard.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Conclusions","content":"\u003cp\u003eWe have presented findings from the evaluation and discussed how valuable and how hard PPIE can be for both group members/participants and researchers. The value of PPI for our group members includes increased knowledge, feeling valued and listened to, sharing experiences with others, and supporting research. A challenge for group members is how hard it can be to be involved alongside other commitments such as caring responsibilities, the demands of employment and study, whether at school or beyond. We intend to address this through a focused effort to run online meetings at various times during the day/out of core work hours. The value of PPI for researchers in the group has included learning from people who have lived experience of hearing loss and what matters to them, developing new ideas for projects with group members and developing their professional and interpersonal skills. A challenge for researchers is maintaining a regular funding stream to sustain the group, as well as the time and expertise required to run an effective group. Increasing the visibility of our group and highlighting the need for support from local, and possibly national, researchers through funding bids are ways we are tackling this. Finally, ensuring PPI is both diverse and inclusive remain a challenge to all involved. These aspects require consistent commitment to improvement from researchers and PPI practitioners. We are working to achieve and maintain this by going to people in the places where they are and engaging with different communities, particularly those seldom heard voices to ensure they too can share their lived experience.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eBSL\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;British Sign Language\u003c/p\u003e\n\u003cp\u003eIRAS \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u0026nbsp;Integrated Research Application System\u003c/p\u003e\n\u003cp\u003eNIHR\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u0026nbsp;National Institute of Health and Care Research\u003c/p\u003e\n\u003cp\u003ePPEET\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u0026nbsp;Public and Patient Engagement Evaluation tool\u003c/p\u003e\n\u003cp\u003ePPI\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u0026nbsp;Patient and public involvement\u003c/p\u003e\n\u003cp\u003ePPIE \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u0026nbsp;Patient and public involvement and engagement\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eUKRI \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;UK Research and Innovation\u003c/p\u003e\n\u003cp\u003eUSAIS \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;University of Southampton Auditory Implant Service\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate.\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eEthical approval for the questionnaire was granted by the University of Southampton Ethics Committee, reference number ERGO/FEPS/\u0026nbsp;81056.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe dataset supporting the conclusions of this article is available in the University of Southampton PURE repository, \u0026nbsp;https://doi.org/10.5258/SOTON/D2919.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe development and funding for the group has come through various funders which include NIHR Research Design Service, EPSRC (EP/W018764/1) and University of Southampton Public and Community Development Fund 2022/2023 for the community engagement project.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026apos; contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe group was initiated by TN and HP and then developed by TN and KH, who together, devised the initial plan for the evaluation and\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003edevelopment the first full draft of the manuscript. TN, HP, KH and WBJ were involved in the development of our PPIE strategy and WBJ, HP and MG continually support the group. SS, CS, IH, ST were all PPIE group members who volunteered to be part of the evaluation steering group. IH, ST subsequently left the group due to increased family commitments. SS and CS contributed to the design and planning of the evaluation and analysis/interpretation of the data. All authors reviewed and approved the final manuscript.\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors are grateful to all members of ALL_EARS@UoS PPIE group who invest their time and energy in supporting, and being part of, our group. Thank you for being willing to share your own experience and knowledge with us and for being patient and supportive whilst we have been building our group and for trusting us as you share your lived experience of hearing loss.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026apos; information (optional)\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eKH is a post-doctoral research fellow in Faculty of Medicine and PPIE group lead for ALL_EARS.\u003c/p\u003e\n\u003cp\u003eMG is a senior clinical scientist at University of Southampton Auditory Implant Service.\u003c/p\u003e\n\u003cp\u003eWBJ is a patient and public involvement practitioner.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eHP is a PPIE (Patient and Public Involvement and Engagement) Lead and advocate. SS, CS are members of ALL_EARS and people who use a cochlear implant. IH, ST were members of ALL_EARS, involved in the design stages of the evaluation.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eTN is a Professor in Neuroimmunology and Director of the Graduate School for Faculty of Medicine.\u0026nbsp;\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eNIHR. Briefing notes for researchers - public involvement in NHS, health and social care research [Internet]. 2021 [cited 2023 Mar 24]. 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Health Expect. 2015;18(6):1918\u0026ndash;26.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eJackson T, Pinnock H, Liew SM, Horne E, Ehrlich E, Fulton O, et al. Patient and public involvement in research: From tokenistic box ticking to valued team members. BMC Medicine. Volume 18. BioMed Central Ltd.; 2020.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"research-involvement-and-engagement","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"riae","sideBox":"Learn more about [Research Involvement and Engagement](http://researchinvolvement.biomedcentral.com/)","snPcode":"40900","submissionUrl":"https://submission.nature.com/new-submission/40900/3","title":"Research Involvement and Engagement","twitterHandle":"@MedicalEvidence","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Patient and public involvement, evaluation, hearing loss, audiology, community engagement, standards","lastPublishedDoi":"10.21203/rs.3.rs-3848030/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-3848030/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eALL_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.\u003c/p\u003e\n\u003cp\u003eA 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.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAn 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.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe 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.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe 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.\u003c/p\u003e","manuscriptTitle":"Patient and public involvement and engagement (PPIE): how valuable and how hard? An evaluation of ALL_EARS@UoS PPIE group, 18 months on","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-01-12 19:29:35","doi":"10.21203/rs.3.rs-3848030/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2024-02-14T21:14:21+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-02-08T13:03:44+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-02-05T04:27:38+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"61f4364e-efd9-4f22-9a36-c5497cf29eb3","date":"2024-01-12T10:30:01+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2024-01-12T10:14:13+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-01-12T10:12:17+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-01-11T08:31:23+00:00","index":"","fulltext":""},{"type":"submitted","content":"Research Involvement and Engagement","date":"2024-01-09T11:07:08+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"research-involvement-and-engagement","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"riae","sideBox":"Learn more about [Research Involvement and Engagement](http://researchinvolvement.biomedcentral.com/)","snPcode":"40900","submissionUrl":"https://submission.nature.com/new-submission/40900/3","title":"Research Involvement and Engagement","twitterHandle":"@MedicalEvidence","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"37ed6a95-4395-4ad3-bdfc-bcf2b6f9bb69","owner":[],"postedDate":"January 12th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2024-04-15T15:12:06+00:00","versionOfRecord":{"articleIdentity":"rs-3848030","link":"https://doi.org/10.1186/s40900-024-00567-1","journal":{"identity":"research-involvement-and-engagement","isVorOnly":false,"title":"Research Involvement and Engagement"},"publishedOn":"2024-04-11 15:01:50","publishedOnDateReadable":"April 11th, 2024"},"versionCreatedAt":"2024-01-12 19:29:35","video":"","vorDoi":"10.1186/s40900-024-00567-1","vorDoiUrl":"https://doi.org/10.1186/s40900-024-00567-1","workflowStages":[]},"version":"v1","identity":"rs-3848030","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-3848030","identity":"rs-3848030","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}