Patient engagement in research is important to ensure research questions address problems important to patients, that research is designed in a way that can effectively answer those questions, and that findings are applicable, relevant, and credible. Yet, patients are rarely involved in the dissemination stage of research. This study explored one way to engage patients in dissemination, through co-presenting research. Semi-structured, one-on-one, audio-recorded interviews were conducted with researchers and patients who co-presented research at one patient conference (the 2022 Canadian National Scleroderma Conference) in Canada. A pragmatic orientation was adopted, and following verbatim transcription, data were analyzed using conventional content analysis. Of 8 researchers who were paired with 7 patients, 5 researchers (mean age = 28 years, SD = 3.6 years) and 5 patients (mean age = 45 years, SD = 14.2 years) participated. Researcher and patient perspectives about their experiences co-presenting and how to improve the experience were captured across 4 main categories: (1) Reasons for accepting the invitation to co-present; (2) Degree that co-presenting expectations were met; (3) The process of co-presenting; and (4) Lessons learned: recommendations for co-presenting. Findings from this study suggest that the co-presenting experience was a rewarding and enjoyable way to tailor research dissemination to patients. We identified a patient-centred approach and meaningful and prolonged patient engagement as essential elements underlying co-presenting success. Involving patients throughout the entire research process is important to ensure research effectively addresses problems important to patients and that findings are applicable, relevant, and credible. Yet, patients are rarely involved in the dissemination of research. We explored one way to engage patients in dissemination, through co-presenting research. We conducted one-on-one interviews with 5 researchers and 5 patients who co-presented research at a patient conference in Canada. Both researchers and patients indicated that the co-presenting experience was rewarding and enjoyable and a useful way to tailor dissemination to patients. We found that a patient-centred approach and meaningful and prolonged patient engagement were essential elements underlying co-presenting success.

中文翻译：

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研究人员和患者在患者会议上向系统性硬化症患者共同展示研究成果的经历：访谈内容分析

患者参与研究对于确保研究问题解决对患者重要的问题非常重要，研究的设计方式可以有效回答这些问题，并且研究结果适用、相关且可信。然而，患者很少参与研究的传播阶段。这项研究探索了一种通过共同呈现研究来吸引患者参与传播的方法。我们对在加拿大举行的一次患者会议（2022 年加拿大全国硬皮病会议）上共同发表研究成果的研究人员和患者进行了半结构化、一对一的录音采访。采用务实的方向，在逐字转录后，使用传统的内容分析来分析数据。在与 7 名患者配对的 8 名研究人员中，有 5 名研究人员（平均年龄 = 28 岁，SD = 3.6 岁）和 5 名患者（平均年龄 = 45 岁，SD = 14.2 岁）参与。研究人员和患者对共同呈现的经历以及如何改善体验的看法分为四个主要类别：（1）接受共同呈现邀请的原因；（二）共同呈现期望的满足程度；（三）共同呈现的过程；(4) 经验教训：共同演讲的建议。这项研究的结果表明，共同呈现体验是一种有益且令人愉快的方式，可以为患者定制研究传播。我们确定以患者为中心的方法以及有意义且长期的患者参与是共同呈现成功的基本要素。让患者参与整个研究过程对于确保研究有效解决对患者重要的问题以及研究结果的适用性、相关性和可信性非常重要。然而，患者很少参与研究的传播。我们探索了一种通过共同展示研究来吸引患者参与传播的方法。我们对 5 名研究人员和 5 名患者进行了一对一的采访，他们在加拿大的一次患者会议上共同展示了研究成果。研究人员和患者都表示，共同呈现的体验是有益且令人愉快的，并且是为患者量身定制传播的有用方式。我们发现，以患者为中心的方法以及有意义且长期的患者参与是共同呈现成功的基本要素。