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

Area of Science:

• Patient-centered research
• Rare pulmonary diseases
• Community engagement

Background:

• Community advisory boards (CABs) integrate patient experiences into clinical research.
• Effective CABs engage community members as equal partners.
• Limited understanding of patient perspectives on CAB best practices in rare pulmonary diseases.

Purpose of the Study:

• To explore CAB members' views on best practices for forming and maintaining CABs in rare pulmonary diseases.

Main Methods:

• Formation of the Cleveland Clinic Sarcoidosis Health Partners (CC-HP) CAB in August 2021.
• Collaborative evaluation of CAB formation and maintenance processes with patient members.
• Consensus development of obstacles and facilitators through reflection/debriefing discussions.

Main Results:

• Published guidelines aided CAB formation in rare pulmonary diseases.
• Facilitators included a dedicated coordinator, collaborative projects, and focus on clinical care improvement.
• Obstacles involved formal structure, academic focus over patient impact, and excessive digital resource use.

Conclusions:

• Centering CAB evaluations on community member experiences identifies facilitators and impediments.
• This approach enhances CAB processes for rare pulmonary diseases.
• Patient input is crucial for effective clinical practice and research improvement.