Framework for Advancing the Reporting of Patient Engagement in Rheumatology Research Projects

被引:28
|
作者
Hamilton, Clayon B. [1 ,2 ]
Leese, Jenny C. [1 ,2 ]
Hoens, Alison M. [3 ,4 ]
Li, Linda C. [1 ,2 ,3 ]
机构
[1] Univ British Columbia, Dept Phys Therapy, Vancouver, BC, Canada
[2] Arthrit Res Canada, 5591 3 Rd, Richmond, BC V6X 2C7, Canada
[3] BC SUPPORT Unit, Vancouver, BC, Canada
[4] Arthrit Res Canada, Arthrit Patient Advisory Board, Richmond, BC, Canada
关键词
Patient engagement in research; Patient participation; Patient involvement; Patient research partners; PUBLIC INVOLVEMENT; RESEARCH PARTNERS; PARTICIPATION; CHALLENGES; OMERACT; HEALTH; RECOMMENDATIONS; ARTHRITIS; SERVICES; OUTCOMES;
D O I
10.1007/s11926-017-0666-4
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
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. Summary 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.
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页数:10
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