参与利益相关者并促进 OMERACT 核心结局指标集的采用。
Engaging Stakeholders and Promoting Uptake of OMERACT Core Outcome Instrument Sets.
机构信息
From the Center for Medical Technology Policy; Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland; University of Alabama at Birmingham and Birmingham Veterans Affairs Medical Center, Birmingham, Alabama; SDG LLC, Cambridge, Massachusetts; Division of Immunology/Rheumatology, Stanford University School of Medicine, Palo Alto, California, USA; Centre for Practice-Changing Research, Ottawa Hospital Research Institute; Ottawa Hospital Research Institute, Clinical Epidemiology Program; School of Epidemiology, Public Health and Preventive Medicine, Faculty of Medicine, University of Ottawa; Cardiovascular Research Methods Centre, University of Ottawa Heart Institute; Department of Epidemiology and Community Medicine, University of Ottawa; Department of Medicine, Faculty of Medicine, University of Ottawa; Cochrane Musculoskeletal, University of Ottawa, Ottawa; Musculoskeletal Health and Outcomes Research, St. Michael's Hospital; Institute for Work and Health; Department of Occupational Science and Occupational Therapy, Rehabilitation Sciences Institute and the Institute for Health Policy Management and Evaluation, University of Toronto, Toronto, Ontario, Canada; Centre for Health Policy, Melbourne School of Population and Global Health, University of Melbourne, Melbourne; Sydney Medical School, Institute of Bone and Joint Research and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, Australia; Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds and UK National Institute for Health Research (NIHR) Leeds Musculoskeletal Biomedical Research Unit, Leeds, UK; Hôpital Ambroise Paré, Rheumatology Department, Boulogne-Billancourt; INSERM U1173, Laboratoire d'Excellence INFLAMEX, UFR Simone Veil, Versailles-Saint-Quentin University, Montigny-le-Bretonneux; Sorbonne Universités, UPMC Univ Paris 06; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, Paris, France; Department of Medical Humanities, VU University Medical Centre/EMGO+ Institute, Amsterdam, the Netherlands.
IDG is a recipient of a Canadian Institutes of Health Research (CIHR) Foundation Grant Scheme (RFN #143237), focused on understanding the process and effect of integrated knowledge translation. COB has received funding from a Eugene Washington Engagement Award (EIAN 1988) from the Patient Centered Outcomes Research Institute (PCORI). All statements and views expressed in this report, including its findings and conclusions, are solely those of the authors and do not necessarily represent the views of PCORI, its board of governors, or methodology committee; or the UK National Health Service, the NIHR, or the Department of Health; or the position or policy of the US Department of Veterans Affairs or the US government. PGC is funded in part by the NIHR Leeds Musculoskeletal Biomedical Research Unit. This article presents independent research funded by the NIHR. JAS has received research grants from Takeda and Savient, and consultant fees from Takeda and the American College of Rheumatology. JAS serves as the principal investigator for an investigator-initiated study funded by Horizon pharmaceuticals through a grant to DINORA Inc., a 501 (c)(3) entity.
出版信息
J Rheumatol. 2017 Oct;44(10):1551-1559. doi: 10.3899/jrheum.161273. Epub 2017 Aug 1.
OBJECTIVE
While there has been substantial progress in the development of core outcomes sets, the degree to which these are used by researchers is variable. We convened a special workshop on knowledge translation at the Outcome Measures in Rheumatology (OMERACT) 2016 with 2 main goals. The first focused on the development of a formal knowledge translation framework and the second on promoting uptake of recommended core outcome domain and instrument sets.
METHODS
We invited all 189 OMERACT 2016 attendees to the workshop; 86 attended, representing patient research partners (n = 15), healthcare providers/clinician researchers (n = 52), industry (n = 4), regulatory agencies (n = 4), and OMERACT fellows (n = 11). Participants were given an introduction to knowledge translation and were asked to propose and discuss recommendations for the OMERACT community to (1) strengthen stakeholder involvement in the core outcome instrument set development process, and (2) promote uptake of core outcome sets with a specific focus on the potential role of post-regulatory decision makers.
RESULTS
We developed the novel "OMERACT integrated knowledge translation" framework, which formalizes OMERACT's knowledge translation strategies. We produced strategies to improve stakeholder engagement throughout the process of core outcome set development and created a list of creative and innovative ways to promote the uptake of OMERACT's core outcome sets.
CONCLUSION
The guidance provided in this paper is preliminary and is based on the views of the participants. Future work will engage OMERACT groups, "post-regulatory decision makers," and a broad range of different stakeholders to identify and evaluate the most useful methods and processes, and to revise guidance accordingly.
目的
尽管核心结局集的发展已经取得了实质性进展，但研究人员对其的使用程度存在差异。我们在 2016 年的风湿病结局测量（OMERACT）会议上举办了一个专门的知识转化研讨会，主要有两个目标。第一个重点是制定正式的知识转化框架，第二个是促进推荐的核心结局领域和工具集的采用。
方法
我们邀请了所有 189 名 OMERACT 2016 会议参加者参加研讨会；有 86 人参加，代表患者研究伙伴（n=15）、医疗保健提供者/临床研究人员（n=52）、工业界（n=4）、监管机构（n=4）和 OMERACT 研究员（n=11）。参与者接受了知识转化的介绍，并被要求提出并讨论 OMERACT 社区的建议，以（1）加强利益相关者在核心结局工具集开发过程中的参与度，（2）促进核心结局集的采用，特别关注后监管决策制定者的潜在作用。
结果
我们制定了新颖的“OMERACT 综合知识转化”框架，该框架使 OMERACT 的知识转化策略正式化。我们制定了在核心结局集开发过程中提高利益相关者参与度的策略，并列出了一系列创造性和创新性的方法来促进 OMERACT 核心结局集的采用。
结论
本文提供的指导是初步的，并且基于参与者的观点。未来的工作将使 OMERACT 团体、“后监管决策制定者”和广泛的不同利益相关者参与进来，以确定和评估最有用的方法和流程，并相应地修改指导意见。
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