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弥合差距:构建基础设施以支持社区 - 学术伙伴关系并提高开展以患者为中心的结局研究的能力。

Bridging the divide: building infrastructure to support community-academic partnerships and improve capacity to conduct patient-centered outcomes research.

作者信息

Huang Jennifer, Lipman Paula Darby, Daniel Mullins C

机构信息

Westat, 1600 Research Boulevard, Rockville, MD, 20850, USA.

University of Maryland, Baltimore, MD, 21201, USA.

出版信息

Transl Behav Med. 2017 Dec;7(4):773-782. doi: 10.1007/s13142-017-0487-z.

Abstract

For research to be useful, trustworthy, and ultimately lead to greater dissemination of findings to patients and communities, it is important to train and mentor academic researchers to meaningfully engage community members in patient-centered outcomes research (PCOR). Thus, it is necessary for research institutions to strengthen their underlying infrastructure to support PCOR. PATIENTS-PATient-centered Involvement in Evaluating effectiveNess of TreatmentS-at the University of Maryland, Baltimore, focuses on improving PCOR methods and addressing health disparities. It relies on evidence-based engagement methods to sustain and leverage innovative partnerships so patients, health care providers, and academic partners are motivated to participate in the conduct and dissemination of PCOR. Program components address training needs, bi-directional engagement, cultural competency, and dissemination and implementation. Activities (guided by community representatives, leadership from university schools, patient advocates, and PCOR experts) include providing resources, conducting PCOR projects, engaging community members, and disseminating PCOR findings. With its emphasis on the broad range of PCOR topics and methods, and through fostering sustainable relationships with community members and researchers, PATIENTS has successfully cultivated bi-directional partnerships and provided operational and scientific support for a new generation of skilled PCOR researchers. Early evidence of effectiveness includes progress in training and mentoring students and investigators, an increase in submission of PCOR proposals, and community-informed strategies for dissemination. Programs such as PATIENTS reinforce the value of bridging the traditional divide between academia and communities to support patient- and community-engaged dissemination and implementation research and foster sustainable PCOR infrastructure.

摘要

为了使研究有用、值得信赖并最终将研究结果更广泛地传播给患者和社区,培养和指导学术研究人员让社区成员有意义地参与以患者为中心的结局研究(PCOR)非常重要。因此,研究机构有必要加强其基础架构以支持PCOR。马里兰大学巴尔的摩分校的PATIENTS(患者参与治疗效果评估)项目专注于改进PCOR方法并解决健康差异问题。它依靠循证参与方法来维持和利用创新伙伴关系,从而使患者、医疗服务提供者和学术伙伴有动力参与PCOR的开展和传播。项目组成部分涉及培训需求、双向参与、文化能力以及传播与实施。活动(由社区代表、大学学院领导、患者权益倡导者和PCOR专家指导)包括提供资源、开展PCOR项目、让社区成员参与以及传播PCOR研究结果。PATIENTS项目强调了广泛的PCOR主题和方法,并通过与社区成员和研究人员建立可持续关系,成功培育了双向伙伴关系,并为新一代有技能的PCOR研究人员提供了运营和科学支持。有效性的早期证据包括在培训和指导学生及研究人员方面取得的进展、PCOR提案提交数量的增加以及基于社区的传播策略。像PATIENTS这样的项目强化了弥合学术界与社区之间传统鸿沟的价值,以支持患者和社区参与的传播与实施研究,并培育可持续的PCOR基础架构。

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