Patient and Stakeholder Engagement in the PCORI Pilot Projects: Description and Lessons Learned.
Patient and Stakeholder Engagement in the PCORI Pilot Projects: Description and Lessons Learned.
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PCORI 试点项目中的患者和利益相关者参与：描述和经验教训。
DOI：
10.1007/s11606-015-3450-z
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发表时间：
2016-01
影响因子：
5.7
通讯作者：
Frank L
中科院分区：
文献类型：
--
作者：
Forsythe LP;Ellis LE;Edmundson L;Sabharwal R;Rein A;Konopka K;Frank L
患者和医疗保健利益相关者越来越多地参与生物医学研究的规划和实施。然而，对这一过程或其影响的研究有限。我们的目的是描述患者和利益相关者参与由以患者为中心的结果研究所（PCARI）资助的50个试点项目，并确定早期的贡献和经验教训。研究人员在项目启动后6至12个月内完成了自我报告工具。47名主要研究者或其指定人员（94%应答率）参与了研究。主要测量指标：参与的利益相关者类型的自我报告，参与的阶段和水平，参与的促进者和障碍，吸取的经验教训，以及参与的贡献进行了测量。大多数（83%）报告称，他们的项目中有一个以上的利益相关者。其中，最常报告的群体是患者（90%）、临床医生（87%）、卫生系统代表（44%）、护理人员（41%）和倡导组织（41%）。利益相关者通常参与主题征集，问题开发，研究设计和数据收集。许多项目让利益攸关方参与数据分析、结果解释和传播。通常报告的贡献包括项目方法、成果或目标的改变;衡量工具的改进;以及定性数据的解释。调查人员经常将沟通和共享领导策略确定为“至关重要”的促进因素（分别为53%和44%）;缺乏利益相关者时间是最常见的挑战（46%）。大多数挑战只是部分得到解决。早期吸取的经验教训包括持续和真正的伙伴关系的重要性、利益攸关方的战略选择以及满足利益攸关方的实际需要。PCORI试点项目的调查人员报告说，他们在研究的许多阶段都与各种利益相关者进行了接触，他们的研究发生了一些具体的变化。这项研究确定了早期的经验教训和障碍，应加以解决，以促进参与。虽然这项研究表明利益相关者参与的潜在影响，但需要在研究的多个阶段对参与进行系统的描述和评价，以建立证据基础。本文的在线版本（doi：10.1007/s11606-015-3450-z）包含补充材料，可供授权用户使用。
Patients and healthcare stakeholders are increasingly becoming engaged in the planning and conduct of biomedical research. However, limited research characterizes this process or its impact. We aimed to characterize patient and stakeholder engagement in the 50 Pilot Projects funded by the Patient-Centered Outcomes Research Institute (PCORI), and identify early contributions and lessons learned. A self-report instrument was completed by researchers between 6 and 12 months following project initiation. Forty-seven principal investigators or their designees (94 % response rate) participated in the study. MAIN MEASURES Self-report of types of stakeholders engaged, stages and levels of engagement, facilitators and barriers to engagement, lessons learned, and contributions from engagement were measured. Most (83 %) reported engaging more than one stakeholder in their project. Among those, the most commonly reported groups were patients (90 %), clinicians (87 %), health system representatives (44 %), caregivers (41 %), and advocacy organizations (41 %). Stakeholders were commonly involved in topic solicitation, question development, study design, and data collection. Many projects engaged stakeholders in data analysis, results interpretation, and dissemination. Commonly reported contributions included changes to project methods, outcomes or goals; improvement of measurement tools; and interpretation of qualitative data. Investigators often identified communication and shared leadership strategies as “critically important” facilitators (53 and 44 % respectively); lack of stakeholder time was the most commonly reported challenge (46 %). Most challenges were only partially resolved. Early lessons learned included the importance of continuous and genuine partnerships, strategic selection of stakeholders, and accommodation of stakeholders’ practical needs. PCORI Pilot Projects investigators report engaging a variety of stakeholders across many stages of research, with specific changes to their research attributed to engagement. This study identifies early lessons and barriers that should be addressed to facilitate engagement. While this research suggests potential impact of stakeholder engagement, systematic characterization and evaluation of engagement at multiple stages of research is needed to build the evidence base. The online version of this article (doi:10.1007/s11606-015-3450-z) contains supplementary material, which is available to authorized users.