患者研究合作伙伴（PRP）参与OMERACT工作组的建议。OMERACT 2014年PRP工作组报告。
Recommendations for the Involvement of Patient Research Partners (PRP) in OMERACT Working Groups. A Report from the OMERACT 2014 Working Group on PRP.
作者信息
Cheung Peter P, de Wit Maarten, Bingham Clifton O, Kirwan John R, Leong Amye, March Lyn M, Montie Pam, Scholte-Voshaar Marieke, Gossec Laure
机构信息
From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology. Peter_cheung@nuhs
From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology.
出版信息
J Rheumatol. 2016 Jan;43(1):187-93. doi: 10.3899/jrheum.141011. Epub 2015 Apr 15.
OBJECTIVE
Patient participation in research is increasing; however, practical guidelines to enhance this participation are lacking. Specifically within the Outcome Measures in Rheumatology (OMERACT) organization, although patients have participated in OMERACT meetings since 2002, consensus about the procedures for involving patients in working groups has not been formalized. The objective is to develop a set of recommendations regarding patient research partner (PRP) involvement in research working groups.
METHODS
We conducted a systematic literature review on recommendations/guidelines of PRP involvement in research; elaborated a structured consensus process involving multiple participants to develop a set of recommendations; and sought endorsement of recommendations by OMERACT.
RESULTS
In the 18 articles included in the literature review, there was general agreement on the broad concepts for recommendations covering PRP involvement in research although they were heterogeneous in detail. Most considered PRP involvement in all phases of research with early engagement, training, and support important, but details on the content were scarce. This review informed a larger consensus-building process regarding PRP inclusion in OMERACT research. Three overarching principles and 8 recommendations were developed, discussed, and refined at OMERACT 2014. The guiding principles were endorsed during the OMERACT plenary session.
CONCLUSION
These recommendations for PRP involvement in OMERACT research reinforce the importance of patient participation throughout the research process as integral members. Although the applicability of the recommendations in other research contexts should be assessed, the generalizability is expected to be high. Future research should evaluate their implementation and their effect on outcome development.
目的
患者参与研究的情况日益增多；然而，目前缺乏增强这种参与度的实用指南。特别是在风湿病结局评估（OMERACT）组织内部，尽管自2002年以来患者就参与了OMERACT会议，但关于患者参与工作组的程序尚未形成正式共识。目的是制定一套关于患者研究伙伴（PRP）参与研究工作组的建议。
方法
我们对PRP参与研究的建议/指南进行了系统的文献综述；精心设计了一个由多名参与者参与的结构化共识达成过程，以制定一套建议；并寻求OMERACT对这些建议的认可。
结果
在文献综述纳入的18篇文章中，对于涵盖PRP参与研究的建议的宽泛概念存在普遍共识，尽管细节上存在差异。大多数文章认为PRP参与研究的各个阶段，早期参与、培训和支持很重要，但关于内容的细节却很少。这篇综述为OMERACT研究中纳入PRP的更大范围的共识构建过程提供了参考。在2014年OMERACT会议上制定、讨论并完善了三项总体原则和8条建议。这些指导原则在OMERACT全体会议上获得了认可。
结论
这些关于PRP参与OMERACT研究的建议强化了患者作为不可或缺的成员在整个研究过程中参与的重要性。尽管应评估这些建议在其他研究背景下的适用性，但预计其可推广性较高。未来的研究应评估它们的实施情况及其对结局指标制定的影响。
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