推进类风湿病学研究项目中患者参与情况报告的框架
Framework for Advancing the Reporting of Patient Engagement in Rheumatology Research Projects.
作者信息
Hamilton Clayon B, Leese Jenny C, Hoens Alison M, Li Linda C
机构信息
Department of Physical Therapy, University of British Columbia, Vancouver, BC, Canada.
Arthritis Research Canada, 5591 No. 3 Road, Richmond, BC, V6X 2C7, Canada.
出版信息
Curr Rheumatol Rep. 2017 Jul;19(7):38. doi: 10.1007/s11926-017-0666-4.
Abstract
PURPOSE OF REVIEW
The term "patient engagement in research" refers to patients and their surrogates undertaking roles in the research process beyond those of study participants. This paper proposes a new framework for describing patient engagement in research, based on analysis of 30 publications related to patient engagement.
RECENT FINDINGS
Over the past 15 years, patients' perspectives have been instrumental in broadening the scope of rheumatology research and outcome measurement, such as evaluating fatigue in rheumatoid arthritis. Recent reviews, however, highlight low-quality reporting of patient engagement in research. Until we have more detailed information about patient engagement in rheumatology research, our understanding of how patients' perspectives are being integrated into research projects remains limited. When authors follow our guidance on the important components for describing patients' roles and function as "research partners," researchers and other knowledge users will better understand how patients' perspectives were integrated in their research projects.
摘要
综述目的
“患者参与研究”一词是指患者及其代理人在研究过程中承担超出研究参与者角色的职责。本文基于对30篇与患者参与相关出版物的分析，提出了一个描述患者参与研究的新框架。
最新发现
在过去15年中，患者的观点有助于拓宽风湿病研究和结果测量的范围，如评估类风湿关节炎中的疲劳。然而，最近的综述强调了研究中患者参与情况的低质量报告。在我们获得关于风湿病研究中患者参与的更详细信息之前，我们对患者观点如何融入研究项目的理解仍然有限。当作者遵循我们关于描述患者作为“研究伙伴”的角色和功能的重要组成部分的指导时，研究人员和其他知识使用者将更好地理解患者的观点是如何融入他们的研究项目的。
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