Demian Maryam N, Lam Ngan N, Mac-Way Fabrice, Sapir-Pichhadze Ruth, Fernandez Nicolas
Department of Psychology, Simon Fraser University, Burnaby, British Columbia, Canada.
Division of Nephrology, Department of Medicine, University of Alberta, Edmonton, Canada.
Can J Kidney Health Dis. 2017 Apr 12;4:2054358117703070. doi: 10.1177/2054358117703070. eCollection 2017.
The purpose of this review is to provide a summary of the rationale for engaging patients in research as well as to review the established and envisioned advantages and strategies for patient-researcher partnerships. The authors of this article, which include a patient and 4 researchers in kidney disease, discuss the expected benefits and opportunities for patient engagement in their respective research programs. The 4 research programs span the spectrum of kidney disease and focus on enhancing bone health, increasing living donor kidney transplants, improving medication adherence, and preventing kidney transplant rejection.
The sources of information for this review include published studies on the topics of patient engagement and the 4 research programs of the new investigators.
(1) Patient, health care provider, and researcher partnerships can contribute useful insights capable of enhancing research in kidney disease. (2) Regardless of the research program, there are various strategies and opportunities for engagement of patients with lived experience across the various stages of research in kidney disease. (3) Envisioned advantages of patient-researcher partnerships include: targeting patient-identified research priorities, integrating patients' experiential knowledge, improving study design and feasibility through patient-researcher input, facilitating dissemination of research findings to other patients, effectively responding to patient concerns about studies, and inspiring researchers to conduct their research.
The limitations of the current review include the relative scarcity of literature on patient engagement within the field of kidney disease.
The findings of the current review suggest that it will be important for future studies to identify optimal strategies for patient engagement in setting research priorities, study design, participant recruitment, execution of research projects, and knowledge dissemination and translation.
本综述旨在总结让患者参与研究的基本原理,同时回顾患者与研究者合作已确立的及设想中的优势和策略。本文作者包括一名患者和4名肾病领域的研究人员,他们讨论了患者参与各自研究项目的预期益处和机会。这4个研究项目涵盖了肾病的各个方面,重点关注增强骨骼健康、增加活体供肾移植、提高药物依从性以及预防肾移植排斥反应。
本综述的信息来源包括已发表的关于患者参与主题的研究以及新研究人员的4个研究项目。
(1)患者、医疗服务提供者和研究者之间的合作能够提供有助于增强肾病研究的见解。(2)无论研究项目如何,在肾病研究的各个阶段,都有各种策略和机会让有实际经验的患者参与进来。(3)患者与研究者合作设想中的优势包括:以患者确定的研究重点为目标、整合患者的经验知识、通过患者与研究者的投入改进研究设计和可行性、促进将研究结果传播给其他患者、有效回应患者对研究的关切以及激励研究者开展研究。
当前综述的局限性包括肾病领域内关于患者参与的文献相对较少。
当前综述的结果表明,对于未来的研究来说,确定患者参与设定研究重点、研究设计、参与者招募、研究项目执行以及知识传播与转化的最佳策略将很重要。