Metamedica, VU Medical Centre, Amsterdam, The Netherlands.
BMJ Open. 2013 Aug 23;3(8):e003311. doi: 10.1136/bmjopen-2013-003311.
Several studies have provided insights into the conditions for successful patient involvement in health research. We recently demonstrated that long-term engagement with people with rheumatic conditions in international outcome research led to significant changes in the research agenda in the field of rheumatology. This article explores facilitating and inhibiting factors for long-term involvement of patients as collaborative partners at five Outcome Measures in Rheumatology (OMERACT) conferences.
Responsive evaluation, starting with a thematic document analysis of conference proceedings and the grey literature, followed by 38 qualitative interviews. Interview transcripts were subjected to inductive content analysis.
5 international OMERACT conferences between 2002 and 2012.
Patient delegates (n=16) and professional delegates representing researchers (n=14), pharmaceutical industry and regulators (n=2).
Combined review of the document analysis and interview data revealed five main facilitators and three main barriers. Patient engagement as full participants at OMERACT conferences was enhanced by: strong leadership commitment and the presence of change agents, a clear selection procedure, an inclusive consensus-based conference design, individualised and self-organised support, an interactive and encouraging moderation style during discussion groups. Barriers were related to the intensity of the conference programme, scepticism among researchers and doubts about the representativeness of the patient group.
This study concludes that developing a sustainable structure for funding, selection and support of patient delegates, as well as adjusting conference design and moderation style, contributes not only towards facilitating direct dialogue between all stakeholders but also towards enhancing mutual understanding and the successful incorporation of the patient perspective in an outcome conference such as OMERACT.
多项研究深入探讨了使患者成功参与健康研究的条件。我们最近的研究表明，与风湿性疾病患者进行长期合作，参与国际结局研究，使风湿病领域的研究议程发生了重大变化。本文探讨了在五次风湿病结局研究（OMERACT）会议中，作为合作伙伴，患者长期参与的促进因素和阻碍因素。
响应性评估，首先对会议记录和灰色文献进行主题文件分析，然后进行 38 次定性访谈。对访谈记录进行归纳内容分析。
2002 年至 2012 年期间的 5 次国际 OMERACT 会议。
患者代表（n=16）和专业代表，代表研究人员（n=14）、制药行业和监管机构（n=2）。
对文件分析和访谈数据的综合审查显示了五个主要的促进因素和三个主要的障碍。患者作为 OMERACT 会议的正式参与者的参与度提高，原因包括：强有力的领导层承诺和变革推动者的存在、明确的选择程序、包容性的基于共识的会议设计、个性化和自我组织的支持、讨论小组中的互动和鼓励性的调解风格。障碍与会议计划的强度、研究人员的怀疑态度以及对患者群体代表性的疑虑有关。
本研究得出的结论是，为患者代表的资金、选择和支持制定可持续的结构，以及调整会议设计和调解风格，不仅有助于促进所有利益相关者之间的直接对话，还有助于增进相互理解，并成功地将患者视角纳入 OMERACT 等结局会议。
