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首页> 外文期刊>Frontiers in Public Health >A Journey in Capacity Building: Revisiting the Mullins Framework for Meaningfully Engaging Patients in Patient Centered Outcomes Research
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A Journey in Capacity Building: Revisiting the Mullins Framework for Meaningfully Engaging Patients in Patient Centered Outcomes Research

机译：能力建设之旅：重新审视Mullins框架，以有意义的方式让患者参与以患者为中心的结果研究

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This paper reviews the implementation of the UNITE for Better Health Outcomes Eugene Washington PCORI Engagement Award project using Mullins and colleagues' Framework for Meaningfully Engaging Patients in Patient Centered Outcomes Research (PCOR) and the advantages and disadvantages of this framework. We combine Mullins' framework with the ten themes for guiding future studies in PCOR also developed by Mullins' research group. We interviewed patient stakeholders at the end of the engagement award and include patient stakeholder perspectives of how well we performed each of these steps. Despite some breakdowns in trust, which were eventually repaired, we successfully identified patient and family stakeholders; built partnerships with patients, researchers, providers, and community groups; explained the purpose of our project and the importance of PCOR; developed training materials for patients and providers; and updated our key constituents throughout the process. Overall, we believe combining Mullins' framework with the ten themes provides a solid roadmap for implementing a PCORI engagement award. Our main challenge was recruiting and keeping hard-to-reach patients and caregivers involved in the project. We believe this was due to our limitations more so than the framework. Based on the lessons we learned, we provide concrete recommendations for others who want to engage hard-to-reach patients using the Mullins framework.
机译：本文回顾了使用Mullins及其同事的“以患者为中心的结果研究使患者有意义地参与”框架（PCOR）来实现UNITE更好的健康结果Eugene Washington PCORI参与奖项目的实施以及该框架的优缺点。我们将Mullins的框架与十个主题相结合，以指导Mullins研究小组开发的PCOR的未来研究。在参与奖结束时，我们采访了患者利益相关者，并包括了患者利益相关者对我们执行这些步骤的效果的观点。尽管在信任方面有些失灵最终得以修复，但我们成功地确定了患者和家人的利益相关者。与患者，研究人员，提供者和社区团体建立伙伴关系;解释了我们项目的目的以及PCOR的重要性;为患者和提供者编写了培训材料;并在整个过程中更新了我们的关键要素。总体而言，我们认为将Mullins的框架与十个主题结合起来，为实施PCORI参与奖提供了坚实的路线图。我们的主要挑战是招募和保持难以接近的患者和护理人员参与该项目。我们认为，这是由于我们的局限性而不是框架所致。根据我们汲取的经验教训，我们为其他想要使用Mullins框架吸引难以到达的患者的患者提供具体建议。

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