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

  • Health Economics and Quality of Life (N Tsao, Section Editor)
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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.

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Papers of particular interest, published recently, have been highlighted as: • Of importance •• Of major importance

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Acknowledgments

CBH is supported by a postdoctoral fellowship from the Michael Smith Foundation for Health Research. We thank Bao Chau Tran for her assistance with the literature search.

Author information

Authors and Affiliations

  1. Department of Physical Therapy, University of British Columbia, Vancouver, BC, Canada

    Clayon B. Hamilton, Jenny C. Leese & Linda C. Li

  2. Arthritis Research Canada, 5591 No. 3 Road, Richmond, BC, V6X 2C7, Canada

    Clayon B. Hamilton, Jenny C. Leese & Linda C. Li

  3. BC SUPPORT Unit, Vancouver, BC, Canada

    Alison M. Hoens & Linda C. Li

  4. Arthritis Patient Advisory Board of Arthritis Research Canada, Richmond, BC, Canada

    Alison M. Hoens

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  1. Clayon B. Hamilton
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  2. Jenny C. Leese
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  4. Linda C. Li
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Correspondence to Linda C. Li.

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Hamilton, C.B., Leese, J.C., Hoens, A.M. et al. Framework for Advancing the Reporting of Patient Engagement in Rheumatology Research Projects. Curr Rheumatol Rep 19, 38 (2017). https://doi.org/10.1007/s11926-017-0666-4

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