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 practicebased 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.

Bringing Parent Voices into a Pediatric Research Network Through a Virtual Parent Panel

“…Previous literature from pediatric PBRNs frequently involve parents participating on a Parent Advisory Board, such as the Children's Hospital of Philadelphia Pediatric Research Consortium that requires parent approval to move forward with prospective research protocols; 14 or Colorado Children's Outcomes Network Advisory Board asking parents to participate in working groups, design research projects, and develop aims for grant proposals. 13 However, these 2 models require parents to attend meetings at least quarterly or twice annually, and these PBRNs provided compensation to parents. Engaging parents longitudinally via monthly online surveys on a voluntary basis presents another strategy for community members to have a voice in child health research.…”

“…10 Therefore, most research on PBRN community engagement has focused on adults. 6,11,12 However, there are some existing models of engaging parents and community-based partners in pediatric PBRNs, including community advisory groups 13 and research advisory boards. 14 These existing models frequently include in-person meetings with a small group of community members for a set period of time with provided compensation.…”

Practice-Based Research Today: A Changing Primary Care Landscape Requires Changes in Practice-Based Research Network (PBRN) Research

“…This issue of JABFM contains 5 articles describing processes and outcomes of connecting with stakeholders. [5][6][7][8][9] The importance of building, maintaining, and, when needed, re-establishing relationships with those for who we exist-physicians, providers, office staff, patients, and in today's health care landscape, health systems, insurance companies, and government agencies, cannot be overemphasized. Luckily, this is something many PBRNs do well-As Rhyne and Fagnan 10 noted last year, "PBRNs are experts in long-term engagement strategies, relationships, and collaboration."…”

“…Colorado's statewide State Networks of Colorado Ambulatory Practices and Partners (SNOCAP) Consortium describes processes for setting research priorities via regular conferences and meetings, as well as how they developed and maintain patient and stakeholder advisory boards. 5,6…”

“…SNOCAP describes 2 impressive ongoing, multiyear processes for long-term partnerships, but they do not describe how they funded the advisory boards, conferences, and meetings. 5,6 This is important information, as a number of publications in recent years have described the dire sit-uation for PBRN infrastructure support. 10 -12 Practical details about funding can assist other PBRNs as they seek out infrastructure support, such as applying community engagement strategies to funders, 10,12 or trying to find financial stability by supporting quality improvement and practice transformation initiatives.…”