ALL_EARS@UoS is a patient and public involvement and engagement (PPIE) group for people with lived experience of hearing loss. The purpose of the group is to share experiences of hearing loss and hearing healthcare, inform research and improve services for patients at University of Southampton Auditory Implant Service. A year after inception, we wanted to critically reflect on the value and challenges of the group. Four members of ALL_EARS@UoS were recruited to an evaluation steering group. This paper reports the evaluation of the group using the UK Standards for Public Involvement. An anonymous, mixed-methods questionnaire was co-designed and shared with members of ALL_EARS@UoS using an online platform. The questionnaire was designed to capture satisfaction, individual feedback through free-text answers, and demographic information. Descriptive statistics have been used to express the satisfaction and demographic data. Reflexive thematic analysis has been used to analyse the free-text responses. Group engagement and activity data over time were monitored and collected. The questionnaire response rate was 61% (11/18). Areas identified as strengths were ‘Communication’ and ‘Working together’. Five themes were developed from the thematic analysis; (1) Increased knowledge and awareness around the topic of hearing health for group members and wider society, (2) supporting research, (3) inclusivity within the group, (4) opportunity to make a difference for people in the future and (5) running of the group/group organisation. The data highlighted the value and challenges of PPIE. Members described feeling listened to and appreciation of being able to share experiences. Time of day and meeting format were identified as challenges as they affected who could attend the meetings. The ability to secure and maintain sufficient funding and time to support inclusive and diverse PPIE activities is a challenge for researchers. We have identified how PPIE added value to both group members and researchers, emphasising the true benefit of PPIE. We have highlighted challenges we are facing and our plan to tackle these. We aim to continue to develop and sustain a group that reflects the diversity of the Deaf/deaf or hard of hearing community and of our local community. Patient and public involvement and engagement enables members of the public to influence what research happens. We have established a group called ALL_EARS@UoS for people with lived experience of hearing loss. This is so we can work together and learn from our group members’ experiences, to inform our research into hearing loss. The members of ALL_EARS have helped to decide the aims, objectives, and principles of the group. This paper is a report of the value and challenges of the first year of the group. We recruited members of the group to work with us to design a survey. This paper describes the findings from the survey. Our members described benefits, ranging from supporting research to being able to share their experience with others. A challenge for members is the difficulty in being involved alongside their other commitments. A challenge for researchers is the funding and time needed to maintain the group. Other challenges include ensuring the group is diverse and that we understand and meet the needs of our members. We report on how we will address these challenges, so we can continue to work in partnership as a group.

中文翻译：

---

患者和公众的参与（PPIE）：有多有价值，有多难？ ALL_EARS@UoS PPIE 组的评估，18 个月

ALL_EARS@UoS 是一个患者和公众参与 (PPIE) 团体，面向有听力损失经历的人们。该小组的目的是分享听力损失和听力保健的经验，为研究提供信息并改善南安普顿大学听觉植入服务中心为患者提供的服务。成立一年后，我们希望批判性地反思该集团的价值和挑战。 ALL_EARS@UoS 的四名成员被招募到评估指导小组。本文报告了使用英国公众参与标准对该小组的评估。使用在线平台与 ALL_EARS@UoS 的成员共同设计并共享匿名、混合方法的调查问卷。该调查问卷旨在获取满意度、通过自由文本答案提供的个人反馈以及人口统计信息。描述性统计数据已用于表达满意度和人口统计数据。反思性主题分析已用于分析自由文本响应。随着时间的推移，团体参与度和活动数据被监控和收集。问卷回复率为61%（11/18）。被确定为优势的领域是“沟通”和“合作”。根据主题分析制定了五个主题； (1) 增加团体成员和更广泛的社会对听力健康主题的了解和认识，(2) 支持研究，(3) 团体内部的包容性，(4) 为未来的人们做出改变的机会，以及 (5) ) 团体/团体组织的运作。这些数据突显了 PPIE 的价值和挑战。成员们描述了自己被倾听的感觉以及能够分享经验的感激之情。一天中的时间和会议形式被认为是挑战，因为它们影响了谁可以参加会议。能否获得并维持足够的资金和时间来支持包容性和多样化的 PPIE 活动对研究人员来说是一个挑战。我们已经确定了 PPIE 如何为小组成员和研究人员增加价值，强调 PPIE 的真正好处。我们强调了我们面临的挑战以及解决这些挑战的计划。我们的目标是继续发展和维持一个反映聋人/聋人或听力障碍社区以及当地社区多样性的团体。患者和公众的参与和参与使公众能够影响研究的进行。我们为有听力损失经历的人们建立了一个名为 ALL_EARS@UoS 的小组。这样我们就可以共同努力，从小组成员的经验中学习，为我们对听力损失的研究提供信息。 ALL_EARS 的成员帮助决定了该团体的目的、目标和原则。本文是集团第一年的价值和挑战的报告。我们招募了该小组的成员与我们一起设计一项调查。本文介绍了调查结果。我们的成员描述了好处，从支持研究到能够与他人分享他们的经验。成员面临的挑战是很难在履行其他承诺的同时参与其中。研究人员面临的挑战是维持该团队所需的资金和时间。其他挑战包括确保团队的多元化以及我们理解并满足成员的需求。我们报告我们将如何应对这些挑战，以便我们能够作为一个团队继续合作。