Building an Effective and Empowered Community Advisory Board for Veterans

Abstract

Although many successful Community Advisory Boards (CABs) are discussed in the literature, some articles report that community members feel they are treated as token participants, or that their voices are not heard. This article describes the initial steps we took in designing an effective and empowered CAB, the underlying group dynamics principles we employed to formulate this CAB, and the structure and processes we instituted. We focused on how to build decision-making procedures that support and enhance the group’s function and effectiveness over the long term. Additionally, we considered how we might intervene when these features become out of balance. Though the literature on CABs often talks about power dynamics, explanations of what is meant by this label are rare. We resolved to explore these dynamics and to design a CAB that would operate successfully in full recognition of power dynamics.

Operationalizing Stakeholder Engagement Through the Stakeholder-Centric Engagement Charter (SCEC)

“…Although previous literature offers lessons learned and potential guidelines for engagement, there is a need for peerreviewed evidence that builds on this foundational work to provide actionable and specific strategies for operationalizing researcher-stakeholder partnerships. 1,3,5,11,16,22 Given the diversity of stakeholders' perspectives, experiences, familiarity with research, and trust in healthcare, it is especially important that investigators understand best practices for leading and fostering stakeholder engagement that is equitable, sustainable, and transparent. Furthermore, such research should readily share power with non-researchers and historically underrepresented individuals within the research enterprise.…”

“…23 In addition, areas for further investigation include stakeholder implementation of governance guidelines like the SCEC, strategies for enhancing shared governance in research, accessibility of documents to non-researchers, evaluation of engagement approaches, and additional ways to collaborate among a range of stakeholders to advance the science of stakeholder engagement. 3,11,16,23 Corresponding Author: Jenny Martínez, OTD; Department of Occupational Therapy, Jefferson College of Rehabilitation Sciences, Thomas Jefferson University, Philadelphia, PA, USA (e-mail: jenny. martinez@jefferson.edu).…”

“…2,8,9 Stakeholder roles and responsibilities vary in complexity and depth across studies, ranging from information exchange to consultation or shared decisionmaking. 1,2,7,10,11 Studies evaluating the implementation of governance structures from stakeholders' perspectives report (a) restricted power to influence the research agenda, (b) minimal comprehension about the study, (c) disempowered relationships with researchers, (d) insufficient or absent incentives for participation given competing demands on stakeholder time, and (e) inadequate guidelines for governance, collaboration, or decision-making. 1,7,[10][11][12] Thus, there is an urgent need for research governance structures that foster meaningful stakeholder engagement.…”

“…15 Further, recent research offers information about emerging engagement challenges, potential strategies to address such challenges, and lessons learned-yet there is still a need for s pe c i f i c m et ho d s an d p r o c ed u r e s f o r e n ga g i n g stakeholders. 3,11,12,16,17 To address this gap, we describe our process for collaborating with our stakeholder advisory committee to develop a study charter, which we call Stakeholder-Centric Engagement Charter (SCEC). The SCEC operationalized engagement within a PCORI-funded large pragmatic trial (ClinicalTrials.…”

The Importance of the Veteran’s Voice: Three Veterans Recount Their Engagement with VA Research

“…1 In a prior publication, we describe Veteran engagement at the VA Center for Health Equity Research and Promotion (CHERP) in detail, including nuances and subtleties of the relationship. 2 To summarize, the Veterans Community Advisory Board (VCAB), an independent, active and empowered Board within a federal agency, advocates for the Veteran perspective in VA research. 1,3 The members personify the vulnerable communities at the heart of CHERP's health equity research mission: e.g., Veterans with stigmatizing mental, social, and health conditions (i.e., addiction, homelessness, HIV+, etc.…”