PLAIN ENGLISH SUMMARY The impacts of involvement in research are often described in terms of the difference made to the research, the people involved and less frequently the researchers. This paper focuses on the researchers' experiences of involvement, based on an evaluation of a pilot project supporting patient/carer involvement in research at Parkinson's UK. Telephone interviews were conducted with researchers from eight different research projects with involvement. The researchers reported gaining new knowledge from patients and carers. They used this knowledge to change their project designs, interventions and new devices. They also gained new skills in communicating with the public. Meeting patients for the first time had a profound impact on some researchers, causing a change in their professional values. Face-to-face contact seemed particularly important to gain a sense of the 'people behind the data', which suggests such meetings may result in impacts beyond those typically achieved through an exchange of documents. Involvement also influenced one researcher's choices and preferences, in terms of who to ask to take part in their study In summary, researchers often learn something new from talking to patients and carers. Facilitating this conversation seems important to maximise the impact of this learning. In future, it might be helpful for evaluations of involvement to ask researchers in more detail about what they learnt from patients/carers and how they applied their new skills and knowledge. This may help to understand how involvement can influence researchers' thinking to have an impact on research. ABSTRACT Background The impacts of patient/public involvement are often described in terms of the difference made to the research, the researchers and the people involved. Involvement often impacts on research by influencing the design, delivery and dissemination. Patients/the public report gaining new skills and knowledge, increased self-confidence, and satisfaction from making a difference. There are fewer reports of the impacts on researchers. This paper discusses the findings from an evaluation of a pilot project supporting patient/carer involvement in research at Parkinson's UK, focusing on the researchers' experiences. Methods Semi-structured telephone interviews were conducted with one researcher from each of the eight research projects which involved patients/carers in the pilot. The findings were analysed using theoretical thematic analysis. Results and discussion Learning can be described as acquiring new knowledge, behaviours, skills, values, or preferences. The researchers' reports reflected these different types of learning. They reported gaining new knowledge from patients and carers, which they recognised as distinct from their textbook knowledge of the condition. They used this learning to change their project designs and their new interventions and devices. They also gained new skills in communicating with patients and carers about the aims and significance of their research. Meeting patients for the first time had a profound impact on some researchers causing them to change their professional values. Face-to-face contact seemed particularly important to gain a sense of the 'people behind the data', which suggests such meetings may result in impacts beyond those typically achieved through an exchange of documents. The involvement also influenced one researchers' priorities and preferences, in terms of what questions to ask and of whom, in their project. Conclusions Researchers learn from an exchange of knowledge with patients/ carers, which influences their plans and actions. This seems to be one way that involvement subsequently has an impact on research. Facilitating this exchange seems important to support mutual learning and to enhance the impact on researchers. Future evaluations of involvement might benefit from exploring what researchers learnt from patients/carers and how they applied their new skills and knowledge.

中文翻译：

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参与对研究人员的影响：学习经历。

普通英语摘要参与研究的影响通常是根据对研究，参与人员和研究人员的不同做出的差异来描述的。本文基于对支持帕金森英国研究的患者/护理人员参与的试点项目的评估，着重于研究人员的参与经验。与来自八个不同研究项目的研究人员进行了电话采访。研究人员报告说，他们从患者和护理人员那里获得了新知识。他们利用这些知识来更改他们的项目设计，干预措施和新设备。他们还获得了与公众沟通的新技能。首次与患者会面对一些研究人员产生了深远的影响，从而改变了他们的专业价值观。面对面的接触对于理解“数据背后的人”似乎特别重要，这表明此类会议可能会产生超出通常通过交换文件获得的影响。在要求谁参加研究方面，参与也影响了一位研究人员的选择和偏好。总而言之，研究人员经常通过与患者和护理人员交谈来学习一些新知识。促进这种对话对于最大化学习的影响似乎很重要。将来，对参与者的评估可能会有所帮助，让研究人员更详细地了解他们从患者/护理人员那里学到了什么，以及他们如何运用新技能和新知识。这可能有助于了解参与程度如何影响研究人员的思想，从而对研究产生影响。摘要背景通常根据对研究，研究人员和相关人员的不同来描述患者/公众参与的影响。参与通常会影响设计，交付和传播，从而影响研究。患者/公共报告通过有所作为而获得了新的技能和知识，增强了自信心，并获得了满意。关于对研究人员影响的报道较少。本文讨论了一项支持患者/护理人员参与英国帕金森研究的试点项目评估的结果，重点是研究人员的经验。方法对来自八个研究项目的每个研究人员中的一名研究人员进行了半结构化电话采访，该试验涉及患者/护理人员。研究结果使用理论主题分析进行了分析。结果与讨论学习可以描述为获得新知识，行为，技能，价值观或偏好。研究人员的报告反映了这些不同类型的学习。他们报告说从患者和护理人员那里获得了新知识，他们认为这与他们的病情教科书知识不同。他们利用这种学习来更改项目设计以及新的干预措施和设备。他们还获得了与患者和护理人员交流研究目的和意义的新技能。首次与患者会面对一些研究人员产生了深远的影响，使他们改变了自己的专业价值观。面对面的交流对于理解“数据背后的人”似乎特别重要，这表明此类会议可能产生的影响超出了通常通过交换文件获得的影响。参与还影响了一位研究人员的优先事项和偏好，涉及哪些问题要问以及谁在项目中向谁提问。结论研究人员从与患者/护理人员的知识交流中学习，这影响了他们的计划和行动。这似乎是参与随后对研究产生影响的一种方式。促进这种交流对于支持相互学习并增强对研究人员的影响似乎很重要。探索研究人员从患者/护理人员那里学到的东西以及他们如何运用新技能和知识，可能会对未来的参与度评估有所帮助。参与还影响了一位研究人员的优先事项和偏好，涉及哪些问题要问以及谁在项目中向谁提问。结论研究人员从与患者/护理人员的知识交流中学习，这影响了他们的计划和行动。这似乎是参与随后对研究产生影响的一种方式。促进这种交流对于支持相互学习并增强对研究人员的影响似乎很重要。探索研究人员从患者/护理人员那里学到的东西以及他们如何运用新技能和知识，可能会对未来的参与度评估有所帮助。参与还影响了一位研究人员的优先事项和偏好，涉及要问哪些问题以及在项目中向谁提问。结论研究人员从与患者/护理人员的知识交流中学习，这影响了他们的计划和行动。这似乎是参与随后对研究产生影响的一种方式。促进这种交流对于支持相互学习并增强对研究人员的影响似乎很重要。探索研究人员从患者/护理人员那里学到的东西以及他们如何运用新技能和知识，可能会对未来的参与度评估有所帮助。影响他们的计划和行动。这似乎是参与随后对研究产生影响的一种方式。促进这种交流对于支持相互学习并增强对研究人员的影响似乎很重要。探索研究人员从患者/护理人员那里学到的东西以及他们如何运用新技能和知识，可能会对未来的参与度评估有所帮助。影响他们的计划和行动。这似乎是参与随后对研究产生影响的一种方式。促进这种交流对于支持相互学习并增强对研究人员的影响似乎很重要。探索研究人员从患者/护理人员那里学到的东西以及他们如何运用新技能和知识，可能会对未来的参与度评估有所帮助。