PLAIN ENGLISH SUMMARY Patient and public involvement (PPI) in research is very important, and funders and the NHS all expect this to happen. What this means in practice, and how to make it really successful, is therefore an important research question. This article analyses the experience of a research team using PPI, and makes recommendations on strengthening PPI in research. There were different PPI roles in our study - some people were part of the research team: some were on the advisory group; and there were patient groups who gave specific feedback on how to make research work better for their needs. We used minutes, other written documents, and structured individual and group reflections to learn from our own experiences over time. The main findings were:- for researchers and those in a PPI role to work in partnership, project structures must allow flexibility and responsiveness to different people's ideas and needs; a named link person can ensure support; PPI representatives need to feel fully included in the research; make clear what is expected for all roles; and ensure enough time and funding to allow meaningful involvement. Some roles brought more demands but also more rewards than others - highlighting that it is important that people giving up their time to help with research experience gains from doing so. Those contributing to PPI on a regular basis may want to learn new skills, rather than always doing the same things. Researchers and the public need to find ways to develop roles in PPI over time. We also found that, even for a team with expertise in PPI, there was a need both for understanding of different ways to contribute, and an evolving 'normalisation' of new ways of working together over time, which both enriched the process and the outputs. ABSTRACT Background Patient and public involvement (PPI) is now an expectation of research funders, in the UK, but there is relatively little published literature on what this means in practice - nor is there much evaluative research about implementation and outputs. Policy literature endorses the need to include PPI representation at all stages of planning, performing and research dissemination, and recommends resource allocation to these roles; but details of how to make such inputs effective in practice are less common. While literature on power and participation informs the debate, there are relatively few published case studies of how this can play out through the lived experience of PPI in research; early findings highlight key issues around access to knowledge, resources, and interpersonal respect. This article describes the findings of a case study of PPI within a study about PPI in research. Methods The aim of the study was to look at how the PPI representatives' inputs had developed over time, key challenges and changes, and lessons learned. We used realist evaluation and normalisation process theory to frame and analyse the data, which was drawn from project documentation, minutes of meetings and workshops, field notes and observations made by PPI representatives and researchers; documented feedback after meetings and activities; and the structured feedback from two formal reflective meetings. Results Key findings included the need for named contacts who support, integrate and work with PPI contributors and researchers, to ensure partnership working is encouraged and supported to be as effective as possible. A structure for partnership working enabled this to be enacted systematically across all settings. Some individual tensions were nonetheless identified around different roles, with possible implications for clarifying expectations and deepening understandings of the different types of PPI contribution and of their importance. Even in a team with research expertise in PPI, the data showed that there were different phases and challenges to 'normalising' the PPI input to the project. Mutual commitment and flexibility, embedded through relationships across the team, led to inclusion and collaboration. Conclusion Work on developing relationships and teambuilding are as important for enabling partnership between PPI representatives and researchers as more practical components such as funding and information sharing. Early explicit exploration of the different roles and their contributions may assist effective participation and satisfaction.

中文翻译：

---

学会合作-通过对公众参与的研究项目进行反思性分析而获得的经验教训。

普通英语摘要患者和公众参与（PPI）的研究非常重要，出资者和NHS都希望做到这一点。因此，这在实践中意味着什么以及如何使其真正成功，是一个重要的研究问题。本文分析了使用PPI的研究团队的经验，并提出了加强PPI研究的建议。我们的研究中有不同的PPI角色-有些人是研究团队的一部分：有些人在咨询小组中；有些人在研究小组中。还有一些患者群体就如何使研究更好地满足其需求提供了具体的反馈。我们使用了会议记录，其他书面文件以及结构化的个人和小组反思，以从我们自己的经验中学习。主要发现是：-供研究人员和具有PPI角色的研究人员合作进行，项目结构必须允许灵活性和对不同人的想法和需求的响应；指定的链接人可以确保支持；PPI代表需要感到自己被充分纳入研究；明确所有职位的期望；并确保有足够的时间和资金来进行有意义的参与。有些角色带来了更多的要求，但也比其他角色带来了更多的回报-突出表明，重要的是，人们应该花时间来帮助研究经验，从而获得收益。那些定期为PPI做出贡献的人可能想学习新技能，而不是总是做同样的事情。研究人员和公众需要找到逐步发展PPI角色的方法。我们还发现，即使对于拥有PPI专业知识的团队来说，也需要了解不同的贡献方式，并且需要不断发展的“ 随着时间的推移进行协作的新方法的标准化”，这既丰富了过程，也丰富了产出。摘要背景：在英国，患者和公众参与（PPI）现在是研究资助者的期望，但是关于这在实践中的含义的公开文献相对较少-也不存在有关实施和产出的评估研究。政策文献赞同需要在规划，执行和研究传播的所有阶段都包括PPI代表，并建议为这些角色分配资源；但是，如何在实践中使这种输入有效的细节并不常见。尽管有关权力和参与的文献为辩论提供了信息，但很少有已发表的案例研究说明如何通过PPI在研究中的实际经验发挥作用。早期发现突出了与获取知识，资源和人际关系有关的关键问题。本文介绍了有关PPI的研究中的PPI案例研究的结果。方法该研究的目的是研究PPI代表的意见是如何随着时间，关键挑战和变化以及经验教训而发展起来的。我们使用了现实的评估和规范化过程理论来对数据进行框架和分析，这些数据是从项目文档，会议和研讨会的纪要，现场笔记和PPI代表和研究人员的观察中得出的；会议和活动后记录的反馈意见；以及两次正式反思会议的结构化反馈。结果主要发现包括需要支持，整合和与PPI贡献者和研究人员合作的具名联系人，确保鼓励和支持伙伴关系工作尽可能有效。伙伴关系工作的结构使之可以在所有环境中系统地实施。尽管如此，围绕不同角色发现了一些个人紧张关系，可能对澄清期望和加深对PPI不同类型贡献及其重要性的理解产生影响。即使在具有PPI研究专业知识的团队中，数据也表明，“标准化”项目的PPI输入存在不同的阶段和挑战。通过整个团队中的关系相互承诺和保持灵活性，导致了包容和协作。结论建立关系和团队建设工作对于促进PPI代表与研究人员之间的伙伴关系同筹资和信息共享等更实际的组成部分一样重要。对不同角色及其贡献的早期显式探索可能有助于有效的参与和满意度。