Background: Given the many challenges of conducting research that addresses the palliative and end-of-life care needs of patients with serious illnesses, stakeholder engagement starting from the moment of study conceptualization and design is critical to ensure successful participant recruitment, data collection, intervention delivery, data analysis, and dissemination.

Methods: Guided by a conceptual model published by the Patient-Centered Outcomes Research Institute (PCORI) entitled, "Measuring What Matters for Advancing the Science and Practice of Engagement"14 and with the support of a PCORI Engagement Officer, representatives from 9 PCORI-funded study teams formed a working group to survey team members and review, outline, and describe key lessons learned and best practices for promoting stakeholder engagement in palliative care research.

Results: Almost all study teams engaged with patients/caregivers, clinicians, researchers, and health care system experts as stakeholder partners. About half the teams also included payers and training institutions as part of their stakeholder advisors as well as a range of content experts. Study teams relied on a variety of support structures and resources, and they employed 10 distinct methods for maintaining engagement. All engagement methods were generally considered to be effective by teams who used the method, though there was some variability in team-rated engagement quality of each method. Nine barriers to stakeholder engagement were identified across the 9 studies as well as 9 strategies (or facilitators) to overcome these barriers. We share examples of how stakeholder engagement impacted studies in all phases, including the preparatory phase, study initiation phase, execution phase, and data analysis/dissemination phase.

Conclusions: Teams utilized a variety of resources and support structures as well as capitalized on multiple engagement methods for fostering stakeholder engagement, resulting in a high level of collaboration and integration.

Copyright © 2024 The Author(s). Published by Wolters Kluwer Health, Inc.

背景: 鉴于解决严重疾病患者姑息治疗和临终关怀需求的研究面临的诸多挑战，从研究概念化和设计阶段就开始与利益相关者进行互动至关重要，以确保成功招募参与者、收集数据、实施干预措施、数据分析以及成果传播。

方法: 在患者为中心的结果研究所（Patient-Centered Outcomes Research Institute, PCORI）发布的概念模型“衡量重要性：推进参与的科学和实践”14的指导下，并得到了PCORI参与官员的支持，9个由PCORI资助的研究团队的代表组成了一个工作组，对团队成员进行调查，回顾、概述并描述了促进姑息治疗研究中利益相关者参与的关键经验和最佳做法。

结果: 几乎所有研究团队都与患者/照顾者、临床医生、研究人员和医疗系统专家作为利益相关者合作伙伴进行了互动。约有一半的团队还将其支付方和培训机构纳入了其利益相关者顾问，并包括了一系列内容专家。研究团队依靠各种支持结构和资源，使用了10种不同的方法来维持参与度。所有被使用的参与方法通常都被认为是有效的，尽管各团队对每种方法的有效性评价存在一些差异。在9项研究中，共确定了九个利益相关者参与的障碍以及应对这些障碍的九种策略（或促进因素）。我们分享了一些例子，展示了利益相关者在整个预备阶段、研究启动阶段、执行阶段和数据分析/传播阶段如何影响研究。

结论: 团队利用了各种资源和支持结构，并充分利用多种参与方法来培育利益相关者的参与度，从而实现了高水平的协作与融合。

版权所有 © 2024 The Author(s). 刊载于 Wolters Kluwer Health, Inc.