Jinks Clare, Ong Bie Nio, O'Neill Tracey J
Arthritis Research Campaign National Primary Care Centre, Keele University Keele, UK.
BMC Musculoskelet Disord. 2009 Jul 15;10:85. doi: 10.1186/1471-2474-10-85.
Involvement of users in health care research is central to UK health care policy, and guidelines for involvement exist. However, there are limited examples in rheumatology research. The aim of this study was to establish a community knee pain forum aimed at engaging stakeholders in design, dissemination and prioritisation of knee pain research.
Ten people were recruited to the forum representing a wide range of agencies. These included Weight Watchers, the leisure industry, Beth Johnson Foundation, health and social care professionals and the public. Three two-hour meetings over a two-year period were held. Experienced qualitative researchers facilitated each meeting. Written feedback after each meeting was elicited, and a short evaluation form was mailed to all members after the final meeting.
Establishing and maintaining a forum of mixed members required careful preparation and ongoing support. Meetings had to be well-structured in order to allow for balanced participation of lay and professional users. Users contributed to the design of methods, provided ideas for dissemination and set priorities for further research. Clear documentation of meetings ensured that users' contributions to the research cycle were transparent.
Our knee pain forum illustrates that community engagement can have a positive impact on the development, dissemination and implementation of health research. Engaging with non-academic partners enables mutual learning and this enhances the quality of NHS research.
让用户参与医疗保健研究是英国医疗保健政策的核心，并且存在相关参与指南。然而，在风湿病学研究中此类例子有限。本研究的目的是建立一个社区膝关节疼痛论坛，旨在让利益相关者参与膝关节疼痛研究的设计、传播和优先级确定。
招募了10人加入该论坛，他们代表了广泛的机构。这些机构包括慧俪轻体、休闲产业、贝丝·约翰逊基金会、卫生和社会护理专业人员以及公众。在两年时间内举行了三次两小时的会议。经验丰富的定性研究人员主持每次会议。每次会议后都收集书面反馈，并在最后一次会议后向所有成员邮寄一份简短的评估表。
建立并维持一个成员构成多样的论坛需要精心准备和持续支持。会议必须精心组织，以便让普通用户和专业用户都能均衡参与。用户参与了研究方法的设计，提供了传播思路，并确定了进一步研究的优先级。会议的清晰记录确保了用户对研究周期的贡献是透明的。
我们的膝关节疼痛论坛表明，社区参与能够对健康研究的开展、传播和实施产生积极影响。与非学术伙伴合作能够实现相互学习，进而提高国民保健服务研究的质量。
