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Current Rheumatology Reports
Published in: Current Rheumatology Reports 7/2017

01-07-2017 | Health Economics and Quality of Life (N Tsao, Section Editor)

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

Authors: Clayon B. Hamilton, Jenny C. Leese, Alison M. Hoens, Linda C. Li

Published in: Current Rheumatology Reports | Issue 7/2017

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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.

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.
Appendix
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Metadata
Title
Framework for Advancing the Reporting of Patient Engagement in Rheumatology Research Projects
Authors
Clayon B. Hamilton
Jenny C. Leese
Alison M. Hoens
Linda C. Li
Publication date
01-07-2017
Publisher
Springer US
Published in
Current Rheumatology Reports / Issue 7/2017
Print ISSN: 1523-3774
Electronic ISSN: 1534-6307
DOI
https://doi.org/10.1007/s11926-017-0666-4

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