Partnering With Patients With Sarcoidosis to Implement a Community Advisory Board.

Autor:	Bushweller L; Cleveland Clinic Lerner College of Medicine, Cleveland, OH., Hodges S; Cleveland Clinic Sarcoidosis Center Health Partners Council-Patient Members, Cleveland, OH., Meyer L; Cleveland Clinic Sarcoidosis Center Health Partners Council-Patient Members, Cleveland, OH., Reed J; Cleveland Clinic Sarcoidosis Center Health Partners Council-Patient Members, Cleveland, OH., Saunders K; Cleveland Clinic Sarcoidosis Center Health Partners Council-Patient Members, Cleveland, OH., Jenkins R; Pulmonary Department, Cleveland Clinic, Cleveland OH., Berg KA; Center for Health Care Research & Policy, Population Health Equity Research Institute, MetroHealth Medical System, Cleveland, OH; School of Medicine, Case Western Reserve University, Cleveland OH., Thornton JD; Center for Health Equity Engagement Education and Research, the MetroHealth Campus of Case Western Reserve University, Cleveland, OH; Population Health and Equity Research Institute, the MetroHealth Campus of Case Western Reserve University, Cleveland, OH; Division of Pulmonary, Critical Care, and Sleep Medicine, The MetroHealth Campus of Case Western Reserve University, Cleveland, OH., Ribeiro Neto ML; Pulmonary Department, Cleveland Clinic, Cleveland OH., Culver DA; Pulmonary Department, Cleveland Clinic, Cleveland OH., Harper LJ; Pulmonary Department, Cleveland Clinic, Cleveland OH. Electronic address: Harperl3@ccf.org.
Jazyk:	angličtina
Zdroj:	Chest [Chest] 2024 Aug; Vol. 166 (2), pp. 343-351. Date of Electronic Publication: 2024 Feb 16.
DOI:	10.1016/j.chest.2024.02.018
Abstrakt:	Background: 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. Research Question: What are CAB members' views on the best practices for CAB formation and maintenance in a rare pulmonary disease? Study Design and Methods: 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. Results: 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. Interpretation: 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. Competing Interests: Financial/Nonfinancial Disclosures The authors have reported to CHEST the following: D. A. C. receives support from Boehringer-Ingelheim (steering committee); aTyr, AI Therapeutics, and Mallinckrodt (clinical trials); Foresee Pharmaceuticals, Molecure, and Kinevant (consulting); and Pliant and FibroGen (committee honoraria). None declared (L. B., S. H., L. M., J. R., K. S., R. J., K. A. B., J. D. T., M. L. R. N., L. J. H.). (Copyright © 2024 The Author(s). Published by Elsevier Inc. All rights reserved.)
Databáze:	MEDLINE
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