Patient and Other Stakeholder Engagement in Patient-Centered Outcomes Research Institute Funded Studies of Patients with Kidney Diseases
Patient and Other Stakeholder Engagement in Patient-Centered Outcomes Research Institute Funded Studies of Patients with Kidney Diseases
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DOI：
10.2215/cjn.09780915
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发表时间：
2016-09-01
影响因子：
9.8
通讯作者：
Mehrotra, Rajnish
中科院分区：
文献类型：
--
作者：
Cukor, Daniel;Cohen, Lewis M.;Mehrotra, Rajnish
在研究试验的设计和实施中纳入目标人群是对我国卫生保健系统中日益增长的健康差距的一种回应，也是对研究普遍性的一种帮助。以社区为基础的参与性研究的一种类型是"以病人为中心的研究"，在这种研究中，病人对密切相关的研究问题和方法的看法被纳入研究。以患者为中心的结局研究所（PCORI）要求将有意义的患者和利益相关者参与纳入所有应用程序。截至2015年3月，PCORI资助了7项针对肾脏疾病患者的临床研究。本文的目的是综合这些研究的经验，以了解肾脏疾病临床研究中如何进行有意义的患者和利益相关者参与，以及实施的关键障碍是什么。我们的集体经验表明，成功实施患者和利益相关者参与的研究范式包括：（1）定义角色和纳入输入的过程;（2）识别特定的患者和其他利益相关者;（3）让患者和其他利益相关者参与，使他们认识到自己参与的价值，并在研究过程中进行个人投资;以及（4）克服出现并威胁协作生产力的障碍和挑战。我们希望，这些研究的经验将进一步的兴趣和能力，将患者和利益相关者的观点纳入肾脏疾病的研究。
Including target populations in the design and implementation of research trials has been one response to the growing health disparities endemic to our health care system, as well as an aid to study generalizability. One type of community-based participatory research is "Patient Centered-Research", in which patient perspectives on the germane research questions and methodologies are incorporated into the study. The Patient-Centered Outcomes Research Institute (PCORI) has mandated that meaningful patient and stakeholder engagement be incorporated into all applications. As of March 2015, PCORI funded seven clinically-focused studies of patients with kidney disease. The goal of this paper is to synthesize the experiences of these studies to gain an understanding of how meaningful patient and stakeholder engagement can occur in clinical research of kidney diseases, and what the key barriers are to its implementation. Our collective experience suggests that successful implementation of a patient- and stakeholder-engaged research paradigm involves: (1) defining the roles and process for the incorporation of input; (2) identifying the particular patients and other stakeholders; (3) engaging patients and other stakeholders so they appreciate the value of their own participation and have personal investment in the research process; and (4) overcoming barriers and challenges that arise and threaten the productivity of the collaboration. It is our hope that the experiences of these studies will further interest and capacity for incorporating patient and stakeholder perspectives in research of kidney diseases.