Patients should be involved in the design, conduct and dissemination of research that affects them. Patient involvement leads to empowerment and enhances the quality of research. Differing motives and expectations between researchers and patients involved can hamper involvement. We wanted to learn more about patients’ and researchers’ motives and expectations in order to improve the benefits of involvement for all parties. We implemented a patient board with ten patients and five researchers for a trial on urinary tract infections (UTIs). We asked each patient and researcher about his or her motivation and expectations regarding the patient board. We found that patients’ motivations included the wish to improve the treatment of UTIs, to support patient involvement as a principle, and to enhance the benefit of others. Furthermore they were interested in learning how a patients’ board works and in exchanging with peers and scientists. In addition, a (modest) monetary incentive for involvement was welcomed.Researchers were motivated by the possibility to improve research and to contribute to the empowerment of patients. They also wanted to enhance their career opportunities, to learn more about patient involvement and to meet the increasing demand for it. Some patients expressed insecurity about their roles and tasks in the patient board. Among the researchers, some envisaged a rather passive role for themselves in the patient board while others expected to take over a more active role. Researchers emphasized that the ways and the means of communication between the researchers and the patients should be explicitly discussed. Background It has been increasingly recognized that patients should be actively involved in the design, conduct and dissemination of research. Besides empowering patients and democratizing research, involvement can enhance the quality of research and the development of equitable healthcare solutions. Differing motives and expectations between researchers and involved patients can hamper the conduct of involvement. However, little is known about patients’ and researchers’ motivations for involvement. Our aim was to study the motivation and expectations of patients and researchers towards patient and public involvement (PPI). Methods We implemented a patient board comprising ten patients and five researchers for a randomized controlled trial on the treatment of urinary tract infections (UTI). Prior to the first board meeting, we conducted telephone interviews with all researchers and patients regarding their motivation for involvement in the patient board and their expectations. The interviews were analyzed using thematic qualitative text analysis. Results Patients’ motivations included interest in improving UTI treatment, in supporting PPI, engaging for the benefit of others, exchanging with peers and scientists as well as in the methods of the board and the monetary incentive. Researchers wanted to improve research, enhance their professional development, empower patients, meet the formal demand for PPI, and learn about PPI. Regarding expectations, patients expressed insecurities about their roles, tasks and topics of discussion. They wished for an open exchange and hoped their involvement would make an impact. Researchers’ expectations for their own roles ranged between being a rather passive supporting force and active engagement in the board. The question of how to ensure the communication between the trial team and the patient board was of high importance for the researchers. Conclusions Patients’ and researchers’ motives and expectations were similar in some aspects but differed regarding agenda setting and understanding of their roles. Getting to know patients’ and researchers’ motivations and expectations at the beginning allowed us to anticipate potential conflicts or disappointments early on and to take them into consideration during the conduct of our PPI.

中文翻译：

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患者参与临床试验：参与尿路感染试验的患者和研究人员之间的动机和期望不同

患者应参与影响他们的研究的设计、实施和传播。患者参与可以增强研究能力并提高研究质量。研究人员和相关患者之间的不同动机和期望可能会阻碍参与。我们想更多地了解患者和研究人员的动机和期望，以提高各方参与的好处。我们实施了一个由 10 名患者和 5 名研究人员组成的患者委员会，用于尿路感染 (UTI) 试验。我们向每位患者和研究人员询问了他或她对患者委员会的动机和期望。我们发现，患者的动机包括希望改善尿路感染的治疗，支持患者参与作为原则，以及提高他人的利益。此外，他们对了解患者委员会的工作方式以及与同行和科学家交流感兴趣。此外，对参与的（适度）金钱激励措施表示欢迎。研究人员的动机是有可能改进研究并为赋予患者权力做出贡献。他们还希望增加他们的职业机会，更多地了解患者参与并满足日益增长的需求。一些患者对他们在患者委员会中的角色和任务表示不安全。在研究人员中，一些人设想自己在患者委员会中扮演一个相当被动的角色，而另一些人则希望担任更积极的角色。研究人员强调，应明确讨论研究人员与患者之间的沟通方式和方式。背景 人们越来越认识到，患者应该积极参与研究的设计、实施和传播。除了赋予患者权力和使研究民主化外，参与还可以提高研究质量和开发公平的医疗保健解决方案。研究人员和相关患者之间的不同动机和期望可能会阻碍参与的行为。然而，关于患者和研究人员参与的动机知之甚少。我们的目的是研究患者和研究人员对患者和公众参与 (PPI) 的动机和期望。方法 我们实施了一个由 10 名患者和 5 名研究人员组成的患者委员会，用于治疗尿路感染 (UTI) 的随机对照试验。在第一次董事会会议之前，我们对所有研究人员和患者进行了电话采访，了解他们参与患者委员会的动机和期望。使用主题定性文本分析对访谈进行分析。结果 患者的动机包括对改善 UTI 治疗的兴趣、支持 PPI、为他人的利益而参与、与同行和科学家交流以及董事会的方法和金钱激励。研究人员希望改进研究，加强他们的专业发展，赋予患者权力，满足对 PPI 的正式需求，并了解 PPI。关于期望，患者对他们的角色、任务和讨论主题表达了不安全感。他们希望进行公开交流，并希望他们的参与会产生影响。研究人员对自己角色的期望介于成为相当被动的支持力量和积极参与董事会之间。对于研究人员来说，如何确保试验团队与患者委员会之间的沟通非常重要。结论 患者和研究人员的动机和期望在某些方面相似，但在议程设置和对其角色的理解方面存在差异。一开始就了解患者和研究人员的动机和期望，使我们能够及早预测潜在的冲突或失望，并在进行 PPI 时将其考虑在内。对于研究人员来说，如何确保试验团队与患者委员会之间的沟通非常重要。结论 患者和研究人员的动机和期望在某些方面相似，但在议程设置和对其角色的理解方面存在差异。一开始就了解患者和研究人员的动机和期望，使我们能够及早预测潜在的冲突或失望，并在进行 PPI 时将其考虑在内。对于研究人员来说，如何确保试验团队与患者委员会之间的沟通非常重要。结论 患者和研究人员的动机和期望在某些方面相似，但在议程设置和对其角色的理解方面存在差异。一开始就了解患者和研究人员的动机和期望，使我们能够及早预测潜在的冲突或失望，并在进行 PPI 时将其考虑在内。