• Leila Bushweller, Sandra Hodges, Linda Meyer, Johnie Reed, Karen Saunders, Rhonda Jenkins, Kristen A Berg, J Daryl Thornton, Manuel L Ribeiro Neto, Daniel A Culver, and Logan J Harper.
• Cleveland Clinic Lerner College of Medicine, Cleveland, OH.
• Chest. 2024 Aug 1; 166 (2): 343351343-351.

BackgroundCommunity 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.Research QuestionWhat are CAB members' views on the best practices for CAB formation and maintenance in a rare pulmonary disease?Study Design And MethodsIn 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.ResultsClinician 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.InterpretationBy 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.Copyright © 2024 The Author(s). Published by Elsevier Inc. All rights reserved.

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