Division of Hospital Medicine, University of California San Francisco, San Francisco, California.
University of Miami Health System, Miami, Florida.
Health Expect. 2019 Jun;22(3):307-316. doi: 10.1111/hex.12873. Epub 2019 Feb 13.
Health research is evolving to include patient stakeholders (patients, families and caregivers) as active members of research teams. Frameworks describing the conceptual foundations underlying this engagement and strategies detailing best practice activities to facilitate engagement have been published to guide these efforts.
The aims of this narrative review are to identify, quantify and summarize (a) the conceptual foundational principles of patient stakeholder engagement in research and (b) best practice activities to support these efforts. SEARCH STRATEGY, INCLUSION CRITERIA, DATA EXTRACTION AND SYNTHESIS: We accessed a publicly available repository of systematically identified literature related to patient engagement in research. Two reviewers independently screened articles to identify relevant articles and abstracted data.
We identified 990 potentially relevant articles of which 935 (94.4%) were excluded and 55 (5.6%) relevant. The most commonly reported foundational principles were "respect" (n = 25, 45%) and "equitable power between all team members" (n = 21, 38%). Creating "trust between patient stakeholders and researchers" was described in 17 (31%) articles. Twenty-seven (49%) articles emphasized the importance of providing training and education for both patient stakeholder and researchers. Providing financial compensation for patient stakeholders' time and expertise was noted in 19 (35%) articles. Twenty articles (36%) emphasized regular, bidirectional dialogue between patient partners and researchers as important for successful engagement.
Engaging patient stakeholders in research as partners presents an opportunity to design, implement and disseminate patient-centred research. This review creates an overarching foundational framework for authentic and sustainable partnerships between patient stakeholders and researchers.
健康研究正在发展，将患者利益相关者（患者、家属和照护者）纳入研究团队，作为积极成员。已经发布了描述这种参与的概念基础的框架以及详细说明促进参与的最佳实践活动的策略，以指导这些努力。
本叙述性综述的目的是确定、量化和总结（a）患者利益相关者参与研究的概念基础原则，以及（b）支持这些努力的最佳实践活动。
检索策略、纳入标准、数据提取和综合：我们访问了一个公开的、系统地确定与患者参与研究相关文献的存储库。两名审查员独立筛选文章，以确定相关文章并提取数据。
我们确定了 990 篇可能相关的文章，其中 935 篇（94.4%）被排除在外，55 篇（5.6%）相关。报告最多的基础原则是“尊重”（n=25，45%）和“所有团队成员之间平等的权力”（n=21，38%）。有 17 篇文章（31%）描述了“在患者利益相关者和研究人员之间建立信任”。27 篇文章（49%）强调了为患者利益相关者和研究人员提供培训和教育的重要性。有 19 篇文章（35%）指出，为患者利益相关者的时间和专业知识提供经济补偿的重要性。20 篇文章（36%）强调了患者伙伴和研究人员之间定期、双向对话的重要性，这对成功的参与至关重要。
将患者利益相关者作为合作伙伴纳入研究提供了一个机会，可以设计、实施和传播以患者为中心的研究。本综述为患者利益相关者和研究人员之间建立真实和可持续的伙伴关系创建了一个总体基础框架。
