Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences
Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences
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DOI：
10.1136/bmjopen-2012-002241
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发表时间：
2013-01-01
期刊：
影响因子：
2.9
通讯作者：
Kirwan, John
中科院分区：
文献类型：
--
作者：
de Wit, Maarten;Abma, Tineke;Kirwan, John
目的：为了评估纳入患者作为国际研究合作伙伴的成果措施在流变学（OMERACT）会议，以及如何这已经影响了范围和进行成果研究在rheology.Design：一个主题内容分析的OMERACT内部文件，出版物和会议记录，其次是一个响应性的评价，包括32定性半结构化访谈。一年两次的国际研究会议OMERACT 10（马来西亚，2010年）。高级研究人员（n= 10）、初级研究人员（n= 2）、制药行业和监管机构代表（n= 2）、会议工作人员（n= 2），结果：10年来，患者的角色从一个单一的患者焦点小组发展到全面参与会议的各个领域，并在会议期间参加研究小组会议。出现了五个主要类别的影响：扩大研究议程;包括患者相关的结果在核心集;加强患者报告的工具;改变OMERACT的文化和OMERACT以外的后果。患者参与者确定了以前被忽视的结果领域，如疲劳，睡眠障碍和耀斑，这促使了新的研究计划的合作工作。确定了具体的好处和挑战，为患者和专业人士，如个人的成就感，扩大研究兴趣，在建立平等的伙伴关系和关注损失的研究rigur.Conclusions困难：包括患者作为合作伙伴在OMERACT会议扩大了其重点和调整的工作方式。它导致了研究议程的新发展，并在临床试验中使用更多与患者相关的结果。这些合作影响了许多患者和研究人员的看法和信念，并导致更广泛的患者参与研究。
Objective: To assess the inclusion of patients as international research partners in Outcome Measures in Rheumatology (OMERACT) conferences and how this has influenced the scope and conduct of outcomes research in rheumatology.Design: A thematic content analysis of OMERACT internal documents, publications and conference proceedings, followed by a responsive evaluation including 32 qualitative semistructured interviews.Setting: The international, biannual research conference OMERACT 10 (Malaysia, 2010).Participants: Senior researchers (n= 10), junior researchers (n= 2), representatives of the pharmaceutical industry and regulators (n= 2), conference staff (n= 2), new patient delegates (n= 8) and experienced patient delegates (n= 8).Results: The role of patients evolved over 10 years from a single patient focus group to full participation in all areas of the meeting and inclusion in research group meetings between conferences. Five main categories of impact emerged: widening the research agenda; including patient relevant outcomes in core sets; enhancing patient reported instruments; changing the culture of OMERACT and consequences outside OMERACT. Patient participants identified previously neglected outcome domains such as fatigue, sleep disturbances and flares which prompted collaborative working on new programmes of research. Specific benefits and challenges for patients and professionals were identified, such as personal fulfilment, widening of research interests, difficulties in establishing equal partnerships and concerns about loss of research rigour.Conclusions: Including patients as partners in OMERACT conferences has widened its focus and adjusted the way of working. It has resulted in new developments in the research agenda and the use of more patient-relevant outcomes in clinical trials. These collaborations have influenced perceptions and beliefs among many patients and researchers, and led to wider patient involvement as partners in research.