Community advisory boards (CABs) are increasingly recognized as a means of incorporating patient experience into clinical practice and research. The power of CABs is derived from engaging with community members as equals throughout the research process. Despite this, little is known of community member experience and views on best practices for running a CAB in a rare pulmonary disease. What are CAB members’ views on the best practices for CAB formation and maintenance in a rare pulmonary disease? In August 2021, we formed the Cleveland Clinic Sarcoidosis Health Partners (CC-HP) as a CAB to direct research and clinic improvement initiatives at a quaternary sarcoidosis center. We collaboratively evaluated our process for formation and maintenance of the CC-HP with the patient members of the group. Through the series of reflection/debriefing discussions, CAB patient members developed a consensus account of salient obstacles and facilitators of forming and maintaining a CAB in a rare pulmonary disease. Clinician and community members of the CC-HP found published guidelines to be an effective tool for structuring formation of a CAB in a rare pulmonary disease. Facilitators included a dedicated coordinator, collaborative development of projects, and a focus on improving clinical care. Obstacles to CAB functioning were formal structure, focus on projects with academic merit but no immediate impact to patients, and overreliance on digital resources. By centering our evaluation of our CAB on community member experience, we were able to both identify facilitators and impediments to CAB as well as improve our own processes.

中文翻译：

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与结节病患者合作建立社区咨询委员会


社区咨询委员会 (CAB) 越来越被认为是将患者体验融入临床实践和研究的一种手段。 CAB 的力量源自于在整个研究过程中与社区成员平等互动。尽管如此，人们对社区成员在罕见肺部疾病中运行 CAB 的最佳实践的经验和看法知之甚少。 CAB 成员对罕见肺部疾病 CAB 形成和维持的最佳实践有何看法？ 2021 年 8 月，我们成立了克利夫兰诊所结节病健康合作伙伴 (CC-HP) 作为 CAB，指导第四纪结节病中心的研究和临床改进举措。我们与该小组的患者成员合作评估了 CC-HP 的形成和维持过程。通过一系列反思/汇报讨论，CAB 患者成员就罕见肺部疾病形成和维持 CAB 的显着障碍和促进因素达成了共识。 CC-HP 的临床医生和社区成员发现已发布的指南是在罕见肺部疾病中构建 CAB 的有效工具。协调员包括一名专门的协调员、项目的协作开发以及对改善临床护理的关注。 CAB 运作的障碍包括正式结构、专注于具有学术价值但对患者没有直接影响的项目以及对数字资源的过度依赖。通过将我们对 CAB 的评估集中在社区成员的体验上，我们能够识别 CAB 的促进因素和障碍，并改进我们自己的流程。