Literature DB >> 31506362

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.

Mary Fisher1, Sarah E Brewer2, John M Westfall2, Matthew Simpson2, Linda Zittleman2, Sean T O'Leary2, Douglas H Fernald2, Andrea Nederveld2, Donald E Nease2.   

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. © Copyright 2019 by the American Board of Family Medicine.

Entities:  

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

Mesh:

Year:  2019        PMID: 31506362     DOI: 10.3122/jabfm.2019.05.190038

Source DB:  PubMed          Journal:  J Am Board Fam Med        ISSN: 1557-2625            Impact factor:   2.657


  4 in total

1.  Integration of stakeholder engagement from development to dissemination in genomic medicine research: Approaches and outcomes from the CSER Consortium.

Authors:  Julianne M O'Daniel; Sara Ackerman; Lauren R Desrosiers; Shannon Rego; Sara J Knight; Lonna Mollison; Grace Byfield; Katherine P Anderson; Maria I Danila; Carol R Horowitz; Galen Joseph; Grace Lamoure; Nangel M Lindberg; Carmit K McMullen; Kathleen F Mittendorf; Michelle A Ramos; Mimsie Robinson; Catherine Sillari; Ebony B Madden
Journal:  Genet Med       Date:  2022-02-25       Impact factor: 8.864

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

Authors:  Stacey A Engster; Carrie Fascetti; Alexandra Mykita; Kate Pompa; Evelyn Cohen Reis
Journal:  J Am Board Fam Med       Date:  2020 Sep-Oct       Impact factor: 2.657

3.  Engaging practices and communities in the development of interventions to promote HPV vaccine uptake: a protocol for implementing Boot Camp Translation in the private practice setting.

Authors:  Sarah E Brewer; Matthew J Simpson; John D Rice; Amanda Skenadore; Sean T O'Leary
Journal:  BMJ Open       Date:  2020-12-12       Impact factor: 2.692

4.  Patient, Public, Consumer, and Community Engagement: From Consucrat to Representative Comment on "The Rise of the Consucrat".

Authors:  Matthew DeCamp; Sarah E Brewer; Vadim Dukhanin
Journal:  Int J Health Policy Manag       Date:  2021-08-01
  4 in total

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