Strategies for Developing and Sustaining Patient and Community Advisory Groups: Lessons from the State Networks of Colorado Ambulatory Practices and Partners (SNOCAP) Consortium of Practice-Based Research Networks

Abstract

Background: Patient and community engagement is essential to maintain the relevance of practice-based research. Empowered engagement requires going beyond the check box, with advisory groups involved in every aspect of a project. Here, 4 Colorado practice-based research networks (PBRNs) share their advisory group origins, as well as methods for continued engagement and the work that has resulted.

Methods: PBRNs, like communities and practices, vary in form and function. In a 4-part case series, we describe commonalities and differences among advisory groups within the State Networks of Colorado Ambulatory Practices and Partners (SNOCAP), a consortium of PBRNs in Colorado. Three SNOCAP advisory groups are well established, while a fourth is under development.

Results: Each case shares ways in which advisory groups have been structured within SNOCAP, including meeting frequency, compensation, and member activities to ensure the design, conduct, analysis, and dissemination of research are grounded in the needs of patients and communities. We share 6 lessons learned regarding membership, relationships, relevance, care and feeding, listening, and showing up.

Conclusions: SNOCAP believes advisory groups are the backbone and guidepost of PBRN work. Patient advisors are an essential and invaluable complement to traditional research when engaged beyond "basic" participation. Best structures for advisory groups depend upon stakeholder needs.

Keywords: Colorado; Community Medicine; Community Networks; Patient Participation; Practice-based Research; Primary Health Care.