PDF(Pubmed)
Abstract：
Research projects, initiatives and conferences that include patients as partners rather than as participants are becoming more common. Including patients as partners (what we will call \'patient partners\') is an approach called patient engagement or involvement in research, and we will call it patient engagement throughout this paper. Patient engagement moves traditional health research conferences and events to include a broader audience for their knowledge exchange and community building efforts, beyond academics and healthcare professionals. However, there are few examples of conferences where patients are given the opportunity to fully lead. Our conference went beyond patient engagement - it was patient-led. Patient partners conceived, planned, and decided on all aspects of a virtual conference.We present the work and processes we undertook throughout 2023 to create and produce a free conference called \"PxP: For patients, by patients\" or PxP for short, with a tagline of \"Partnering to make research stronger.\" PxP was patient-led and about patient engagement in research rather than a specific disease or condition. PxP was supported by the Canadian Institutes of Health Research Institute of Musculoskeletal Health and Arthritis. The PxP website, known as the PxP Hub, now houses the conference recordings along with resources about patient engagement in research. These resources were recommended by the PxP Steering Committee members, speakers, and others who attended the 2023 conference. Here we lead you through how the idea for PxP was generated; how the international patient partner Steering Committee was convened and supported; how PxP was brought to life over nine months; the PxP 3-day event and feedback collected to improve future efforts; trade-offs, challenges and learnings; and resources required to support this type of event. We close with what the future holds for PxP in 2024 and beyond.It\'s time to elevate patients into leadership roles for conferences and events, and we encourage you to adopt the PxP ethos by using or adapting our approach and resources to support your opportunity.
摘要：
研究项目,将患者作为合作伙伴而不是参与者的倡议和会议变得越来越普遍。将患者作为合作伙伴（我们称之为“患者合作伙伴”）是一种称为患者参与或参与研究的方法，在整个论文中，我们将称之为耐心参与。患者参与推动传统的健康研究会议和活动，让更广泛的受众参与他们的知识交流和社区建设工作，超越学术和医疗保健专业人员。然而,很少有会议的例子让患者有机会全面领导。我们的会议超越了患者的参与-由患者主导。怀上了耐心的伴侣，计划,并决定了虚拟会议的各个方面。我们介绍了我们在2023年所做的工作和流程，以创建和制作一个名为“PxP：对于患者，由患者\“或简称PxP，以“合作让研究变得更强大”为口号。“PxP是由患者主导的，是关于患者参与研究的，而不是特定的疾病或病症。PxP得到了加拿大健康研究所肌肉骨骼健康和关节炎研究所的支持。PxP网站，被称为PxP集线器，现在包含会议记录以及有关患者参与研究的资源。这些资源是PxP指导委员会成员建议的，扬声器,以及参加2023年会议的其他人。在这里，我们带领您了解PxP的想法是如何产生的；国际患者合作伙伴指导委员会是如何召集和支持的；PxP是如何在九个月内实现的；PxP3天活动和收集的反馈意见，以改善未来的努力；权衡，挑战和学习；以及支持此类活动所需的资源。我们以2024年及以后的PxP的未来结束。是时候把病人提升到会议和活动的领导角色了，我们鼓励您通过使用或调整我们的方法和资源来支持您的机会，从而采用PxP精神。
