PRINCIPLES OF

COMMUNITY ENGAGEMENT

SECOND EDITION

Clinical and Translational Science Awards Consortium

Community Engagement Key Function Committee Task

Force on the Principles of Community Engagement
NIH Publication No. 11-7782

Printed June 2011

PRINCIPLES OF

COMMUNITY ENGAGEMENT

SECOND EDITION

Clinical and Translational Science Awards Consortium

Community Engagement Key Function Committee Task

Force on the Principles of Community Engagement
iii

TABLE OF CONTENTS

CTSA Community Engagement Key Function Committee

Task Force on the Principles of Community Engagement (Second Edition)                     iv

Publication Development vi

Foreword                                                                     ix

Executive Summary                                                            xiii

Chapter 1: C ommunity Engagement: Definitions and Organizing

Concepts from the Literature                                               1

Chapter 2: Principles of Community Engagement 43

Chapter 3: Successful Examples in the Field                                           55

Chapter 4: Managing Organizational Support for Community Engagement 91

Chapter 5: Challenges in Improving Community Engagement in Research                    107

Chapter 6: The Value of Social Networking in Community Engagement                     149

Chapter 7: Program Evaluation and Evaluating Community Engagement                     161

Chapter 8: Summary                                                           183

Appendix A: Acronyms                                                         
iv

CTSA Community Engagement Key Function Committee Task Force on the 

Principles of Community Engagement (Second Edition)

Donna Jo McCloskey, RN, PhD, National Center for Research 

Resources, NIH (Chair)

Sergio Aguilar-Gaxiola, MD, PhD, University of California, Davis (Co-Chair)

J Lloyd Michener, MD, Duke University (Co-Chair)

Tabia Henry Akintobi, PhD, MPH, Morehouse School of Medicine

Ann Bonham, PhD, Association of American Medical Colleges

Jennifer Cook, MPH, Duke University

Tamera Coyne-Beasley, MD, MPH, University of North Carolina 

at Chapel Hill

Ann Dozier, PhD, University of Rochester School of Medicine and Dentistry

Robert Duffy, MPH, University of California, Davis

Milton (Mickey) Eder, PhD, University of Chicago, Access Community 

Health Network

Paul Fishman, PhD, University of Washington

Jo Anne Grunbaum, EdD, Centers for Disease Control and Prevention

Sheila Gutter, PhD, Weill Cornell Medical College

Karen Hacker, MD, MPH, Harvard University

Michael Hatcher, DrPH, Agency for Toxic Substances and Disease Registry

Suzanne Heurtin-Roberts, PhD, MSW, National Cancer Institute, NIH

Mark Hornbrook, MD, Kaiser Permanente Center for Health Research

Shantrice Jones, MPH, Centers for Disease Control and Prevention

Michelle Lyn, MBA, MHA, Duke University

Mary Anne McDonald, DrPH, MA, Duke University

David Meyers, MD, Agency for Healthcare Research and Quality

Barbara Moquin, PhD, APRN, National Center for Complementary 

and Alternative Medicine, NIH

Patricia Mullan, PhD, University of Michigan

Nancy Murray, DrPH, MA, University of Texas Health Science Center 

at Houston

Ruby Neville, MSW, Substance Abuse and Mental Health 

Services Administration

Cheryl Perry, PhD, University of Alabama at Birmingham

Dana Sampson, MS, MBA, Office of Behavioral and Social Sciences 

Research, NIH

Mina Silberberg, PhD, Duke University

Meryl Sufian, PhD, National Center for Research Resources, NIH

Stephen Updegrove, MD, MPH, Yale University

David Warner, MD, Mayo Clinic

Charlene Raye Weir, RN, PhD, University of Utah

Sharrice White-Cooper, MPH, Centers for Disease Control and Prevention
v

Editorial and Research Staff

Mina Silberberg, PhD, Duke University (Chair)

Jennifer Cook, MPH, Duke University

Cheryl Drescher, BEd, Duke University

Donna Jo McCloskey, RN, PhD, National Center for Research 

Resources, NIH

Sarah Weaver, MPH, Duke University

Linda Ziegahn, PhD, University of California, Davis

External Reviewers

Barbara Alving, MD, FCCP, National Center for Research Resources, NIH

Ahmed Calvo, MD, MPH, Health Resources and Services Administration

Teresa Cullen, MD, MS, Indian Health Service

William Elwood, PhD, Office of Behavioral and Social Sciences 

Research, NIH

Carol Ferrans, PhD, RN, FAAN, University of Illinois at Chicago

Sarah Greene, MPH, University of Washington

Thelma Hurd, MD, University of Texas Health Science Center 

at San Antonio

Laurel Leslie, MD, MPH, Tufts University

Leandris Liburd, MPH, PhD, Centers for Disease Control and Prevention

Doriane Miller, MD, University of Chicago

Meredith Minkler, DrPH, University of California, Berkeley

Jim Mold, MD, University of Oklahoma

Sylvia L. Parsons, National Center for Research Resources, NIH

Valerie Robison, DDS, MPH, PhD, Centers for Disease Control 

and Prevention

Eduardo Simoes, MD, MSc, MPH, Centers for Disease Control 

and Prevention

Bernard Talbot, MD, PhD, National Center for Research Resources, NIH

Nina Wallerstein, DrPH, University of New Mexico

Anne Willoughby, MD, MPH, National Center for Research Resources, NIH
vi

PUBLICATION DEVELOPMENT

This publication was developed as part of the work of the Clinical and 

Translational Science Awards (CTSA) Consortium’s Community Engagement 

Key Function Committee Recognizing that community involvement is essential to the identification of health concerns and interventions, the Committee 

created a task force on updating the 1997 publication Principles of Community 

Engagement, published by the Centers for Disease Control and Prevention and 

the Agency for Toxic Substances and Disease Registry This project has been 

funded in whole with federal funds from the National Center for Research 

Resources, National Institutes of Health, through the CTSA program, part of 

the Roadmap Initiative, Re-Engineering the Clinical Research Enterprise The 

manuscript was approved by the CTSA Consortium Publications Committee 

Publication development was a collaborative effort of the CTSA Community 

Engagement Key Function Committee, which included members from the 

National Institutes of Health, Agency for Toxic Substances and Disease Registry, 

and Centers for Disease Control and Prevention This publication is in the 

public domain and may be reprinted or copied without permission

About the Developers

The National Institutes of Health is a part of the US Department of Health 

and Human Services Its mission is making important medical discoveries 

that improve health and save lives (wwwnihgov)

The Centers for Disease Control and Prevention is a part of the US Department 

of Health and Human Services and is the nation’s prevention agency Its mission is to promote health and quality of life by preventing and controlling 

disease, injury, and disability (wwwcdcgov)

The Agency for Toxic Substances and Disease Registry is a part of the US 

Department of Health and Human Services and is a federal public health 

agency Its mission is to prevent exposure and adverse human health effects 

and diminished quality of life associated with exposure to hazardous substances from waste sites, unplanned releases, and other sources of pollution 

present in the environment (wwwatsdrcdcgov)
vii

For further information on the CTSA Consortium and the Community 

Engagement Key Function Committee, please visit wwwctsaweborg

The findings and conclusions in this report are those of the authors and do not 

necessarily represent the official position of the Centers for Disease Control 

and Prevention, the Agency for Toxic Substances and Disease Registry, or the 

National Institutes of Health

Editorial support was provided under the American Recovery and Reinvestment 

Act supplemental funding to the Duke CTSA, grant number UL1RR024128, 

and by Palladian Partners, Inc, contract number 3035468
Foreword
xi

FOREWORD

As Surgeon General, I am privileged to serve as “America’s Doctor,” overseeing the operations of the US Public Health Service and providing Americans 

with the best scientific information available on how to improve their health 

and reduce the risk of illness and injury

In this capacity, and from my many years of family practice, I am convinced 

that Americans need to live and work in environments where they can practice 

healthy behaviors and obtain quality medical care Social, cultural, physical, 

and economic foundations are important factors in the overall health of the 

community We must use our resources to increase availability of healthy 

foods, ensure that neighborhoods have safe places for physical activity, and 

provide access to affordable, high-quality medical services

Creating these healthy environments for people of all ages will require their 

active involvement in grassroots efforts Private citizens, community leaders, 

health professionals, and researchers will need to work together to make the 

changes that will allow such environments to flourish

Across the United States, coalitions are working together to create change, 

and we are already seeing results The most effective collaborations include 

representation from various sectors—businesses, clinicians, schools, academia, 

government, and the faith-based community

This work is not easy, but it is essential When Principles of Community 

Engagement was first published in 1997, it filled an important vacuum, providing community members, health professionals, and researchers with clear 

principles to guide and assess their collaborative efforts The need for such 

guidance has not lessened in the subsequent years Our health challenges 

continue Support for collaborative work has grown, but with this growing 

support has come an increasing volume and diversity of initiatives, terminology, approaches, and literature

This new edition of Principles adheres to the same key principles laid out in 

the original booklet It distills critical messages from the growing body of 

information and commentary on this topic At the same time, it provides more 
xii

detailed practical information about the application of the principles, and it 

responds to changes in our larger social context, including the increasing use 

of “virtual communities” and the growing interest in community-engaged 

health research

As we continue to try to improve our nation’s health, we must work together 

and keep in mind the community contexts that shape our health and well-being

This is the charge and the challenge laid out in these pages

Regina M Benjamin, MD, MBA

Vice Admiral, US Public Health Service

Surgeon General
Executive Summary
xv

EXECUTIVE SUMMARY

Involving the community and collaborating with its members are cornerstones 

of efforts to improve public health In recent years, for example, community 

engagement and mobilization have been essential to programs addressing 

smoking cessation, obesity, cancer, heart disease, and other health concerns 

(Ahmed et al, 2010; Minkler et al, 2008) In October 1995, recognizing the 

importance of involving the community, the Centers for Disease Control and 

Prevention (CDC) established the Committee for Community Engagement, 

which was composed of representatives from across CDC and the Agency for 

Toxic Substances and Disease Registry (ATSDR) Two years later, that committee developed the booklet Principles of Community Engagement, which 

was published by CDC and ATSDR Principles defined community engagement as “the process of working collaboratively with groups of people who 

are affiliated by geographic proximity, special interests, or similar situations 

with respect to issues affecting their well-being” (CDC, 1997, p 9) We will 

refer to this second edition as a primer rather than a booklet because of its 

expanded size and scope

The challenges faced by the health system in 1997 are not so different from 

those of today, but the scope, scale, and urgency of these problems have all 

sharply increased In 1997, the newly enacted Children’s Health Insurance 

Program expanded access to health care for millions of children; today the 

newly enacted Patient Protection and Affordable Care Act expands access 

to tens of millions of people of all ages In 1997, obesity rates had reached 

20–24% in three states; today, nine states have obesity rates over 30% (CDC, 

2010), and the US faces unprecedented increases in the prevalence of chronic 

diseases, such as diabetes, hypertension, and cardiovascular disorders (CDC, 

2009) Not surprisingly, community engagement is increasingly recognized as 

a vital component of efforts to expand access to quality care, prevent disease, 

and achieve health equity for all Americans

Although the principles of community engagement laid out in 1997 have not 

changed, the body of knowledge supporting them has grown, and more agencies and organizations are involved in promoting community engagement and 

community-engaged research CDC is now joined by the National Institutes of 

Health, the Health Resources and Services Administration, the US Department 
xvi

of Veterans Affairs, and other federal agencies, academic institutions, and 

community partners in advancing knowledge about community engagement 

and in promoting its use to solve some of our more challenging problems

Principles of Community Engagement (Second Edition) provides public health 

professionals, health care providers, researchers, and community-based leaders 

and organizations with both a science base and practical guidance for engaging 

partners in projects that may affect them The principles of engagement can 

be used by people in a range of roles, from the program funder who needs to 

know how to support community engagement to the researcher or community 

leader who needs hands-on, practical information on how to mobilize the 

members of a community to partner in research initiatives In addition, this 

primer provides tools for those who are leading efforts to improve population 

health through community engagement

In the context of engagement, “community” has been understood in two 

ways It is sometimes used to refer to those who are affected by the health 

issues being addressed This use recognizes that the community as defined 

in this way has historically been left out of health improvement efforts even 

though it is supposed to be the beneficiary of those efforts On the other 

hand, “community” can be used in a more general way, illustrated by referring to stakeholders such as academics, public health professionals, and 

policy makers as communities This use has the advantage of recognizing 

that every group has its own particular culture and norms and that anyone 

can take the lead in engagement efforts In this second edition of Principles 

of Community Engagement, we recognize the need for particular attention to 

engagement of communities affected by health issues We also promote the 

idea that engagement for health improvement can be initiated and led by the 

“lay” community rather than professional groups Regardless, we recognize 

that the groups involved in community engagement have their own particular 

norms and that all partners in a collaboration will have lessons to learn about 

each other and the collaborative process Moreover, we fully appreciate that all 

who are involved in engaging a community must be responsive to the needs 

of that community as defined by the community itself

In practice, community engagement is a blend of science and art The science 

comes from sociology, political science, cultural anthropology, organizational 

development, psychology, social work, and other disciplines, and organizing 

concepts are drawn from the literature on community participation, community 
xvii

mobilization, constituency building, community psychology, and cultural 

influences The art comes from the understanding, skill, and sensitivity used 

to apply and adapt the science in ways that fit the community of interest and 

the purposes of specific engagement efforts The results of these efforts may 

be defined differently and can encompass a broad range of structures (eg, 

coalitions, partnerships, collaborations), but they all fall under the general 

rubric of community engagement and are treated similarly in this primer

This primer can serve as a guide for understanding the principles of community engagement for those who are developing or implementing a community 

engagement plan, or it can be a resource for students or faculty Community 

processes can be complex and labor-intensive, and they require dedicated 

resources such as time, funding, and people with the necessary skills Leaders 

everywhere are struggling with how to make the right choices as they try to 

improve health care services and promote individual and population health 

Readers of this primer may find that a fuller understanding of community 

engagement will facilitate and promote its use and thus advance the health 

of all of our communities

ORGANIZATION OF THE PRINCIPLES OF COMMUNITY ENGAGEMENT

The first of this primer’s eight chapters reviews organizing concepts, models, 

and frameworks from the literature, and the second chapter introduces the 

principles of community engagement, which are rooted in that literature As 

in the first edition, one chapter contains a series of community case examples 

(Chapter 3) taken from the literature on community engagement that link to 

the principles described in Chapter 2 Chapter 4 describes how to manage 

organizational support for community engagement; this chapter reflects our 

growing awareness of the challenges of putting community engagement into 

practice Chapter 5 addresses the increased interest in community-engaged 

research, and Chapter 6 deals with the rapidly changing world of social 

networking Chapter 7 deals with evaluation, and Chapter 8 offers a brief 

summary and closing remarks

This primer was written as an integrated whole, with later chapters building 

on those that come before Even so, the chapters can also stand alone and 

be used as needed This is by intention, as we wish to meet the needs of our 

diverse audiences We hope that whoever uses Principles (Second Edition) 

finds it helpful in assisting their efforts to engage communities
xviii

REFERENCES

Ahmed SM, Palermo AG Community engagement in research: frameworks for education and peer review American Journal of Public Health 

2010;100(8):1380-1387

Centers for Disease Control and Prevention Chronic diseases. The power to 

prevent, the call to control: at a glance 2009. Atlanta (GA): Centers for Disease 

Control and Prevention; 2009 Retrieved from http://wwwcdcgov/chronicdisease/resources/publications/AAG/pdf/chronicpdf

Centers for Disease Control and Prevention Obesity trends among U.S. 

adults between 1985 and 2009. Atlanta (GA): Centers for Disease Control and 

Prevention; 2010 Retrieved from http://wwwcdcgov/obesity/downloads/

obesity_trends_2009pdf

Centers for Disease Control and Prevention Principles of community 

engagement (1st ed) Atlanta (GA): CDC/ATSDR Committee on Community 

Engagement; 1997

Minkler M, Wallerstein N The growing support for CBPR In: Minkler M, 

Wallerstein N (editors) Community-based participatory research for health: 

from process to outcomes (2nd ed, p 544) San Francisco: Jossey-Bass; 2008
Community Engagement:

Definitions and Organizing Concepts from the Literature
3

Chapter 1

Community Engagement:

Definitions and Organizing Concepts from the Literature

Donna Jo McCloskey, RN, PhD, (Chair), Mary Anne McDonald, DrPH, MA, Jennifer Cook, 

MPH, Suzanne Heurtin-Roberts, PhD, MSW, Stephen Updegrove, MD, MPH, Dana Sampson, 

MS, MBA, Sheila Gutter, PhD, Milton (Mickey) Eder, PhD

INTRODUCTION

Over the last two decades, research and practice in health promotion have 

increasingly employed community engagement, defined as “the process of 

working collaboratively with and through groups of people affiliated by 

geographic proximity, special interest, or similar situations to address issues 

affecting the well-being of those people” (Centers for Disease Control and 

Prevention [CDC], 1997, p 9) In general, the goals of community engagement 

are to build trust, enlist new resources and allies, create better communication, and improve overall health outcomes as successful projects evolve into 

lasting collaborations (CDC, 1997; Shore, 2006; Wallerstein, 2002)

The rationale for community-engaged health promotion, policy making, 

and research is largely rooted in the recognition that lifestyles, behaviors, 

and the incidence of illness are all shaped by social and physical environments (Hanson, 1988; Institute of Medicine, 1988) This “ecological” view 

is consistent with the idea that health inequalities have their roots in larger 
4

socioeconomic conditions (Iton, 2009) If health is socially determined, 

then health issues are best addressed by engaging community partners 

who can bring their own perspectives and understandings of community 

life and health issues to a project And if health inequalities are rooted in 

larger socioeconomic inequalities, then approaches to health improvement 

must take into account the concerns of communities and be able to benefit 

diverse populations

The growing commitment to community engagement is reflected in a number of major federal initiatives, including the Clinical and Translational 

Science Awards (CTSA) program and the Research Centers in Minority 

Institutions program of the National Institutes of Health (NIH), CDC’s 

Prevention Research Centers, and the practice-based research networks of 

the Agency for Healthcare Research and Quality (AHRQ) In addition, new 

work by AHRQ highlights the potential benefits of engaging patients and 

families in the redesign of medical care (Scholle et al, 2010) Healthy People 

2020, which lays out our national health objectives, emphasizes collaboration among diverse groups as a strategy to improve health

This emphasis on community engagement has encouraged health professionals, community leaders, and policy makers to imagine new opportunities as 

they face new challenges (Doll et al, 2008) This initial chapter addresses 

concepts, models, and frameworks that can be used to guide and inspire 

efforts to meet those challenges It does not pretend to cover all 

the available and relevant social science and public health literature, but it provides an overview of some of the critical organizing 

concepts that shed light on the idea of community and the practice 

of community engagement Sociology, political science, cultural 

anthropology, organizational development, psychology, social 

work, and other disciplines have all contributed to the development and practice of community engagement (Minkler et al, 2009) 

Moreover, community engagement is grounded in the principles 

of community organization: fairness, justice, empowerment, participation, and self-determination (Alinsky, 1962; Chávez et al, 

2007; Freire, 1970; Wallerstein et al, 2006) The interdisciplinary 

background offered in this chapter provides a rich array of concepts for 

stakeholders, such as public health agencies, practice-based researchers (in 

Moreover, community 

engagement is grounded in 

the principles of community 

organization: fairness, justice, 

empowerment, participation, and 

self-determination...
5

clinics, agencies, after-school programs, and nursing homes), policy makers, 

and community organizations, to draw from when developing partnerships 

in community engagement

This chapter is more extensive than the corresponding chapter in the first 

edition, reflecting growth in the literature and the increased collective 

experience in community engagement

CONCEPTS OF COMMUNITY

There are many ways to think about community We will explore four of the 

most relevant, each of which provides different insights into the process of 

community engagement

Systems Perspective

From a systems perspective, a community is similar to a living creature, 

comprising different parts that represent specialized functions, activities, or 

interests, each operating within specific boundaries to meet community needs 

For example, schools focus on education, the transportation sector focuses 

on moving people and products, economic entities focus on enterprise and 

employment, faith organizations focus on the spiritual and physical well-being 

of people, and health care agencies focus on the prevention and treatment 

of diseases and injuries (Henry, 2011) For the community to function well, 

each part has to effectively carry out its role in relation to the whole organism. A healthy community has well-connected, interdependent sectors that 

share responsibility for recognizing and resolving problems and enhancing 

its well-being Successfully addressing a community’s complex problems 

requires integration, collaboration, and coordination of resources from all 

parts (Thompson et al, 1990) From a systems perspective, then, collaboration is a logical approach to health improvement

Social Perspective

A community can also be defined by describing the social and political networks 

that link individuals, community organizations, and leaders Understanding 

these networks is critical to planning efforts in engagement For example, 
6

tracing social ties among individuals may help engagement leaders to identify a community’s leadership, understand its behavior patterns, identify its 

high-risk groups, and strengthen its networks (Minkler et al, 1997) Chapter 

6 explores this approach to understanding a community in greater depth

Virtual Perspective

Some communities map onto geographically defined areas, but today, individuals rely more and more on computer-mediated communications to access 

information, meet people, and make decisions that affect their lives (Kozinets, 

2002) Examples of computer-mediated forms of communication include email, 

instant or text messaging, e-chat rooms, and social networking sites such 

as Facebook, YouTube, and Twitter (Flavian et al, 2005) Social groups or 

groups with a common interest that interact in an organized fashion on the 

Internet are considered “virtual communities” (Rheingold, 2000; Ridings et 

al, 2002) Without question, these virtual communities are potential partners 

for community-engaged health promotion and research Chapter 6 focuses on 

social networking and expands on the virtual perspective

Individual Perspective

Individuals have their own sense of community membership that is beyond 

the definitions of community applied by researchers and engagement leaders 

Moreover, they may have a sense of belonging to more than one community 

In addition, their sense of membership can change over time and may affect 

their participation in community activities (Minkler et al, 2004)

The philosopher and psychologist William James shed light on this issue in his 

writings James thought it important to consider two perspectives on identity: 

the “I,” or how a person thinks about himself or herself, and the “me,” or how 

others see and think about that person Sometimes these two views agree 

and result in a shared sense of an identity, but other times they do not People 

should not make assumptions about identity based on appearance, language, 

or cultural origin; nor should they make assumptions about an individual’s 

perspective based on his or her identity (James, 1890) Today, the multiple 

communities that might be relevant for any individual — including families, 

workplace, and social, religious, and political associations — suggest that 

individuals are thinking about themselves in more complex ways than was 

the norm in years past
7

The eligibility criteria that scientists, policy makers, and others develop for 

social programs and research projects reflect one way that people perceive 

a group of proposed participants, but how much those criteria reflect the 

participants’ actual view of themselves is uncertain Practitioners of community engagement need to learn how individuals understand their identity 

and connections, enter into relationships, and form communities

WHAT IS COMMUNITY ENGAGEMENT?

In the first edition of Principles, the authors developed a working definition 

of community engagement that captures its key features:

...the process of working collaboratively with and through groups of 

people affiliated by geographic proximity, special interest, or similar 

situations to address issues affecting the well-being of those people It 

is a powerful vehicle for bringing about environmental and behavioral 

changes that will improve the health of the community and its members It often involves partnerships and coalitions that help mobilize 

resources and influence systems, change relationships among partners, 

and serve as catalysts for changing policies, programs, and practices 

(CDC, 1997, p 9)

Community engagement can take many forms, and partners can include 

organized groups, agencies, institutions, or individuals Collaborators may 

be engaged in health promotion, research, or policy making

Community engagement can also be seen as a continuum of 

community involvement Figure 11 below, modified from a diagram originally drawn by the International Association for Public 

Participation, illustrates one way of thinking about such a continuum Over time, a specific collaboration is likely to move along 

this continuum toward greater community involvement, and any 

given collaboration is likely to evolve in other ways, too Most 

notably, while community engagement may be achieved during a 

time-limited project, it frequently involves — and often evolves into 

— long-term partnerships that move from the traditional focus on a 

single health issue to address a range of social, economic, political, 

and environmental factors that affect health

Community engagement can 

take many forms, and partners 

can include organized groups, 

agencies, institutions, or 

individuals. Collaborators may 

be engaged in health promotion, 

research, or policy making.
8

Why Practice Community Engagement?

Advocates of community engagement assert that it improves health promotion 

and health research However, the processes, costs, and benefits of community engagement are still a relatively new field of study In 2004, AHRQ 

brought attention to the importance of empirical work in this area and greatly 

advanced our knowledge through a synthesis of the research, much of which 

indicated that community engagement strengthened the conduct of research 

(Viswanathan et al, 2004)

A recent review of the literature on community engagement identified nine 

areas in which community engagement made a positive impact (Staley, 2009) 

Although this study focused on research partnerships, many of its findings 

are relevant to community engagement in general The nine areas and the 

corresponding benefits were as follows:

1 Agenda—Engagement changes the choice and focus of projects, how they 

are initiated, and their potential to obtain funding New areas for collaboration are identified, and funding that requires community engagement 

becomes accessible

Figure 1.1. Community Engagement Continuum

Increasing Level of Community Involvement, Impact, Trust, and Communication Flow

Some Community 

Involvement

Communication flows 

from one to the other, to 

inform

Provides community with 

information.

Entities coexist.

Outcomes: Optimally, 

establishes communication channels and channels for outreach.

Outreach

More Community 

Involvement

Communication flows to 

the community and then 

back, answer seeking

Gets information or feedback from the community.

Entities share information.

Outcomes: Develops connections.

Consult

Better Community 

Involvement

Communication flows 

both ways, participatory 

form of communication

Involves more participation with community on 

issues.

Entities cooperate with 

each other.

Outcomes: Visibility of 

partnership established 

with increased coopera- tion.

Involve

Community Involvement

Communication flow is 

bidirectional

Forms partnerships with 

community on each 

aspect of project from 

development to solution.

Entities form bidirectional 

communication channels.

Outcomes: Partnership 

building, trust building.

Collaborate

Reference: Modified by the authors from the International Association for Public Participation. 

Strong Bidirectional 

Relationship

Final decision making is 

at community level.

Entities have formed 

strong partnership 

structures.

Outcomes: Broader 

health outcomes affecting broader community. 

Strong bidirectional trust 

built.

Shared Leadership
9

2 Design and delivery—Improvements to study design, tools, interventions, 

representation/participation, data collection and analysis, communication, 

and dissemination can be implemented New interventions or previously 

unappreciated causal links can be identified through the community’s knowledge of local circumstances The speed and efficiency of the project can be 

enhanced by rapidly engaging partners and participants and identifying new 

sources of information

3 Implementation and change—Improvements can be made in the way research 

findings are used to bring about change (eg, through new or improved services, policy or funding changes, or transformation of professional practices), 

and capacity for change and the maintenance of long-term partnerships can 

be expanded

4 Ethics—Engagement creates opportunities to improve the consent process, 

identify ethical pitfalls, and create processes for resolving ethical problems 

when they arise

5 The public involved in the project—The knowledge and skills of the public involved in the project can be enhanced, and their contributions can 

be recognized (possibly through financial rewards) These efforts foster 

goodwill and help lay the groundwork for subsequent collaborations

6 Academic partners—Academic partners can gain enhanced understanding 

of the issue under study and appreciation of the role and value of community 

involvement, which sometimes result in direct career benefits In addition, 

new insights into the relevance of a project and the various benefits to 

be gained from it can result in increased opportunities to disseminate its 

findings and their wider use

7 Individual research participants—Improvements in the way studies are 

carried out can make it easier to participate in them and bring benefits to 

participants

8 Community organizations—These organizations can gain enhanced knowledge, a higher profile in the community, more linkages with other community 

members and entities, and new organizational capacity These benefits can 

create goodwill and help lay the groundwork for subsequent collaborations
10

9 The general public—The general public is likely to be more receptive to 

the research and reap greater benefits from it

The author of the review acknowledged that there can be costs associated 

with community engagement (eg, increased time and other resource needs, 

the need to develop new skill sets, increased expectations) but contended 

that these are more than outweighed by the positive impacts and generally 

can be addressed over time through training and experience (Staley, 2009)

USEFUL CONCEPTS FOR THE PRACTICE OF COMMUNITY ENGAGEMENT

The social science and public health fields provide us not only with useful 

definitions of community and ideas about community engagement but also 

with a wealth of concepts that are relevant to the practice of engagement 

Here, we explore some of the most important

Culture and Community Engagement

One of the more useful of the hundreds of definitions of culture is this one 

from the anthropologist Christie Kiefer (2007): “a complex integrated system 

of thought and behavior shared by members of a group — a system whose 

whole pattern allows us to understand the meanings that people attach to 

specific facts and observations” Culture shapes identities and fosters notions 

of community, and it shapes how individuals and groups relate to each other, 

how meaning is created, and how power is defined Furthermore, culture 

shapes ideas about partnership, trust, and negotiation Therefore, culture 

shapes the process of community engagement, and effective engagement 

requires an understanding of culture (Blumenthal et al, 2004; Dévieux et 

al, 2005; Silka et al, 2008)

In particular, researchers and practitioners need to understand the cultural 

dynamics of specific groups and institutions in order to build relationships, 

identify ways to effectively collaborate, and build respect and trust This 

is an ongoing effort for all involved in the community engagement process 

(Harrell et al, 2006; Minkler et al, 2004; Shoultz et al, 2006; Sullivan et 

al, 2001) Communities are not homogeneous entities; they are made up 

of diverse groups with different histories, social structures, value systems, 

and cultural understandings of the world
11

There is no question that culture and health are intimately connected Indeed, 

culture influences perceptions of illness and suffering, methods of disease 

prevention, treatments for illness, and use of health services Both medical 

and public health literature recognize the connection between health and 

culture (Airhihenbuwa, 2007; Fisher et al, 2007; Krumeich et al, 2001; 

Resnicow et al, 1999), but the solution to bridging cultural boundaries is 

often presented as acquiring “cultural competency,” or having knowledge 

of a group’s cultural differences and typical behaviors or beliefs This is 

inadequate, however As anthropologists have demonstrated, culture is 

dynamic and complex, and cultural competence is more than identifying 

how a group is thought to differ from prevailing standards or norms of 

behavior and belief (Carpenter-Song et al, 2007) Focusing on the meanings 

that individuals share and on the explanatory models they use to discuss 

their health problems provides a richer understanding of these individuals and can yield a cultural understanding that is rooted in their real lives 

rather than in stereotypes This meaning-centered approach can also help 

reveal how community conditions are determined by social, economic, and 

political forces rather than simply by individual choices (Carpenter-Song 

et al, 2007; Kleinman et al, 2006; Kumagai et al, 2009; Silka et al, 2008)

To achieve successful collaboration with a community, all parties involved need to strive to understand the point of view of 

“insiders,” whether they are members of a neighborhood, religious institution, health practice, community organization, or 

public health agency Key to developing such understanding is 

recognizing one’s own culture and how it shapes one’s beliefs 

and understanding of health and illness (Airhihenbuwa, 2007; 

Hahn, 1999; Harrell et al, 2006; Kleinman, 1980; Minkler, 2004) 

For example, community-engaged programs and research often 

involve people from universities or health institutions working 

with community groups in areas labeled “low income” or “at risk” 

Acknowledging diversity in background, experience, culture, 

income, and education and examining how society produces 

privilege, racism, and inequalities in power should be central to 

the process of community engagement Such an approach can help partners 

better understand and address the roots of health issues and guard against 

reproducing repressive patterns within their partnerships (Chávez et al, 2008; 

Chavez et al, 2007; Jones et al, 2000; Krieger et al, 1999; Yonas et al, 2006)

To achieve successful 

collaboration with a community, 

all parties involved need to strive 

to understand the point of view 

of “insiders,” whether they are 

members of a neighborhood, 

religious institution, health 

practice, community organization, 

or public health agency.
12

Done well, the community-engaged approach can enable partnerships to 

develop programs and research “in ways that are consistent with a people’s 

and a community’s cultural framework” (Airhihenbuwa, 1995) When 

researchers and organizers work collaboratively with community organizations throughout a project, they can produce effective, culturally appropriate 

programs and robust research results

Community Organization

The practice and theory of community organizing provide useful insights into 

mobilizing the community to engage in health promotion The foundation 

for community organizing is the principle of social action, bringing people 

together — often, but not exclusively, from the same neighborhood — to 

pursue a shared interest (Braithwaite et al, 1994)

When pursuing social action, a key question is who represents the community Often, the most empowered members of a community will quickly 

move to the forefront, regardless of whether they are truly the most representative (Geiger, 1984) Similarly, engagement leaders may want to work 

with those who can most readily deliver what they want (such as research 

participants and data sources), but these persons may not be representative 

of the community Facilitating community organization cannot be allowed 

to serve the needs of individual partners at the expense of the larger community (CARE: Community Alliance for Research and Engagement, 2009)

Community organizing is based on the principles of empowerment, community competence, active participation, and “starting where the people 

are” (Nyswander, 1956, as cited in Minkler, 2005, p 27) As Labonte et 

al (1996) state, imposing one’s own notions of health concerns over the 

community’s risks several disabling effects These include being irrelevant 

to the community, creating feelings of powerlessness in the community, 

complicating individuals’ lives, and channeling local activism away from 

important challenges toward less important ones

Community organizing recognizes that, in order to change, we all must 

feel a need for change, and that we are more likely to do so when we are 

involved in group learning and decision making (Minkler, 1990) An important element of community organizing is helping communities look at the 
13

root causes of problems while at the same time selecting issues that are 

“winnable, simple, and specific” and that can unite members of the group, 

involve them in achieving a solution, and further build the community 

(Minkler, 1990)

Community Participation

Community engagement requires participation of community 

members in projects that address their issues Meaningful community participation extends beyond physical involvement to 

include generation of ideas, contributions to decision making, and 

sharing of responsibility Among the factors that motivate people 

to participate are wanting to play an active role in bettering their 

own lives, fulfilling social or religious obligations, feeling a need 

for a sense of community, and wanting cash or in-kind rewards 

Whatever people’s motivations, obtaining meaningful community participation and having a successful, sustained initiative 

require that engagement leaders respect, listen to, and learn from community 

members An absence of mutual respect and co-learning can result in a loss 

of time, trust, resources, and, most importantly, effectiveness (Henry, 2011; 

Miller et al, 2005; Minkler et al, 2009)

The “social exchange” perspective provides insight into motivations for participation; it uses the framework of benefits and costs to help explain who 

participates and why From this perspective, organizations and individuals 

are involved in an “exchange system” and voluntarily share resources to 

meet their goals (Levine et al, 1961) Community members and organizations 

will participate if they perceive that the benefits of participation outweigh 

the effort required (Butterfoss, 2006; Butterfoss et al, 1993; Wandersman 

et al, 1987)

The potential benefits of participation for community members, academics, and 

health professionals include opportunities for networking, access to information 

and resources, personal recognition, learning, a sense of helping to solve community problems, improved relationships among stakeholders, increased capacity 

for problem solving, and contact with hard-to-reach populations (Butterfoss, 

2006) Costs include the time and energy required to build relationships and 

other infrastructure and the lessening of control over initiatives (Staley, 2009)

Meaningful community 

participation extends beyond 

physical involvement to include 

generation of ideas, contributions 

to decision making, and sharing of 

responsibility.
14

Recently, literature has shifted from a focus on a social exchange model to 

other challenges and facilitators of community participation (Shalowitz et al, 

2009) Some of these writings are based on experience rather than theory, 

but they may lead to the development of improved theories of participation 

(Michener et al, 2008; Williams et al, 2009)

Robert Putnam (2001) initiated an important debate about the degree to 

which Americans volunteer for and participate in group and community 

activities with the publication of Bowling Alone. In the book, Putnam argued 

that the willingness to volunteer and participate in public life waxes and 

wanes over time but that overall it has declined in recent decades If there 

is indeed a trend away from civic engagement, it would affect efforts to 

engage communities in improving health

Regardless of whether one agrees with Putnam’s assessment, it is essential to 

recognize that the community’s time is valuable and limited Furthermore, 

developing relationships with individuals and community organizations, 

identifying common interests, and developing a shared sense of needs 

and shared ways to address those needs can take engagement leaders and 

stakeholders an enormous amount of time Given the expanded roles that 

community members are being asked to play in the development of social 

programs and in research, we must consider how to compensate them for 

their participation, and we should involve them in this process

The costs, benefits, and perceived risks of participation can sometimes be 

changed with collaborative planning and decision making For example, 

academic partners have traditionally presumed ownership of any data or 

other tangibles resulting from research, but if the benefits of participation 

are to outweigh the costs and the principles of community engagement are 

to be met, the community should be involved early on in identifying what 

assets the research will produce and the rights of each partner to use those 

assets (see Yale Center for Clinical Investigation/Community Alliance for 

Research and Engagement, 2009)

Constituency Development

Developing a constituency, or developing relationships with community members who have a stake in and support public health and health care, involves 

four “practice elements”:
15

•	 	Know	the	community,	its	constituents,	and	its	capabilities.

•	 Establish	positions	and	strategies	that	guide	interactions	with	constituents.

•	 	Build	and	sustain	formal	and	informal	networks	to	maintain	relationships,	

communicate messages, and leverage resources

•	 	Mobilize	communities	and	constituencies	for	decision	making	and	social	

action (Hatcher et al, 2008)

These four elements, which provide a simple, useful framework for thinking about the requirements of community engagement, will be revisited in 

Chapter 4’s discussion of the organizational support required for community 

engagement

Capacity Building

Building capacity to improve health involves the development 

of sustainable skills, resources, and organizational structures in 

the affected community For engagement efforts to be equitable, 

effective, and sustainable, all stakeholders must be ready for collaboration and leadership Thus, building capacity also includes 

fostering shared knowledge, leadership skills, and an ability to 

represent the interests of one’s constituents Because capacity 

building is deeply rooted in the social, political, and economic 

environment, it cannot be conducted without an understanding of 

the specific environment in which it will take place (Eng et al, 1994) When 

carried out with context in mind, capacity building is an integral part of community engagement efforts, necessary for challenging power imbalances and 

effectively addressing problems

Community Empowerment

The theoretical roots of “empowerment” as a critical element of community 

engagement can be traced back to Brazilian educator Paolo Freire (Freire, 

1970; Hur, 2006) As articulated by Kenneth Maton (2008), empowerment is “a 

group-based participatory, developmental process through which marginalized 

or oppressed individuals and groups gain greater control over their lives and 

environment, acquire valued resources and basic rights, and achieve important 

Building capacity to improve 

health involves the development of 

sustainable skills, resources, and 

organizational structures in the 

affected community.
16

life goals and reduced societal marginalization” Ideally, empowerment is both 

a process and an outcome of community engagement

Empowerment takes place at three levels: the individual, the organization or group, and the community Empowerment at one level can 

influence empowerment at the other levels Furthermore, empowerment is multidimensional, taking place in sociological, psychological, 

economic, political, and other dimensions (Fawcett et al, 1995; Hur, 

2006; Maton, 2008; Rich et al, 1995) Community-level empowerment 

“challenges professional relationships to communities, emphasizing 

partnership and collaboration rather than a top-down approach” 

(Wallerstein, 2002, p 74)

Empowerment theory stresses that no external entity should assume that it can 

bestow on a community the power to act in its own self-interest Rather, those 

working to engage the community should, when appropriate, offer tools and 

resources to help the community act in its own interest This could include helping to channel existing sources of community power in new ways to act on the 

determinants of health Kretzmann et al (1996) note that communities are usually 

assessed in terms of their problems, but they point out that this demeans and 

disempowers the community, relegating its members to the roles of dependents 

and recipients of services They advocate for assessing communities in terms of 

their own assets, resources, and resourcefulness (Kretzmann et al, 1996)

Coalition Building

Community engagement often involves building coalitions, defined by Cohen 

et al (2002) as “a union of people and organizations working to influence 

outcomes on a specific problem” (p 144) The goals of a coalition might range 

from sharing information and resources to advocating for specific policy 

changes (Cohen et al, 2002) Increasingly, funders have supported the building 

of coalitions for improving community health (Butterfoss et al, 1993; Green 

et al, 2001a; Hill et al, 2007)

The motivation to create coalitions comes from the recognition that they can 

accomplish what each partner cannot accomplish alone Political science literature suggests that:

Empowerment takes place at 

three levels: the individual, the 

organization or group, and the 

community.
17

•	 	Coalitions	require	that	each	party	believe	it	needs	help	to	reach	its	goals.

•	 	The	goals	and	perspectives	of	the	members	of	a	coalition	will	not	all	be	

shared However, the coalition requires sufficient common ground that the 

parties can agree over time on a purpose, set of policies, and strategies

•	 	Coalitions	require	continuous	and	often	delicate	negotiation	among	their	

participants

•	 	The	distribution	of	power	and	benefits	among	the	members	of	a	coalition	

is an ongoing concern; all members need to believe that, over time, they 

are receiving benefits that are comparable to their contributions (Sofaer, 

1993)

Coalitions can help the engagement process in a number of ways, including 

maximizing the influence of individuals and organizations, creating new collective resources, and reducing the duplication of efforts The effectiveness of 

coalitions has been evaluated on two distinct bases: how well the members 

work together, and what kinds of community-level changes they bring about 

While noting that the research literature is inadequate for determining which 

factors are associated with the effectiveness of coalitions, Zakocs et al (2006) 

suggest six possibilities: formalization of rules/procedures, leadership style, 

participation of members, diversity of membership, collaboration, and group 

cohesion

Based on their review of the literature on coalitions, Butterfoss et al (2002) 

developed community coalition action theory, which provides 23 practice-based 

propositions that address processes ranging from the formation of coalitions 

through the institutionalization of long-lasting coalitions These propositions, 

which shed light on how to create and support effective long-term alliances, 

will be discussed in greater detail in Chapter 4

THE ETHICS OF COMMUNITY ENGAGED RESEARCH

Debates about the ethics of clinical research are not new (Chen et al, 2006; 

Emanuel et al, 2000; Levine, 1988), but community-engaged research (CEnR) 
18

raises additional questions and challenges Community engagement is about relationships between and among communities, 

researchers, and research institutions What ethical code should 

we use to assess the conduct of those relationships, and how 

should that code be monitored and enforced? As CEnR has become 

more prevalent and more varied, this fundamental question has 

generated a number of specific questions and ideas (Khanlou et 

al, 2005; Silverstein et al, 2008)

A well-accepted ethical code concerning research that involves living human 

beings already exists, and a regulatory process based in this code has been 

developed for all federally funded “human subjects research” The need for this 

ethical code stems from the nature of research — by definition, that which is 

being researched has not yet been “proven” Accordingly, there is uncertainty 

about the results of research activities, including the possibility of harm to 

participants In this ethical framework, studies are understood to fall into two 

general categories: those that present minimal risk to participants, and those 

that may subject participants to more than minimal risk (see Common Rule 

45 CFR [Code of Federal Regulations] 46102(h)(i))

All federally funded research that involves living people requires review 

by an institutional review board (IRB); the people who serve on IRBs and 

review research have a responsibility to ensure that risk to participants is 

minimized The issues that IRBs consider include the risks to participants, 

the procedures for collecting and protecting research data, the strength of the 

scientific design, and the process by which individuals give their informed 

consent to participate in research

Should there be a process for determining whether a CEnR collaboration is 

based on trust and whether each partner has successfully fulfilled his or her 

responsibilities to the other partners and to the project? If there should be 

such a process or similar processes, should they be the responsibility of the 

IRB? In their reviews, IRBs typically have not considered many activities and 

principles of community engagement For example, although IRBs may require 

letters of support from community partners, they are not concerned with how 

well the researcher knows the community or whether trust has been established Once research has been approved, the IRB will not typically obtain 

community input for its regular reviews of research protocols Furthermore, 

Community engagement is about 

relationships between and among 

communities, researchers, and 

research institutions.
19

studies demonstrate that IRBs generally do not incorporate the principles of 

CEnR into their considerations, even for studies that are community engaged 

(Flicker et al 2007), and some have questioned whether the current IRB system 

is appropriate to provide oversight for all forms of CEnR (Brugge et al, 2003; 

Malone et al, 2006; Ross et al, 2010a, 2010b, 2010c; Shore, 2007) Finally, the 

majority of IRBs do not want to take on this additional task, and researchers 

and others are wary of “IRB mission creep” as these boards take on more and 

more regulatory responsibility (Center for Advanced Study, 2004)

The Yale University CTSA’s Community Alliance for Research and Engagement 

(CARE) Ethical Principles of Engagement Committee (2009) developed an 

expanded set of principles that is relevant to this discussion The committee’s 

view is that ethical review applies “not only to individual research subjects 

but also to interactions between the research partners” (p 2) The committee 

explains: “Each partner has certain responsibilities Among the most important of these is that each should recognize the other’s needs and empower the 

other to assert its unique rights within the relationship” (CARE, 2009, p 9)

Part of ethical conduct is developing a legitimate and serious dissemination 

plan for the findings of the proposed research that will meet the needs of 

both communities and researchers In addition to its emphasis on ethical and 

empowering practice among partnership organizations, the CARE Committee 

extends the principles and protections of the Belmont Report to communities:

University Researchers should involve Community partners as early as 

possible in discussions about the potential uses of all data to be collected, 

including a dissemination plan for the sharing of the research findings 

with the wider [non-academic] Community, and should develop a process 

for handling findings that may reflect negatively and thus cause harm 

to one or both partners (CARE, 2009, p 3)

Others have called for ethical review to consider the risks and benefits 

for both individual participants and entire communities and are asking 

whether it should be required that communities, as well as individuals, 

consent to research This issue is particularly relevant for research into the 

relationship between the environment and health because the discovery 

and dissemination of environmental information may affect the well-being 

of an entire community (Brown et al, 2006; Gbadegesin et al, 2006; Shore, 
20

2006; Wing, 2002) There is also uncertainty about the roles and authority 

of community advisory boards and what ethical principles, if any, govern 

these boards (Blumenthal, 2006; Gilbert, 2006; Quinn, 2004)

Developing a comprehensive list of ethical questions for CEnR is challenging 

because the purpose, approach, and context for such research varies greatly 

from one project to another (Green et al, 2001b; Israel et al, 1988) As both 

the volume and range of CEnR activities that focus on health expand, ideas 

about the ethical review of such research, both inside and outside the health 

field, will continue to develop

MODELS AND FRAMEWORKS FOR THE PRACTICE 

OF COMMUNITY ENGAGEMENT

In addition to the concepts just summarized, the literature provides models 

and frameworks for understanding health promotion and health research 

that can be helpful in the practice of community engagement We cover a 

number of those here

The Social Ecological Model of Health

The social ecological model conceptualizes health broadly and focuses on 

multiple factors that might affect health This broad approach to thinking of 

health, advanced in the 1947 Constitution of the World Health Organization, 

includes physical, mental, and social well-being (World Health Organization, 

1947) The social ecological model understands health to be 

affected by the interaction between the individual, the group/

community, and the physical, social, and political environments 

(Israel et al, 2003; Sallis et al, 2008; Wallerstein et al, 2003)

Both the community engagement approach and the social ecological model recognize the complex role played by context in 

the development of health problems as well as in the success or 

failure of attempts to address these problems Health professionals, researchers, and community leaders can use this model to 

identify factors at different levels (the individual, the interpersonal level, 

the community, society; see Figure 12) that contribute to poor health and to 

develop approaches to disease prevention and health promotion that include 

The social ecological model 

understands health to be affected 

by the interaction between the 

individual, the group/community, 

and the physical, social, and 

political environments. 
21

action at those levels This approach focuses on integrating approaches to 

change the physical and social environments rather than modifying only 

individual health behaviors

Stokols (1996) proposes four core principles that underlie the ways the social 

ecological model can contribute to efforts to engage communities:

•	 	Health	status,	emotional	well-being,	and	social	cohesion	are	influenced	by	

the physical, social, and cultural dimensions of the individual’s or community’s environment and personal attributes (eg, behavior patterns, 

psychology, genetics)

•	 	The	same	environment	may	have	different	effects	on	an	individual’s	health	

depending on a variety of factors, including perceptions of ability to control 

the environment and financial resources

•	 	Individuals	and	groups	operate	in	multiple	environments	(e.g.,	workplace,	

neighborhood, larger geographic communities) that “spill over” and influence each other

•	 	There	are	personal	and	environmental	“leverage	points,”	such	as	the	physical environment, available resources, and social norms, that exert vital 

influences on health and well-being

To inform its health promotion programs, CDC (2007) created a four-level model 

of the factors affecting health that is grounded in social ecological theory, as 

illustrated in Figure 12

Figure 1.2. The Social-Ecological Model: A Framework for Prevention

Societal Community Relationship Individual
22

The first level of the model (at the extreme right) includes individual biology and other personal characteristics, such as age, education, income, and 

health history The second level, relationship, includes a person’s closest social 

circle, such as friends, partners, and family members, all of whom influence 

a person’s behavior and contribute to his or her experiences The third level, 

community, explores the settings in which people have social relationships, 

such as schools, workplaces, and neighborhoods, and seeks to identify the 

characteristics of these settings that affect health Finally, the fourth level 

looks at the broad societal factors that favor or impair health Examples here 

include cultural and social norms and the health, economic, educational, and 

social policies that help to create, maintain, or lessen socioeconomic inequalities between groups (CDC, 2007; Krug et al, 2002)

The CDC model enables community-engaged partnerships to identify a comprehensive list of factors that contribute to poor health and develop a broad 

approach to health problems that involves actions at many levels to produce 

and reinforce change For example, an effort to reduce childhood obesity might 

include the following activities at the four levels of interest:

•	 Individual: Conduct education programs to help people make wise choices 

to improve nutritional intake, increase their physical activity, and control 

their weight

•	 	Interpersonal	relationships: Create walking clubs and work with community groups to introduce healthy menus and cooking methods Promote 

community gardening groups

•	 	Community: Work with local grocery stores and convenience stores to help 

them increase the amount of fresh fruits and vegetables they carry Establish 

farmers’ markets that accept food stamps so that low-income residents can 

shop there Work with the city or county to identify walking trails, parks, 

and indoor sites where people can go to walk, and publicize these sites If 

the area needs additional venues for exercise, build community demand 

and lobby for new areas to be built or designated Work with local employers to develop healthier food choices on site and to create other workplace 

health programs
23

• Soc ety Advocate for the passage of regulations to (1) eliminate soft drinks 

and high-calorie snacks from all schools, (2) ban the use of trans–fatty 

acids in restaurant food, or (3) mandate that a percentage of the budget for 

road maintenance and construction be spent on creating walking paths 

and bike lanes

i :

Long-term attention to all levels of the social ecological model creates the 

changes and synergy needed to support sustainable improvements in health

The Active Community Engagement Continuum

The Active Community Engagement (ACE) continuum provides a framework 

for analyzing community engagement and the role the community plays 

in influencing lasting behavior change ACE was developed by the Access, 

Quality and Use in Reproductive Health (ACQUIRE) project team, which is 

supported by the US Agency for International Development and managed 

by EngenderHealth in partnership with the Adventist Development and Relief 

Agency International, CARE, IntraHealth International, Inc, Meridian Group 

International, Inc, and the Society for Women and AIDS in Africa (Russell 

et al, 2008) The ACE continuum is based on a review of documents, best 

practices, and lessons learned during the ACQUIRE project; in a paper by 

Russell et al (2008) the continuum is described as follows:

The continuum consists of three levels of engagement across five 

characteristics of engagement The levels of engagement, which move 

from consultative to cooperative to collaborative, reflect the realities of 

program partnerships and programs These three levels of community 

engagement can be adapted, with specific activities based on these 

categories of action The five characteristics of engagement are community involvement in assessment; access to information; inclusion in 

decision making; local capacity to advocate to institutions and governing structures; and accountability of institutions to the public (p 6)

The experience of the ACQUIRE team shows that community engagement is 

not a one-time event but rather an evolutionary process At each successive 

level of engagement, community members move closer to being change agents 

themselves rather than targets for change, and collaboration increases, as does 

community empowerment At the final (collaborative) level, communities 
24

and stakeholders are represented equally in the partnership, and all parties 

are mutually accountable for all aspects of the project (Russell et al, 2008)

Diffusion of Innovation

Everett Rogers (1995) defined diffusion as “the process by which an innovation 

is communicated through certain channels over time among the members of a 

social system” (p 5) Communication, in turn, according to Rogers, is a “process 

in which participants create and share information with one another in order 

to reach a mutual understanding” (p 5) In the case of diffusion of innovation, 

the communication is about an idea or new approach Understanding the diffusion process is essential to community-engaged efforts to spread innovative 

practices in health improvement

Rogers offered an early formulation of the idea that there are different stages 

in the innovation process and that individuals move through these stages at 

different rates and with different concerns Thus, diffusion of innovation provides a platform for understanding variations in how communities (or groups 

or individuals within communities) respond to community engagement efforts

In Rogers’ first stage, knowledge, the individual or group is exposed to an 

innovation but lacks information about it In the second stage, persuasion,

the individual or group is interested in the innovation and actively seeks out 

information In decision, the third stage, the individual or group weighs the 

advantages and disadvantages of using the innovation and decides whether to 

adopt or reject it If adoption occurs, the individual or group moves to the fourth 

stage, implementation, and employs the innovation to some degree During this 

stage, the usefulness of the innovation is determined, and additional information 

may be sought In the fifth stage, confirmation, the individual or group decides 

whether to continue using the innovation and to what extent

Rogers noted that the innovation process is influenced both by the individuals 

involved in the process and by the innovation itself Individuals include innovators, early adopters of the innovation, the early majority (who deliberate longer 

than early adopters and then take action), late adopters, and “laggards” who 

resist change and are often critical of others willing to accept the innovation
25

According to Rogers, the characteristics that affect the likelihood that an innovation will be adopted include (1) its perceived relative advantage over other 

strategies, (2) its compatibility with existing norms and beliefs, (3) the degree 

of complexity involved in adopting the innovation, (4) the “trialability” of the 

innovation (ie, the extent to which it can be tested on a trial basis), and (5) 

the observability of the results Greenhalgh et al (2004) expanded upon these 

characteristics of an innovation, adding (1) the potential for reinvention, (2) 

how flexibly the innovation can be used, (3) the perceived risk of adoption, (4) 

the presence of a clear potential for improved performance, (5) the knowledge 

required to adopt the innovation, and (6) the technical support required

Awareness of the stages of diffusion, the differing responses to 

innovations, and the characteristics that promote adoption can help 

engagement leaders match strategies to the readiness of stakeholders 

For example, a community-engaged health promotion campaign 

might include raising awareness about the severity of a health problem (knowledge, the first stage in Rogers’ scheme), transforming 

awareness into concern for the problem (persuasion), establishing 

a community-wide intervention initiative (adoption), developing the 

necessary infrastructure so that the provision of services remains 

extensive and constant in reaching residents (implementation), and/

or evaluation of the project (confirmation)

Community-Based Participatory Research

Community-based participatory research (CBPR) is the most well-known 

framework for CEnR As a highly evolved collaborative approach, CBPR 

would be represented on the right side of the continuum shown in Figure 11 

(page 8) In CBPR, all collaborators respect the strengths that each brings to 

the partnership, and the community participates fully in all aspects of the 

research process Although CBPR begins with an important research topic, 

its aim is to achieve social change to improve health outcomes and eliminate 

health disparities (Israel et al, 2003)

Wallerstein et al (2008) conducted a two-year pilot study that looked at how the 

CBPR process influences or predicts outcomes Using Internet survey methods 

and existing published literature, the study focused on two questions: What 

Awareness of the stages of 

diffusion, the differing responses to 

innovations, and the characteristics 

that promote adoption can help 

engagement leaders match 

strategies to the readiness of 

stakeholders.
26

Contexts Group Dynamics Intervention Outcomes

•	 Social-economic, cultural,

geographic, political-historical, environmental factors

•	 Policies/Trends: National/

local governance & political

climate

•	 Historic degree of collaboration and trust between

university & community

•	 Community: capacity,

readiness & experience

•	 University: capacity, readiness & reputation

•	 Perceived severity of health

issues

Structural Dynamics

•	 Diversity

•	 Complexity

•	 Formal agreements

•	 Real power/resource

sharing

•	 Alignment with CBPR

principles

•	 Length of time in

partnership

Individual Dynamics

•	 Core values

•	 Motivations for

participating

•	 Personal relationships

•	 Cultural identities/

humility

•	 Bridge people on

research team

•	 Individual beliefs,

spirituality & meaning

•	 Community reputation

of PI

Relational Dynamics

•	 Safety

•	 Dialogue, listening & mutual

learning

•	 Leadership & stewardship

•	 Influence & power dynamics

•	 Flexibility

•	 Self & collective reflection

•	 Participatory decisionmaking & negotiation

•	 Integration of local beliefs to

group process

•	 Flexibility

•	 Task roles & communication

•	 Intervention adapted

or created within local

culture

•	 Intervention informed

by local settings and

organizations

•	 Shared learning

between academic and

community knowledge

•	 Research and evaluation design reflects

partnership input

•	 Bidirectional translation, implementation &

dissemination

CBPR System & Capacity 

Changes

•	 Changes in policies/

practices:

- In universities and

communities

•	 Culturally based & sustainable

interventions

•	 Changes in power relations

•	 Empowerment:

- Community voices heard

	 - Capacities of advisory

councils

	 - Critical thinking

•	 Cultural revitalization &

renewal

Health Outcomes

•	 Transformed social/economic

conditions

•	 Reduced health disparities

Figure	1.3.	CBPR	Conceptual	Model.	A	later	version	of	this	diagram	can	be	found	in	Wallerstein	et	al.	(2010)

Contexts

Socioeconomic, Cultural, 

Geography & Environment

National & Local Policies/

Trends/Governance

Historic Collaboration:

Trust & Mistrust

Community Capacity 

& Readiness

University Capacity 

& Readiness

Health Issue Importance

Intervention

Reflects Reciprocal Learning

Fits Local/Cultural Beliefs,

Norms & Practices

Appropriate Research

Design

Outcomes

System & Capacity Changes

Improved Health

h Policies/Practices

h Sustained Interventions

h Changes in Power Relations

h Cultural Renewal

i Disparities

h Social Justice

Group Dynamics

Equitable Partnerships

Structural

Dynamics

Individual

Dynamics

Relational

Dynamics

Community

University

CBOs

Agencies

Used	with	permission	from	Minkler	et	al.,	2008.
27

is the added value of CBPR to the research itself and to producing outcomes? 

What are the potential pathways to intermediate system and capacity change 

outcomes and to more distal health outcomes? Through a consensus process 

using a national advisory committee, the authors formed a conceptual logic 

model of CBPR processes leading to outcomes (Figure 13) The model addresses 

four dimensions of CBPR and outlines the potential relationships between each 

The authors identify:

“contextual factors” that shape the nature of the research and the partnership, and can determine whether and how a partnership is initiated 

Next, group dynamics...interact with contextual factors to produce the 

intervention and its research design Finally, intermediate system and 

capacity changes, and ultimately, health outcomes, result directly from 

the intervention research (p 380)

Models such as these are essential to efforts to empirically assess or evaluate community engagement practices and disseminate effective approaches

Translational Research

NIH has created a new impetus toward participatory research through an 

increase in funding mechanisms that require participation and through its 

current focus on “translation” (ie, turning research into practice by taking 

it from “the bench to the bedside and into the community”) Increasingly, 

community participation is recognized as necessary for translating existing 

research to implement and sustain new health promotion programs, change 

clinical practice, improve population health, and reduce health disparities 

The CTSA initiative is the primary example of an NIH-funded mechanism 

requiring a translational approach to the clinical research enterprise (Horowitz 

et al, 2009)

The components of translational research are understood differently by different authors in the field In one widely used schema, translational research 

is separated into four segments: T1−T4 (Kon, 2008) T1 represents the translation of basic science into clinical research (phase 1 and 2 clinical trials), T2 

represents the further research that establishes relevance to patients (phase 

3 trials), T3 is translation into clinical practice, and T4 is the movement of 

“scientific knowledge into the public sector... thereby changing people’s 

everyday lives” (p 59) through public and other policy changes
28

Westfall et al (2007) have identified the lack of successful collaboration 

between community physicians and academic researchers as one of the major 

roadblocks to translation They note that although the majority of patients 

receive most of their medical care from a physician in a community setting, 

most clinical research takes place in an academic setting (Westfall et al, 2007) 

Consequently, the results of clinical trials may not be easily generalized to 

real-world clinical practices

One solution to this dilemma is practice-based research (PBR): engaging the 

practice community in research PBR has traditionally been conducted in a 

primary care setting using a coordinated infrastructure (physicians, nurses, 

and office staff), although the recent emphasis on translation has 

contributed to the emergence of more specialized practice-based 

research networks (eg, in nursing, dental care, and pharmacy) 

Like all efforts in engagement, developing PBR includes building 

trust, sharing decision making, and recognizing the expertise of 

all partners PBR addresses three particular concerns about clinical 

practice: identifying medical directives that, despite recommendations, are not being implemented; validating the effectiveness of 

clinical interventions in community-based primary care settings; 

and increasing the number of patients participating in evidencebased treatments (Westfall et al, 2007) “PBR also provides the laboratory 

for a range of research approaches that are sometimes better suited to translational research than are clinical trials: observational studies, physician and 

patient surveys, secondary data analysis, and qualitative research” (Westfall 

et al, 2007, p 405)

CONCLUSION

The wide-ranging literature summarized above shares several major themes:

•	 	There	are	multiple	reasons	for	community-engaged	health	promotion	and	

research

•	 	Community	engagement	must	be	conducted	in	a	manner	that	is	respectful	

of all partners and mindful of their need to benefit from collaboration

Like all efforts in engagement, 

developing PBR includes building 

trust, sharing decision making, 

and recognizing the expertise of 

all partners.
29

•	 	It	is	important	 to	understand	context	(in	all	its	complexity)	as	it	affects	

health problems and the development of health solutions

•	 	We	must	recognize	that	community-engaged	health	improvement	is	a	longterm, evolving process

Chapter 2 covers nine principles of community engagement that are grounded 

in the preceding literature Succeeding chapters develop practical applications 

and examples of the issues discussed in the first two chapters, specifically 

in the areas of planning and implementing CEnR and health promotion 

(Chapters 3 and 5), creating the management and organizational support 

necessary for community engagement (Chapter 4), using social networking 

for community engagement (Chapter 6), and evaluating community-engaged 

projects (Chapter 7)
30

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Principles of Community Engagement
45

Chapter 2

Principles of Community Engagement1

INTRODUCTION

In developing this primer, the authors drew on their knowledge of the literature, 

their practice experiences, and the collective experience of their constituencies in the practice of community engagement These practical experiences, 

combined with the organizing concepts, models, and frameworks from the 

literature, which were discussed in Chapter 1, suggested several underlying 

principles that can assist health professionals, researchers, policy makers, 

and community leaders in planning, designing, implementing, and evaluating community engagement efforts Because community processes can be 

complex, challenging, and labor-intensive, however, these health professionals and others require dedicated resources to help ensure their success In 

addition, efforts to engage communities require skill sets that leaders may not 

have previously developed Thoughtful consideration of the nine principles 

laid out in this chapter and what is needed to put them into action will help 

readers to form effective partnerships The principles are organized in three 

sections: items to consider prior to beginning engagement, what is necessary for engagement to occur, and what to consider for engagement to be 

1

 This chapter was adapted 

from the first edition of 

Principles of Community 

Engagement.
46

successful Each principle covers a broad practice area of engagement, often 

addressing multiple issues

BEFORE STARTING A COMMUNITY ENGAGEMENT EFFORT...

1. Be clear about the purposes or goals of the engagement effort and the 

populations and/or communities you want to engage.

Those wishing to engage the community need to be able to communicate to 

that community why its participation is worthwhile Of course, as seen in the 

discussion about coalition building and community organizing in Chapter 

1, simply being able to articulate that involvement is worthwhile does not 

guarantee participation Those implementing the effort should be prepared 

for a variety of responses from the community There may be many barriers 

to engagement and, as discussed in Chapter 1’s section on community participation, appropriate compensation should be provided to participants The 

processes for involvement and participation must be appropriate for meeting 

the overall goals and objectives of the engagement

The impetus for specific engagement efforts may vary For example, legislation or policy may make community involvement a condition of funding 

Engagement leaders may see community organizing and mobilization as 

part of their mission or profession, or they may recognize the strengths of 

community engagement: its potential to enhance the ethical foundations of 

action, the identification of issues, the design and delivery of programs, and 

translational research Alternatively, outside pressures may demand that an 

entity be more responsive to community concerns

Just as the impetus for community engagement varies, so do its goals For 

example, efforts in community engagement could be focused on specific 

health issues, such as HIV/AIDS, tuberculosis, mental illness, substance 

abuse, immunizations, or cardiovascular disease Alternatively, efforts could 

have a very broad focus, as in the following examples:

•	 	Focus	on	overall	community	improvement,	including	economic	and	infrastructure development, which will directly or indirectly contribute to health 

improvements and disease prevention
47

•	 	Ask	community	members	 to	specify	 their	health-related	concerns,	identify areas that need action, and become involved in planning, designing, 

implementing, and evaluating appropriate programs

The level at which goals are focused has implications for managing and 

sustaining the engagement A broader goal may enable community leaders 

to involve larger segments of the community, whereas a narrower focus may 

keep activities more directed and manageable

Similarly, participation by the community could have several possible dimensions Broadly speaking, leaders of efforts to engage communities need to 

be clear about whether they are (1) seeking data, information, advice, and 

feedback to help them design programs, or (2) interested in partnering and 

sharing control with the community The latter includes being willing to 

address the issues that the community identifies as important, even if those 

are not the ones originally anticipated

It is equally important to be clear about who is to be engaged, at least initially Is it all those who reside within certain geographic boundaries? Or is 

it a specific racial/ethnic group, an income-specific population, or an age 

group, such as youth? Is it a specific set of institutions and groups, such as 

faith communities, schools, or the judicial system? Or is it a combination? Is 

it a “virtual” community sharing a common interest? How might other collaborations or partnerships in the community of interest enhance engagement 

efforts? Answers to these questions will begin to provide the parameters for 

the engagement effort

2. Become knowledgeable about the community’s culture, economic conditions, 

social networks, political and power structures, norms and values, 

demographic trends, history, and experience with efforts by outside groups to 

engage it in various programs. Learn about the community’s perceptions of 

those initiating the engagement activities.

It is important to learn as much about the community as possible, through 

both qualitative and quantitative methods, and from as many sources as 

feasible Many of the organizing concepts, models, and frameworks presented in Chapter 1 support this principle Social ecological theories, for 

example, emphasize the need to understand the larger physical and social/
48

cultural environment and its interaction with individual health behaviors 

An understanding of how the community perceives the benefits and costs 

of participating will facilitate decision making and consensus building and 

will translate into improved program planning, design, policy development, 

organization, and advocacy The concept of stages of diffusion of innovation 

(discussed in Chapter 1) highlights the need to assess the community’s readiness to adopt new strategies Understanding the community will help leaders 

in the engagement effort to map community assets, develop a picture of how 

business is done, and identify the individuals and groups whose support is 

necessary, including which individuals or groups must be approached and 

involved in the initial stages of engagement

Many communities are already involved in coalitions and partnerships developed around specific issues such as HIV/AIDS, the prevention of substance 

abuse, and community and economic development It is important to consider 

how attempts to engage or mobilize the community around new issues may 

affect these preexisting efforts

It is also helpful for those initiating the community engagement process to consider how the community perceives them (or their affiliations) Understanding 

these perceptions will help them identify strengths they can build upon and 

barriers they need to overcome There are many community-engagement 

techniques that can be used to (1) learn about the community’s perceptions 

of the credibility of those initiating the process and (2) simultaneously lay 

the groundwork for meaningful and genuine partnerships

FOR ENGAGEMENT TO OCCUR, IT IS NECESSARY TO...

3. Go to the community, establish relationships, build trust, work with the formal 

and informal leadership, and seek commitment from community organizations 

and leaders to create processes for mobilizing the community.

Engagement is based on community support The literature on community 

participation and organization discussed in Chapter 1 illuminates this principle 

and suggests that positive change is more likely to occur when community 

members are an integral part of a program’s development and implementation 

All partners must be actively respected from the start For example, meeting 

with key community leaders and groups in their surroundings helps to build 
49

trust for a true partnership Such meetings provide the organizers of engagement activities with more information about the community, its concerns, and 

the factors that will facilitate or constrain participation In addition, community members need to see and experience “real” benefits for the extra time, 

effort, and involvement they are asked to give Once a successful rapport is 

established, meetings and exchanges with community members can build 

into an ongoing and substantive partnership

When contacting the community, some engagement leaders find 

it most effective to reach out to the fullest possible range of formal 

and informal leaders and organizations They try to work with all 

factions, expand the engagement table, and avoid becoming identified with one group Coalition building, as described in Chapter 

1, can be a key part of community engagement Alternatively, 

implementers of engagement efforts may find that identifying and 

working primarily with key stakeholders is the most successful 

approach Therefore, they engage with a smaller, perhaps more 

manageable, number of community members to achieve their 

mission The range of individuals and groups contacted for an engagement 

effort depends in part on the issue at hand, the engagement strategy chosen, 

and whether the effort is mandated or voluntary

It is essential for those engaging a community to adhere to the highest ethical 

standards Indeed, under some circumstances, community engagement might 

itself be considered an ethical imperative The rights, interests, and well-being 

of individuals and communities must have the utmost priority Past ethical 

failures such as the Tuskegee syphilis study have created distrust among some 

communities and have produced great challenges for community organizers 

The community must be educated about any potential for harm through its 

involvement with or endorsement of an initiative so it can make an informed 

decision Failure to act ethically is not an option

4. Remember and accept that collective self-determination is the responsibility 

and right of all people in a community. No external entity should assume it can 

bestow on a community the power to act in its own self-interest.

Just because an institution or organization introduces itself into the community 

does not mean that it automatically becomes of the community An organization 

When contacting the community, 

some engagement leaders find 

it most effective to reach out 

to the fullest possible range of 

formal and informal leaders and 

organizations.
50

is of the community when it is controlled by individuals or groups who are 

members of the community This concept of self-determination is central to 

the concept of community empowerment The dynamic can be quite complex, 

however, because communities themselves may have factions that contend 

for power and influence More broadly, it should be recognized that internal 

and external forces may be at play in any engagement effort As addressed in 

Principle 6 (below), a diversity of ideas may be encountered and negotiated 

throughout the engagement process

The literature on community empowerment strongly supports the idea that 

problems and potential solutions should be defined by the community 

Communities and individuals need to “own” the issues, name the problem, 

identify action areas, plan and implement strategies, and evaluate outcomes 

Moreover, people in a community are more likely to become involved if they 

identify with the issues being addressed, consider them important, and feel 

they have influence and can make a contribution Participation will also be 

easier to elicit if people encounter few barriers to participation, consider the 

benefits of participating to outweigh the costs (eg, time, energy, dollars), 

and believe that the participation process and related organizational climate 

are open and supportive

FOR ENGAGEMENT TO SUCCEED...

5. Partnering with the community is necessary to create change and improve health.

The American Heritage Dictionary defines partnership as “a relationship 

between individuals or groups that is characterized by mutual cooperation 

and responsibility, as for the achievement of a specified goal” Many of the 

organizing concepts, models, and frameworks highlighted in Chapter 1, such as 

social ecology, community participation, and community organization, speak 

to the relationship between community partnerships and positive change 

Indeed, community-based participatory research and current approaches to 

translational research explicitly recognize that community engagement significantly enhances the potential for research to lead to improved health by 

improving participation in the research, its implementation, and dissemination 

of its findings Community engagement based on improving health takes place 

in the context of and must respond to economic, social, and political trends 
51

that affect health and health disparities Furthermore, as the literature on 

community empowerment contends, equitable community partnerships and 

transparent discussions of power are more likely to lead to desired outcomes 

(see Principle 4) The individuals and groups involved in a partnership must 

identify opportunities for co-learning and feel that they each have something 

meaningful to contribute to the pursuit of improved health, while at the same 

time seeing something to gain Every party in such a relationship also holds 

important responsibility for the final outcome of an effort

6. All aspects of community engagement must recognize and respect the diversity 

of the community. Awareness of the various cultures of a community and 

other factors affecting diversity must be paramount in planning, designing, and 

implementing approaches to engaging a community.

Diversity may be related to economic, educational, employment, or health 

status as well as differences in culture, language, race, ethnicity, age, gender, 

mobility, literacy, or personal interests These elements of diversity may affect 

individuals’ and communities’ access to health care delivery, their health 

status, and their response to community engagement efforts For example, as 

indicated in Chapter 1, the processes, strategies, and techniques used to engage 

the community must be respectful of and complement cultural traditions 

The systems perspective suggests attention to another element of community 

diversity: the diversity of roles that different people and organizations play 

in the functioning of a community Engaging these diverse populations will 

require the use of multiple engagement strategies

7. Community engagement can only be sustained by identifying and mobilizing 

community assets and strengths and by developing the community’s capacity 

and resources to make decisions and take action.

Community assets include the interests, skills, and experiences of individuals 

and local organizations as well as the networks of relationships that connect 

them Individual and institutional resources such as facilities, materials, skills, 

and economic power all can be mobilized for community health decision 

making and action In brief, community members and institutions should be 

viewed as resources to bring about change and take action The discussion of 

community participation in Chapter 1 highlights the need to offer an exchange 

of resources to ensure community participation Of course, depending on 
52

the “trigger” for the engagement process (eg, a funded mandate vs a more 

grassroots effort), resources are likely to be quite varied

Although it is essential to begin by using existing resources, the literature 

on capacity building and coalitions stresses that engagement is more likely 

to be sustained when new resources and capacities are developed Engaging 

the community in making decisions about health and taking action in that 

arena may involve the provision of experts and resources to help communities develop the necessary capacities (eg, through leadership training) and 

infrastructure to analyze situations, make decisions, and take action

8. Organizations that wish to engage a community as well as individuals seeking 

to effect change must be prepared to release control of actions or interventions 

to the community and be flexible enough to meet its changing needs.

Engaging the community is ultimately about facilitating community-driven 

action (see discussions under community empowerment and community 

organization in Chapter 1) Community action should include 

the many elements of a community that are needed for the 

action to be sustained while still creating a manageable process 

Community engagement will create changes in relationships 

and in the way institutions and individuals demonstrate their 

capacity and strength to act on specific issues In environments 

characterized by dynamism and constant change, coalitions, 

networks, and new alliances are likely to emerge Efforts made to 

engage communities will affect the nature of public and private 

programs, policies, and resource allocation Those implementing 

efforts to engage a community must be prepared to anticipate and respond 

to these changes

9. Community collaboration requires long-term commitment by the engaging 

organization and its partners.

Communities and community collaborations differ in their stage of development (see the active community engagement continuum and diffusion of 

innovation in Chapter 1) As noted earlier, community engagement sometimes 

occurs around a specific, time-limited initiative More commonly, however, 

community participation and mobilization need nurturing over the long term 

Moreover, long-term partnerships have the greatest capacity for making a 

Community engagement will 

create changes in relationships 

and in the way institutions and 

individuals demonstrate their 

capacity and strength to act on 

specific issues.
53

difference in the health of the population Not surprisingly, building trust 

and helping communities develop the capacity and infrastructure for successful community action takes time Before individuals and organizations 

can gain influence and become players and partners in decision making 

and action steps taken by communities relative to their health, they may 

need additional resources, knowledge, and skills For example, partners 

might need long-term technical assistance and training related to developing an organization, securing resources, organizing constituencies to work 

for change, participating in partnerships and coalitions, resolving conflict, 

and other technical knowledge necessary to address issues of concern 

Furthermore, strategies must be developed for sustaining efforts The probability of sustained engagement and effective programming increases when 

community participants are active partners in the process

CONCLUSION

In this chapter, we presented nine principles that are essential to the success 

of community-engaged health promotion and research As noted in Chapter 

1, however, community engagement is a continuum, and its specifics must 

be determined in response to the nature of one’s endeavor and the organizational and community context in which it occurs The next chapter will 

provide examples of how these principles have been applied in specific collaborative efforts
Successful Examples in the Field
57

Chapter 3

Successful Examples in the Field

Robert Duffy, MPH (Chair), Sergio Aguilar-Gaxiola, MD, PhD, Donna Jo McCloskey, RN, PhD, 

Linda Ziegahn, PhD, Mina Silberberg, PhD

SUCCESSFUL EFFORTS IN COMMUNITY ENGAGEMENT

This chapter presents examples of successful community engagement efforts 

in health promotion, evaluation, and research that demonstrate the principles 

of engagement discussed in Chapters 1 and 2 The authors asked representatives from federal health agencies to recommend case examples of the effective 

use of community engagement that were published in peer-reviewed journals 

from 1997 to the present Of the examples submitted, 12 are presented here 

This chapter summarizes the articles associated with each case, emphasizing collaboration and the way the case illustrates the principles of interest 

Information is up to date as of the time of the article’s publication At the end 

of each case, references and websites are provided for further information 

regarding findings, funding sources, and follow-up The 12 examples are as 

follows:

1 Community Action for Child Health Equity (CACHÉ)

2 Health-e-AME
58

3 Project SuGAR

4 The Community Health Improvement Collaborative (CHIC)

5 Healing of the Canoe

6 Formando Nuestro Futuro/Shaping Our Future

7 I mproving American Indian Cancer Surveillance and Data Reporting in 

Wisconsin

8 C hildren And Neighbors Defeat Obesity/La Comunidad Ayudando A Los 

Niños A Derrotar La Obesidad (CAN DO Houston)

9 The Dental Practice-Based Research Network

10 D iabetes Education & Prevention with a Lifestyle Intervention Offered at 

the YMCA (DEPLOY) Pilot Study

11 Project Dulce

12 Determinants of Brushing Young Children’s Teeth
59

Principle 1 Principle 2 Principle 3 Principle 4 Principle 5 Principle 6 Principle 7 

Case Example Be clear about 

the population/ 

communities to 

be engaged and 

the goals of the 

effort.

Know the 

community, 

including its 

norms, history, 

and experience 

with engagement efforts.

Build trust 

and relationships and get 

commitments 

from formal 

and informal 

leadership.

Collective selfdetermination is 

the responsibility and right of 

all community 

members.

Partnering with 

the community 

is necessary to 

create change 

and improve 

health.

Recognize and 

respect community cultures 

and other 

factors affecting 

diversity in 

designing and 

implementing 

approaches.

Sustainability 

results from mobi

lizing community 

assets and develop

ing capacities and 

resources.

1. CACHÉ X X X X X X 2.Health-e-AME X X X X X3. Project SuGAR X X X X X X 

4. CHIC X X X X 

5. Healing of the Canoe X X X 6. Formando Nuestro 

Futuro/Shaping Our Future

X X 

7. Improving American 

Indian Cancer Surveillance and Data Reporting in Wisconsin

X X X X 

8. CAN DO Houston X X  9. The Dental PracticeBased Research Network X  X X10. The DEPLOY Pilot Study X X X X11. Project Dulce X X X 12. Determinants of 

Brushing Young Children’s Teeth

X X

TABLE 3.1. MATRIX OF CASE EXAMPLES1The following matrix summarizes the principles of community engagement illustrated by each of the case studies. The rationale for the selection of p1 The principles of community engagement have been abbreviated for this table
60

1. COMMUNITY ACTION FOR CHILD HEALTH EQUITY (CACHÉ)

Background: In 2002, the National Institute of Child Health and Human 

Development (NICHD) began funding a five-site Community Child Health 

Network (CCHN) to examine how community, family, and individual factors 

interact with biological causes to result in health disparities in perinatal 

outcomes and in mortality and morbidity during infancy and early childhood A large national cohort of families was recruited at the time of delivery 

with oversampling among African American and Latina women, women 

with preterm births, and low-income families The investigators periodically 

assessed mothers and fathers, measuring individual, family, community, 

and institutional stressors as well as resilience factors The three-phase 

study was designed to (1) develop academic-community partnerships and 

pilot studies; (2) conduct a longitudinal observational study to identify the 

pathways that lead to the disparities of interest, which would be informed 

by the initial developmental work; and (3) field a systematic study of sustainable interventions to eliminate these disparities, again informed by the 

observational study At the time of publication, Phase 1 had been completed 

and Phase 2, also funded by NICHD, was under way

CACHÉ is a partnership between the NorthShore Research Institute Section 

for Child and Family Health Studies and the Lake County Health Department/

Community Health Center Women’s Health Services CACHÉ is a CCHN site 

in Lake County, located north of Chicago During Phase 1, the county had 

702,682 residents, comprising a diverse mix of individuals from varied races, 

ethnicities, and socioeconomic status Even though Lake County had low 

unemployment between 2000 and 2005, 71% of the residents lived below 

the poverty line (Illinois Poverty Summit, 2005)

Methods: Community-based participatory research (CBPR) approaches were 

used for this study Following a kickoff meeting, 27 community leaders 

volunteered to participate in a community advisory committee (CAC) that 

still shares in all program decision making Interviews with these leaders 

were analyzed and findings shared with the CAC

Results: This initial process allowed the community members to come to a 

consensus about the issues facing the Lake County families The academic 

researchers and the community were able to create a vision for CACHÉ and 
61

a mission statement written in the language of the CAC As CACHÉ transitioned from Phase 1 to Phase 2, the sustainability of the CAC was addressed 

through an open-door policy for CAC members Each member was asked to 

bring whoever they thought was “missing at the table” for the next meeting

At the national level, community advisors informed academics that collecting 

saliva or whole blood spots from men in the community would be viewed 

suspiciously because of a legacy of distrust in this population and concerns 

regarding confidentiality In contrast, CACHÉ CAC members insisted that all 

clinically relevant testing be offered to fathers and mothers (with adequate 

explanation of the reasons for testing) and that clinical outreach and referral 

be offered in cases of abnormal findings CACHÉ found additional foundation funding to pay for biospecimen collection from fathers, as well as a 

clinical tracking system and a part-time clinical social worker to provide 

triage and referrals

One challenge to a long-term relationship between academic researchers and 

community organizations is the perception that the academic team has an 

unfair advantage in writing grants to obtain scarce funds from local foundations CACHÉ attempts to overcome this challenge by offering technical 

assistance for preparing submissions for foundation grants to any agency 

that belongs to its collective

Comments: Community wisdom brought to bear on the research process 

addressed local needs and moved CACHÉ to be highly innovative in both the 

collection of biospecimens from fathers and the communication of clinically 

relevant research findings to research participants in real time

Applications of Principles of Community Engagement: The decisions and 

the decision-making roles that community members and academic members 

assumed during the initial development phase of CACHÉ exemplify many 

of the principles of community engagement The decision to form a partnership with the community by creating a CAC was in line with Principles 

1–5 The CAC shared in the process of creating a mission statement, and 

the collaboration continued throughout this long-term program (Principle 

9) One unique aspect of CACHÉ is its insistence that goals be consistent 

with the overall CCHN objectives but be modified for local conditions By 
62

including the collection of biospecimens against the advice of the CCHN 

but in response to the needs of Lake County, the CACHÉ program exemplifies Principle 6, which stresses that all aspects of community engagement 

must recognize and respect community diversity, and Principle 8, which 

cautions that an engaging organization must be prepared to release control 

of actions or interventions to the community and be flexible enough to meet 

the changing needs of that community Finally, by responding constructively 

to perceptions that the academic team had an unfair advantage in writing 

grants, CACHÉ is using Principle 2, which acknowledges that the initiator 

of community engagement, in this case researchers, must become knowledgeable about the community’s experience with engagement efforts and 

the community’s perceptions of those initiating the engagement activities

References

Illinois Poverty Summit 2005 report on Illinois poverty. 2005 Retrieved Mar 

25, 2010, from http://wwwheartlandallianceorg/maip

Shalowitz M, Isacco A, Barquin N, Clark-Kauffman E, Delger P, Nelson D, 

et al Community-based participatory research: a review of the literature 

with strategies for community engagement Journal of Developmental and 

Behavioral Pediatrics 2009;30(4):350-361

Websites

wwwnorthshoreorg/research/priorities

wwwnichdnihgov/research/supported/cchncfm
63

2. HEALTH-E-AME

Background: The Medical University of South Carolina (MUSC) and the 

African Methodist Episcopal (AME) church had worked together on several 

health-related projects prior to this initiative A needs assessment completed 

in 2002 with a sample of AME members revealed that physical activity (PA) 

was low The AME Planning Committee, a group comprising AME members, 

pastors, and presiding elders as well as members of academic institutions, 

identified PA as an important target for reducing health disparities MUSC, 

the University of South Carolina, and the AME Planning Committee then collaborated on a proposal to CDC All three organizations participated actively 

in the proposal and the subsequent project, although the church opted to have 

the two universities handle the grant funds

Methods: A CBPR approach using a randomized design with a delayed intervention control group

The Health-e-AME Faith-Based PA Initiative was a three-year project funded 

through a CDC CBPR grant Because a traditional randomized controlled 

design was not acceptable to AME church leaders, a randomized design with 

a delayed-intervention control group was chosen instead

Results: More than 800 volunteers from 303 churches participated in the 

program Among survey respondents as a whole, PA did not increase significantly over time However, 67% of respondents were aware of the program, 

and program awareness was significantly related to PA outcomes and to 

consumption of fruits and vegetables Pastoral support was significantly 

associated with increased PA

Comments: The successful partnership between the researchers and 

the AME church continues to this day through the newly formed FAN 

(Faith, Activity, and Nutrition) initiative Those wishing to participate 

in partnerships between academic and faith-based organizations 

can glean useful information from Health-e-AME, including the 

process partnerships can use to develop, implement, and evaluate 

PA interventions PA interventions that actively engage faith-based 

organizations in decision making and program implementation are 

rare, making this approach and the lessons learned unique

The successful partnership 

between the researchers and the 

AME church continues to this 

day through the newly formed 

FAN (Faith, Activity, and Nutrition) 

initiative.
64

Applications of Principles of Community Engagement: The researchers’ 

partnership with the AME church reflects Principle 3, which asks organizers 

of community engagement to establish relationships and work with existing 

leadership structures The initiative was designed to increase participation in 

PA among adult members of the AME church community All decisions are 

based on active input and approval from the AME church In this way, the 

project is built on Principle 4, which stresses that those engaging a community 

cannot assume that they know what is best for the community Instead, decision making must occur on a partnership basis that results in shared power 

and mutual understanding This group collaboration also reflects Principles 

1–5 by establishing relationships and trust, allowing community control, and 

developing partnerships for change MUSC, the University of South Carolina, 

and the AME Planning Committee have collaborated throughout, beginning 

with the CDC application for a CBPR grant Because the partners have worked 

together from the beginning of the grant proposal and all decisions have been 

made through active input, this program exemplifies many of the principles 

of community engagement

References

Wilcox S, Laken M, Anderson T, Bopp M, Bryant D, Carter R, et al The 

health-e-AME faith-based physical activity initiative: description and baseline findings Health Promotion Practice 2007;8(1):69-78

Wilcox S, Laken M, Bopp M, Gethers O, Huang P, McClorin L, et al Increasing 

physical activity among church members: community-based participatory 

research American Journal of Preventive Medicine 2007;32(2):131-138
65

The success of the community 

engagement employed by Project 

SuGAR is further evidenced by 

the fact that the local CAC that 

started in 1996 is still operating 

today with the dual goals of 

establishing a family registry 

with DNA and developing longterm collaborations to promote 

preventative health. 

3. PROJECT SUGAR

Background: Gullah-speaking African Americans have high rates of type 2 

diabetes characterized by early onset and relatively high rates of complications 

(Sale et al, 2009) Researchers hoped to discover diabetes-specific alleles in 

this community because the Gullahs have a lower admixture of non-African 

genes in their genetic makeup than any other African American population 

in the United States due to their geographic isolation on the South Carolina 

coastline and islands In addition to the scientific objective of identifying the 

genetics behind diabetes, Project SuGAR (Sea Island Genetic African American 

Family Registry) had an important second objective: to provide community 

outreach to promote health education and health screenings relative to metabolic and cardiovascular diseases

Methods: The project used a CBPR approach Investigators organized a local 

citizen advisory committee (CAC) to ensure that the research design was 

sensitive to the cultural and ethnic background of the community This committee was involved in all phases of the research study

Results: Services provided to the community included health education fairs, 

cultural fairs, a mobile “SuGAR Bus” to conduct health screenings, and jobs 

for community members who were staff on the project Investigators exceeded 

their enrollment goal with 615 African American families, totaling 

1,230 people, contributing to the genome study The success of 

their recruitment strategy helped researchers create a world-class 

DNA registry that has been used to identify markers for diabetes, 

including novel type 2 diabetes loci for an African American 

population on chromosomes 14q and 7

Comment: The success of the community engagement employed 

by Project SuGAR is further evidenced by the fact that the local 

CAC that started in 1996 is still operating today with the dual 

goals of establishing a family registry with DNA and developing 

long-term collaborations to promote preventative health Under the 

new name Sea Islands Families Project, the local CAC oversees 

the use of the Project SuGAR registry and has branched out into 

similar community engagement projects such as Systemic Lupus 

Erythematosus in Gullah Health and South Carolina Center of 
66

Biomedical Research Excellence for Oral Health The local CAC adheres to 

the principles of CBPR and advocates community input at the initial development of the research plan To this end, investigators who are new to the 

Gullah community and interested in community-based genetic research are 

asked to present their research plan to the council members before initiation 

of research projects Investigators are also asked to present their findings as 

well as any publications to the group

Applications of Principles of Community Engagement: Project SuGAR exemplifies Principles 1–6, which ask researchers to be clear about the purposes 

or goals of the engagement effort, learn about the community, and establish 

long-term goals based on community self-determination Consistent with these 

principles, this partnership used a local CAC to ensure that the goals of the 

researchers were consistent with the goals of the community The ongoing 

nature of the MUSC-Gullah collaboration illustrates Principle 9

References

Fernandes JK, Wiegand RE, Salinas CF, Grossi SG, Sanders JJ, LopesVirella MF, et al Periodontal disease status in Gullah African Americans 

with type 2 diabetes living in South Carolina Journal of Periodontology 

2009;80(7):1062-1068

Johnson-Spruill I, Hammond P, Davis B, McGee Z, Louden D Health of Gullah 

families in South Carolina with type 2 diabetes: diabetes self-management 

analysis from Project SuGar The Diabetes Educator 2009;35(1):117-123

Spruill I Project Sugar: a recruitment model for successful African-American 

participation in health research Journal of National Black Nurses Association 

2004;15(2):48-53

Sale MM, Lu L, Spruill IJ, Fernandes JK, Lok KH, Divers J, et al Genomewide linkage scan in Gullah-speaking African American families with type 

2 diabetes: the Sea Islands Genetic African American Registry (Project 

SuGAR) Diabetes 2009;58(1):260-267
67

Websites

http://academicdepartmentsmuscedu/sugar/progresshtm

http://clinicaltrialsgov/ct2/show/NCT00756769

http://academicdepartmentsmuscedu/cobre/overviewhtml
68

4. THE COMMUNITY HEALTH IMPROVEMENT COLLABORATIVE (CHIC): 

BUILDING AN ACADEMIC COMMUNITY PARTNERED NETWORK FOR 

CLINICAL SERVICES RESEARCH

Background: In 1992, CDC funded Healthy African American Families (HAAF) 

to study the reasons for high rates of low birth weight and infant mortality 

among African Americans in Los Angeles The success of this collaboration 

led to the expansion of HAAF to investigate other health issues, including 

preterm delivery, mental health, diabetes, asthma, and kidney disease, as 

well as to look at various women’s health projects The academic 

component of HAAF evolved into the development of a research 

infrastructure, the Los Angeles Community Health Improvement 

Collaborative (CHIC) The purpose of CHIC was to encourage 

shared strategies, partnerships, and resources to support rigorous, 

community-engaged health services research within Los Angeles 

that was designed to reduce health disparities Partners in the 

collaborative were the RAND Health Program; the University 

of California, Los Angeles (UCLA), branch of the Robert Wood 

Johnson Clinical Scholars Program at the David Geffen School 

of Medicine; the UCLA Family Medicine Research Center; three 

NIH centers (at UCLA, RAND, and Charles R Drew University 

of Medicine and Science); the Los Angeles County Department 

of Health Services; the Los Angeles Unified School District; the 

Department of Veterans Affairs Greater Los Angeles Health Care 

System; Community Clinical Association of Los Angeles County; 

HAAF; and QueensCare Health and Faith Partnership

Methods: A CBPR approach using the principles of community engagement 

was employed to develop a community-academic council to coordinate the 

efforts of several research and training programs housed at three academic 

institutions

Results: The conceptual framework developed for CHIC emphasizes the use 

of community engagement to integrate community and academic perspectives 

and develop programs that address the health priorities of communities while 

building the capacity of the partnership Priorities for developing the research 

infrastructure included enhanced public participation in research, assessment 

The success of this collaboration 

led to the expansion of HAAF to 

investigate other health issues, 

including preterm delivery, mental 

health, diabetes, asthma, and 

kidney disease, as well as to 

look at various women’s health 

projects.
69

of the community context, development of health information technology, 

and initiation of practical trial designs Key challenges to addressing those 

priorities included (1) obtaining funding for community partners; (2) modifying evidence-based programs for underserved communities; (3) addressing 

diverse community priorities; (4) achieving the scale and obtaining the data 

needed for evaluation; (5) accommodating competing needs of community 

and academic partners; and (6) communicating effectively, given different 

expectations among partners

Comments: With strong leadership and collaboration based on the principles 

of community engagement, it is feasible to develop an infrastructure that 

supports community engagement in clinical services research through collaboration across NIH centers and the sharing of responsibilities for infrastructure 

development, conceptual frameworks, and pilot studies

Applications of Principles of Community Engagement: Interventions developed by CHIC are designed to meet research standards for effectiveness and 

community standards for validity and cultural sensitivity The engagement 

process of first forming the partnership between the convening academic 

researchers and the community organizations and then deciding on health 

priorities together demonstrates Principle 5, and knowledge of community 

needs demonstrates Principle 2 Community participation demonstrates 

Principle 3, and the convener’s flexibility in meeting the needs of the community demonstrates Principle 8 After four tracer conditions were established 

(depression, violence, diabetes, and obesity), the CHIC presented four areas 

for development of research capacity in line with several of the community 

engagement principles: public participation in all phases of research (Principle 

5), understanding community and organizational context for clinical services 

interventions (Principles 2 and 3), practical methods for clinical services trials (Principle 8), and advancing health information technology for clinical 

services research (Principle 7)

References

Jones L, Wells K Strategies for academic and clinician engagement in 

community-participatory partnered research JAMA 2007;297(4):407-410
70

Wells KB, Staunton A, Norris KC, Bluthenthal R, Chung B, Gelberg L, et al 

Building an academic-community partnered network for clinical services 

research: the Community Health Improvement Collaborative (CHIC) Ethnicity 

and Disease 2006:16(1 Suppl 1):S3-17

Website

http://haafiiorg/HAAF_s_Historyhtml
71

5. HEALING OF THE CANOE

Background: The Suquamish Tribe is a federally recognized tribe that resides 

on the Port Madison Indian Reservation in the rural Puget Sound area of 

Washington state Of the tribe’s more than 800 members, approximately 350 

live on the reservation The University of Washington’s Alcohol and Drug 

Abuse Institute and the Suquamish Tribe have a partnership that began when 

the director of the tribe’s Wellness Program inquired about the possibility 

of collaborating on the development of culturally relevant interventions on 

substance abuse in the community At the same time, NIH’s National Center 

on Minority Health and Health Disparities had called for three-year planning 

grants for CBPR with communities to address issues of health disparities 

Following approval by the Tribal Council, an application was submitted and 

subsequently granted The Healing of the Canoe (HOC) set out to reduce health 

disparities by (1) conducting assessments of community needs and resources; 

(2) identifying and prioritizing the health disparities of greatest concern to 

the community; (3) identifying strengths and resources already in the community that could be used to address concerns; (4) developing appropriate, 

community-based, and culturally relevant interventions; and (5) pilot testing 

the interventions

Methods: The project used CBPR and tribal-based research approaches, the 

Community Readiness model (Pleasted et al, 2005), interviews with key stakeholders, and focus groups from four populations identified by the Suquamish 

Cultural Cooperative (SCC) and the researchers: Elders, youth, service providers, and other interested community members recruited through flyers, word 

of mouth, and personal recommendations

Results: Key stakeholders and focus group participants identified several 

behavioral health issues of concern Of particular concern were prevention 

of substance abuse among youth and the need for youth to have a sense of 

tribal identity and a sense of belonging to the community Participants identified three strengths/resources in their community that they thought would 

be critical to addressing the areas of concern: the tribal Elders, tribal youth, 

and Suquamish culture and traditions

Comments: The findings from this community assessment were used to develop 

a culturally grounded curriculum for Suquamish youth called “Holding Up Our 

Youth” that incorporated traditional values, practices, teachings, and stories 
72

to promote a sense of tribal identity and of belonging in the community The 

result was an intervention that uses the canoe journey as a metaphor, providing 

youth with the skills needed to navigate through life without being pulled off 

course by alcohol or drugs, with culture and tradition serving as both anchor 

and compass (Pleasted et al, 2005; Thomas et al, 2010)

Applications of Principles of Community Engagement: The HOC project, 

by asking the community to identify its key health issues, demonstrates 

Principle 4, which states that communities need to “own” the issues, name 

the problems, identify action areas, plan and implement action strategies, 

and evaluate outcomes Principle 7, which emphasizes the need to build on 

the capacity and assets of the community, is also evident in the project as it 

sought to identify the strengths and resources within the community True 

partnership, as stressed in Principle 5, is evident at both the macro and micro 

levels in the HOC A tribe member with a master’s degree in social work is 

part of the research team and a coinvestigator Following the completion 

of stakeholder interviews and focus groups, the HOC submitted a report to 

the SCC for review, feedback, suggestions, and approval, all in accordance 

with Principle 8, which states that principal investigators must be prepared 

to release control to the community Finally, the foundation that was set by 

including the Suquamish Tribe in all aspects of the HOC project allowed for 

continued collaboration over time, in synchrony with Principle 9, long-term 

commitment by the engaging organization

References

Pleasted BA, Edwards RW, Jumper-Thurman P Community readiness: a 

handbook for successful change. Fort Collins (CO): Tri-Ethnic Center for 

Prevention Research; 2005

Thomas LR, Donovan DM, Sigo RLW Identifying community needs and 

resources in a native community: a research partnership in the Pacific northwest International Journal of Mental Health and Addiction 2010;8(2):362-373

Websites

http://adaiwashingtonedu/canoe/historyhtm

wwwwcsaporg/Events/PDF/CR%20Handbook%20SSpdf
73

6. FORMANDO NUESTRO FUTURO/SHAPING OUR FUTURE

Background: Formando Nuestro Futuro/Shaping Our Future (Formando) is 

a CBPR project focused on type 2 diabetes within the Hispanic farmworker 

communities in southeastern Idaho In Idaho and elsewhere in the US, 

Hispanic farmworkers are at risk for many health conditions This effort, 

which involved Idaho State University, evolved out of the Hispanic Health 

Project (HHP), a needs assessment survey conducted in 1998–1999, a review 

of diabetes charts at a community health center performed in 2000, and a 

binational ethnographic project conducted in 2001 Interestingly, there was a 

discrepancy between the community health clinic’s estimate of the magnitude 

of the diabetes problem and the farmworkers’ estimate

Methods: The project used CBPR approaches that employed needs assessment 

and qualitative and quantitative methods In 2001, to uncover the true effect 

of diabetes in the farmworker community, the HHP engaged in a binational 

ethnographic study of families that were split between Guanajuato, Mexico, 

and southeastern Idaho A team of university researchers, promotores (community health workers), and students interviewed families in Guanajuato 

and southeastern Idaho

Results: Some individuals described causes of diabetes that are congruent with 

the medical literature: herencia (heredity), mala nutrición (poor nutrition), 

and gordura (obesity) However, other individuals attributed their diabetes 

to such causes as susto (fright), coraje (anger), or preocupaciónes (worries) 

Thematic analysis of the interviews demonstrated that ideas about diabetes 

were linked to ideas of personal susceptibility; having diabetes was a stigmatized condition that connoted weakness Individuals with diabetes were 

seen as weaker and vulnerable to being shocked and physically harmed by 

situations that others could withstand

Comments: In 2004, Formando used the results from the ethnographic project to create a dialogue between the health care 

workers and the community of farmworkers Currently, promotores 

visit each family once or twice a year to conduct interviews and 

collect data on biomarkers of diabetes A series of educational 

modules is being presented at each home visit throughout the 

five-year study These modules are based on the questions that 

the participants had during the previous round of visits from the 

Currently, promotores visit each 

family once or twice a year to 

conduct interviews and collect 

data on biomarkers of diabetes.
74

promotores In this way, the educational component of the intervention builds 

continuously on the questions and previous lessons that the families have had 

The long-term commitment to using the CBPR approach in these agricultural 

communities is an effective way to engage in health research and to establish 

real and meaningful dialogue with community members

Applications of Principles of Community Engagement: Uncovering the hidden 

health problems of the Hispanic farmworker families requires researchers to 

use Principle 2, which emphasizes the need to become knowledgeable about 

the community’s culture, economic conditions, and other factors The HHP’s 

success in working continuously with the community of southeastern Idaho 

farmers is evidence of its long-term commitment to community engagement 

(Principle 9) and to its ability to establish relationships and work with existing 

leadership (Principle 3) Finally, the process by which the Formando project 

evolved and the development of educational modules based on a specific family’s questions about diabetes is illustrative of Principle 8, which stipulates that 

an engaging organization must be prepared to release control of interventions 

and be flexible enough to meet a community’s changing needs

Reference

Cartwright E, Schow D, Herrera S, Lora Y, Mendez M, Mitchell D, et al Using 

participatory research to build an effective type 2 diabetes intervention: the 

process of advocacy among female Hispanic farmworkers and their families 

in Southeast Idaho Women and Health 2006;43(4):89-109

Website

wwwisuedu/~carteliz/publicationshtm
75

7. IMPROVING AMERICAN INDIAN CANCER SURVEILLANCE AND DATA 

REPORTING IN WISCONSIN

Background: In 2002, Spirit of EAGLES, a Special Populations Network program funded by the National Cancer Institute to address comprehensive cancer 

control through partnerships with American Indian communities, and its partners submitted a letter of intent in response to an invitation by the Great Lakes 

Inter-Tribal Council After the Wisconsin Tribal Health Directors’ Association 

had reviewed the letter, Spirit of EAGLES and its partners were invited to 

prepare a full proposal for submission as part of the larger Great Lakes Native 

American Research Center for Health grant proposal to NIH and the Indian 

Health Service Following scientific review, this cancer surveillance research 

study was funded and conducted through a subcontract to Spirit of EAGLES

Initially, the project staff spent significant time traveling and meeting with 

the director and staff of each American Indian tribal and urban health clinic 

in the state Eight of the 11 Wisconsin tribes and one urban health center 

agreed to partner in the project These nine partners decided that Spirit of 

EAGLES and the academic staff of the University of Wisconsin Paul B Carbone 

Comprehensive Cancer Center in Madison should be responsible for the coordination of this large, multisite project The clinics agreed to participate in 

each step of the research study and to audit the cancer cases in their records 

Funds were provided to each participating clinic to help offset the demands on 

their staff time All partners agreed to a core set of questions to be answered 

by abstracting data from clinic records, but the clinics could include additional 

questions specific to their community

Methods: The project had two phases: (1) a community-specific phase to 

provide each participating American Indian health clinic with a retrospective 

profile of its cancer burden, and (2) a statewide phase in which all the cases 

identified by the individual health clinics were matched with the state cancer 

registry and an aggregate report was prepared

Project staff taught staff members at the American Indian clinics how to 

abstract data; after abstraction, the data were analyzed at the Great Lakes 

Tribal Epidemiology Center Spirit of EAGLES and staff at the center drafted 

an individual report for each community that described its cancer burden 

American Indian health directors, clinic staff, and project staff met to discuss 

and interpret findings Final, clinic-specific reports were presented to each 
76

clinic Presentations were made to health boards or tribal government committees as requested

During the second phase, staff from the Wisconsin Cancer Reporting System 

matched cancer cases to the state registry and provided a de-identified database to tribal epidemiology center staff, who analyzed the aggregate data 

At the time of publication, a draft report of the aggregate data and matches 

had been developed and presented for review and input at a meeting of the 

Wisconsin Tribal Health Directors’ Association The final aggregate report 

was to be disseminated to each participating community; each community 

would receive a report of the match between the cancer cases identified by 

its clinic and those identified by the Wisconsin Cancer Reporting System

Results: Assessing the local cancer burden of American Indian communities 

in Wisconsin and improving the accuracy of the state American Indian cancer 

data necessitated multisite partnerships Project leads embraced and used the 

diversity of backgrounds, skills, and experience of the partnering institutions

Comments: This project demonstrates the successful application 

of CBPR in a complex, multisite project with multiple partners 

The approach developed reflected the time, availability, and skills 

of all partners; it was acceptable to all those involved and not 

unduly burdensome to any one individual or group The project’s 

success is measured not only in terms of improving the accuracy 

of cancer data for American Indians in Wisconsin but also by the 

ongoing, deeper relationships that were formed At the time of 

publication, an independent evaluation of the project was being 

conducted, and new collaborations were under way

Applications of Principles of Community Engagement: This project, a CBPR 

effort among diverse partners, adheres to Principle 3, which asks organizers 

of community engagement to establish relationships and work with existing 

structures Working with multiple sites through several organizations within 

a community allows organizers to form a true partnership, as stressed by 

Principle 5 By using CBPR, the project acknowledges Principle 2, which 

stresses the importance of understanding the community’s perceptions of 

those initiating the engagement activities This is of utmost importance 

because of the history of racism suffered by American Indian communities 

This project demonstrates the 

successful application of CBPR in 

a complex, multisite project with 

multiple partners.
77

and the mistreatment of some American Indians by researchers, which has 

fostered mistrust of researchers The researchers also circumvented mistrust 

by putting extra emphasis on ways to deepen trust between partners One 

example was the researchers’ return of raw data to the health directors and 

clinic staff for interpretation; this allowed the clinic personnel to give unique 

perspectives on the data, and some community-specific cancer interventions 

were developed using their insights In addition, by sharing the data with all 

the different clinics, the project reflected the clinics’ diversity, as stressed in 

Principle 6 Finally, through its four years of partnership and the potential 

for more projects in the future, this program demonstrates Principle 9, which 

states that long-term commitment is required for community engagement to 

truly succeed

Reference

Matloub J, Creswell PD, Strickland R, Pierce K, Stephenson L, Waukau J, et 

al Lessons learned from a community-based participatory research project 

to improve American Indian cancer surveillance Progress in Community 

Health Partnerships: Research, Education, and Action 2009;3(1):47-52

Websites

wwwcancerwiscedu/uwccc/outreachasp

http://mayoresearchmayoedu/cancercenter/spirit_of_eaglescfm
78

8. CHILDREN AND NEIGHBORS DEFEAT OBESITY/LA COMUNIDAD 

AYUDANDO A LOS NIÑOS A DERROTAR LA OBESIDAD (CAN DO HOUSTON)

Background: After Men’s Fitness magazine named Houston the “Fattest City 

in America” in 2005, the Office of the Mayor initiated the Mayor’s Wellness 

Council (MWC) to encourage and motivate Houstonians to eat healthfully and 

engage in regular physical activity The following year, the MWC created the 

Houston Wellness Association (HWA), a nonprofit association that endeavored 

to engage businesses and the wellness industry in efforts to increase the wellness of all Houston residents Through informal networks of HWA and MWC 

members, momentum and interest began to grow, and a large consortium of 

stakeholders, including city services, experts in health disparities and childhood obesity, pediatricians, universities, and community programs, coordinated 

efforts to tackle childhood obesity From this collaboration, CAN DO Houston 

(Children And Neighbors Defeat Obesity; la Comunidad Ayudando a los Niños 

a Derrotar la Obesidad) was created as a comprehensive, community-based 

childhood obesity prevention program

Methods: CAN DO Houston stakeholders chose the city’s Sunnyside and 

Magnolia Park neighborhoods to be the pilot sites for the program They then 

selected an elementary school and park within each neighborhood to serve 

as anchors for the program With the locations finalized, the stakeholders 

researched the available programs in the Houston area that addressed childhood obesity They posted a database of more than 60 programs online so the 

participants in the program could become aware of and use them Subsequently, 

interviews were conducted with key informants, including the school principals, park managers, physical education teachers, staff of the Metropolitan 

Transit Authority of Harris County, and police officers, to prioritize the needs 

for each community Additionally, CAN DO Houston held multiple focus groups 

with parents from Sunnyside and Magnolia Park Interviewees and the focus 

group members were asked to describe both strengths and barriers in their 

communities relative to being physically active, accessing good nutrition, and 

developing healthy minds They also were asked to identify and prioritize 

possible initiatives

Results: The findings showed the unique strengths within each community 

as well as the specific challenges that the program initiatives could address 

For example, in Magnolia Park, participants indicated that children had good 
79

access to resources for healthy eating, and in Sunnyside the participants indicated that children were engaging in more than the recommended 60 minutes 

of moderate-to-vigorous activity each day The primary barrier identified in 

Magnolia Park was the lack of physical activity; in Sunnyside, it was the lack 

of education on nutrition for the children and parents With this information, 

the CAN DO Houston program was able to tailor specific interventions for 

each community

The interviews and focus groups in Magnolia Park revealed a safety 

and logistical problem that was contributing to the underuse of the 

free after-school program in the city park The park was only 04 

miles from the elementary school, but a busy four-lane street and 

a bayou prevented most parents from allowing their children to 

walk to it To address the problem of safe access, CAN DO Houston 

partnered with the park recreation staff and arranged for them 

to conduct an after-school program at the school twice per week 

The park staff led the activities, and CAN DO Houston provided 

volunteers to assist the park staff and supervise the students More 

than 80 students signed up for the program Because of the pilot’s success, 

the school district agreed to provide bus transportation between the school 

and the park during the 2009–2010 school year

In Sunnyside, CAN DO Houston coordinated a monthly wellness seminar to 

educate parents on good nutrition and various wellness topics In addition, it 

offered tours of grocery stores that focused on how to buy healthy foods on a 

budget A nutrition carnival was hosted during the park’s after-school program, 

and the project provided the park with supplies to incorporate education on 

nutrition into this program

Comment: The pilot initiative of CAN DO Houston successfully formed a 

consortium of people and organizations interested in addressing childhood 

obesity that continues to link Houston neighborhoods with resources that can 

be used to address the unique challenges that these communities face CAN 

DO demonstrates that, through the use of existing resources, implementing 

a successful initiative on the prevention of childhood obesity in an urban 

setting is feasible even with minimal funding

Because of the pilot’s success, 

the school district agreed to 

provide bus transportation 

between the school and the park 

during the 2009–2010 school 

year.
80

Applications of Principles of Community Engagement: More than 70 organizations participated in the development of the CAN DO Houston pilot 

program, establishing a broad collaboration of community members, institutions, organizations, and local government Uniting so many groups reflects 

Principle 2, which asks organizers of community engagement to establish 

relationships and work with existing leadership structures The implementers 

of CAN DO Houston coordinated various activities to promote healthy living, including after-school programs, grocery store tours, wellness seminars, 

cooking classes, and staff wellness clubs, all on the basis of the input and 

priorities of community members By implementing the initiatives chosen by 

the community through the existing community organizations and resources, 

CAN DO Houston provides opportunities for partner ownership, consistent 

with Principle 4, which stresses that no external entity should assume that it 

can bestow on a community the power to act in its own self-interest Finally, 

engaging and listening to the communities and allowing them to prioritize 

the initiatives of the program fulfills Principle 8, which counsels the engaging 

organization to be prepared to relinquish control of actions to the community

Reference

Correa NP, Murray NG, Mei CA, Baun WB, Gor BJ, Hare NB, et al CAN DO 

Houston: a community-based approach to preventing childhood obesity 

Preventing Chronic Disease 2010;7(4):A88

Website

http://cctsuthtmcedu/ccts-services/can-do-houston
81

9. THE DENTAL PRACTICE-BASED RESEARCH NETWORK

Background: Practice-based research networks (PBRNs) are consortia of 

practices committed to improving clinical practice Operating internationally since 2005, the Dental Practice-Based Research Network (DPBRN) is 

a collaborative effort of Kaiser Permanente Northwest/Permanente Dental 

Associates in Portland, Oregon; Health Partners of Minneapolis, Minnesota; 

University of Alabama at Birmingham; University of Copenhagen; Alabama 

Dental Practice Research Network; and clinicians and patients in Oregon, 

Washington, Minnesota, Florida, Alabama, Georgia, Mississippi, Norway, 

Sweden, and Denmark

Methods: DPBRN began by obtaining patient input during feasibility/pilot 

testing of certain studies, then progressed to a study that formally included 

patient perceptions, and later made plans for a community advisory board 

Additionally, patient representatives serve on an advisory committee managed 

by the main funder of DPBRN activities, the National Institute of Dental and 

Craniofacial Research

Results: As different parties became familiar with each other’s priorities, they 

were able to establish common ground and carry out successful collaborations DPBRN has provided a context in which researchers and community 

clinicians collaborate as equals, and in keeping with the basic principles of 

CBPR, it engages patients as well DPBRN practitioner-investigators and their 

patients have contributed to research at each stage of its development, leading 

to improvements in study designs and customization of protocols to fit daily 

clinical practice At the time of publication, 19 studies had been completed or 

were ongoing The studies include a broad range of topic areas, enrollments, 

and study designs

Comments: DPBRN practitioners and patients from diverse settings are partnering with academic clinical scientists to improve daily clinical practice and 

meet the needs of clinicians and their patients PBRNs can improve clinical 

practice by engaging in studies that are of direct interest to clinicians and 

their patients and by incorporating findings from these studies into practice 

Patients’ acceptance of these studies has been very high
82

Applications of Principles of Community Engagement: The DPBRN exemplifies several principles of community engagement For example, community 

practitioners are coming together with academicians to develop and answer 

relevant research questions that can directly affect daily clinical practice By 

engaging dentists in private practice, the network is able to reach the site of 

dental care for concentrated groups of patients and to conduct research that 

spans the geographic, cultural, social, and rural/urban diversity of different 

patient populations This ability to connect with different groups is congruent 

with the diversity required by Principle 6 Researchers are partnering with 

the DPBRN in a way that allows for practitioners in the community, who 

traditionally are outside of academic institutions, to participate in all stages 

of research (Principle 5) This can not only close the gap between academic 

and community practices but also empower the dentists to name the research 

questions and participate in the quest for solutions This acknowledges 

Principle 4, which reminds researchers that no external entity can bestow on 

a community the power to act in its own self-interest

References

Gilbert GH, Williams OD, Rindal DB, Pihlstrom DJ, Benjamin PL, Wallace MC 

The creation and development of the dental practice-based research network 

Journal of the American Dental Association 2008;139(1):74-81

Makhija S, Gilbert GH, Rindal DB, Benjamin PL, Richman JS, Pihlstrom DJ 

Dentists in practice-based research networks have much in common with 

dentists at large: evidence from the Dental Practice-Based Research Network 

General Dentistry 2009;57(3):270-275
83

10. DIABETES EDUCATION & PREVENTION WITH A LIFESTYLE INTERVENTION 

OFFERED AT THE YMCA (DEPLOY) PILOT STUDY

Background: With its exceptional reach into diverse US communities and 

long history of implementing successful health promotion programs, the 

YMCA is a capable community partner Over a period of four years, the YMCA 

of Greater Indianapolis participated with researchers at Indiana University 

School of Medicine (IUSM) to design, implement, and evaluate a group-based 

adaptation of the highly successful Diabetes Prevention Program (DPP) lifestyle 

intervention This project, DEPLOY, was conducted to test the hypotheses that 

wellness instructors at the YMCA could be trained to implement a group-based 

lifestyle intervention with fidelity to the DPP model and that adults at high risk 

for developing diabetes who received this intervention could achieve changes 

in body weight comparable to those achieved in the DPP

Methods: DEPLOY, a matched-pair, group-randomized pilot comparative 

effectiveness trial involving two YMCA facilities in greater Indianapolis, 

compared the delivery of a group-based DPP lifestyle intervention by the 

YMCA with brief counseling alone (control) The YMCA, which was engaged 

before the development of the research grant proposal, collaborated with 

researchers at IUSM throughout the study Research participants were adults 

who attended a diabetes risk-screening event at one of two semi-urban YMCA 

facilities and had a BMI (kg/m2) greater than 24, two or more risk factors for 

diabetes, and a random capillary blood glucose concentration of 110–199 mg/

dL Multivariate regression was used to compare between-group differences 

in changes in body weight, blood pressures, hemoglobin A1c (glycosylated 

hemoglobin), total cholesterol, and HDL (high-density lipoprotein) cholesterol 

after six and 12 months

Results: Among 92 participants after six months, body weight 

decreased by 60% in intervention participants and 20% in controls Intervention participants also had greater changes in total 

cholesterol These significant differences were sustained after 12 

months, and adjustment for differences in race and sex did not 

alter the findings

Comments: With more than 2,500 facilities nationwide, the YMCA is a promising channel for wide-scale dissemination of a low-cost model for preventing 

diabetes by changing lifestyles

Among 92 participants after six 

months, body weight decreased 

by 6.0% in intervention 

participants and 2.0% in controls.
84

Applications of Principles of Community Engagement: Bringing health 

promotion activities to members of the community often requires mobilizing the community’s existing assets, both people and institutional resources, 

as described in Principle 7 In line with Principles 3, 4, 5, and 7, the YMCA 

was engaged before the development of the research grant proposal, and 

it collaborated on the study design, approach to recruiting, delivery of the 

intervention, development of measures, interpretation of results, and dissemination of findings DEPLOY demonstrates how intensive programs designed 

to change lifestyles can be more sustainable when health care centers engage 

established social institutions like the YMCA

Reference

Ackermann RT, Finch EA, Brizendine E, Zhou H, Marrero DG Translating the 

Diabetes Prevention Program into the community The DEPLOY pilot study 

American Journal of Preventive Medicine 2008;35(4):357-363
85

11. PROJECT DULCE

Background: Diabetes management programs have been found to improve 

health outcomes, and thus there is a need to translate and adapt them to 

meet the needs of minority, underserved, and underinsured populations 

In 1997, a broad coalition of San Diego County health care and communitybased organizations developed Project Dulce (Spanish for “sweet”) to test the 

effectiveness of a community-based, culturally sensitive approach involving 

case management by nurses and peer education to improve diabetes care 

and elevate health status among a primarily Latino underserved community 

in Southern California Partners included the San Diego Medically Indigent 

Adult program and San Diego County Medical Services

Methods: The goals of the project are to meet the American Diabetes 

Association’s standards of care and to achieve improvements in HbA1c (glycosylated hemoglobin), blood pressure, and lipid parameters A bilingual 

team, consisting of a registered nurse/certified diabetes educator, a medical 

assistant, and a dietitian, travels to community clinics to see patients up to 

eight times per year, then enters patient-specific data into a computer registry 

that generates quarterly reports to guide future care In addition to having 

one-on-one clinic visits with the Dulce team, patients are encouraged to participate in weekly peer education sessions

At each clinic, “natural leaders” are identified out of the patient population 

with diabetes and trained to be peer educators or promotores. The training 

consists of a four-month competency-based and mentoring program that 

culminates with the promotor providing instruction in concert with an experienced educator

The instructors use a detailed curriculum in teaching the weekly sessions in 

the patients’ native language The classes are collaborative, including interactive sessions in which the patients discuss their personal experiences and 

beliefs Emphasis is placed on overcoming cultural factors, such as fear of 

using insulin, that are not congruent with self-management

Results: Project Dulce’s first group showed significant improvement in HbA1c, 

total cholesterol, and LDL (low-density lipoprotein) cholesterol compared 

with chart reviews of patients having similar demographics from the same 
86

clinics over the same time period Participants’ belief that personal control over their health was possible and that contact 

with medical service providers was important in maintaining 

health increased The success of the initial program has led to 

the creation of modified offshoots to address the diabetes-related 

needs of African American, Filipino, and Vietnamese communities In 2008, Project Dulce added the care management program 

of IMPACT (Improving Mood-Promoting Access to Collaborative 

Treatment) to address the problem of depression among patients 

at three community clinics serving a low-income, predominantly 

Spanish-speaking Latino population Up to 33% of patients tested positive for 

symptoms of major depression upon entering the program, and intervention 

resulted in a significant decline in the depression identification scores

Comments: The ability to adapt Project Dulce to new communities and new 

components attests to its potential as a vehicle to administer care to underserved populations

Applications of Principles of Community Engagement: Project Dulce has 

been shown to help patients overcome many cultural barriers to care that 

can result in poor adherence to medical advice A key to the program is the 

identification and training of individuals within the community to lead the 

intervention’s interactive educational component By facilitating the transformation of patients into peer educators, Project Dulce mobilizes the community’s 

existing assets and incorporates Principle 7, which stresses capacity building for achieving community health goals Creating a peer education group 

coupled with a bilingual/bicultural nursing team illustrates the true partnership prescribed by Principle 5, and it is a model for community engagement 

that can be modified appropriately to reflect cultural diversity, as stressed 

in Principle 6 After initial success within the Latino community, Project 

Dulce has been able to adapt its curriculum and group education approach 

to address the needs of other communities At the time of publication, it had 

programs in eight languages These adaptations respond to the diversity of 

San Diego County and are congruent with Principle 9, which emphasizes that 

a long-term commitment is required to improve community health outcomes

The success of the initial 

program has led to the creation 

of modified offshoots to address 

the diabetes-related needs of 

African American, Filipino, and 

Vietnamese communities.
87

References

Gilmer TP, Philis-Tsimikas A, Walker C Outcomes of Project Dulce: a culturally specific diabetes management program Annals of Pharmacotherapy 

2005;39(5):817-822

Gilmer TP, Roze S, Valentine WJ, Emy-Albrecht K, Ray JA, Cobden D, et al 

Cost-effectiveness of diabetes case management for low-income populations 

Health Services Research 2007;42(5):1943-1959

Philis-Tsimikas A, Walker C, Rivard L, Talavera G, Reimann JO, Salmon M, et 

al Improvement in diabetes care of underinsured patients enrolled in Project 

Dulce: a community-based, culturally appropriate, nurse case management 

and peer education diabetes care model Diabetes Care 2004;27(1):110-115

Website

http://wwwscrippsorg/services/diabetes/project-dulce
88

12. DETERMINANTS OF BRUSHING YOUNG CHILDREN’S TEETH: 

IMPLICATIONS FOR ANTICIPATORY BRUSHING GUIDANCE

Background: The roles played by health beliefs and norms, standards, and 

perceived self-efficacy have been largely untapped in studies of tooth-brushing 

behavior Rural parents with limited incomes are more likely to be young and 

geographically isolated than their urban counterparts, and thus these rural 

parents might be less knowledgeable about where to turn for advice about 

oral health or to obtain oral health services Moreover, even if parents are 

aware of and have access to resources for their children, rural parents might 

avoid using them, preferring to “get by” on their own or with the help of 

family members Utilization data show that, overall, rural children are less 

likely than children living in other areas to use dental services overall and 

that rural parents are more likely to report the purpose of the last dental visit 

as something “bothering or hurting” their children

Methods: Researchers from the University of Washington included parents and 

community-based health professionals in each step of the study design and data 

collection Parents were interviewed as expert informants to elucidate a diverse 

set of viewpoints regarding the value and ease of brushing young children’s 

teeth Study protocols and the interview guide were reviewed, revised, and 

approved by a steering committee consisting of seven community residents, 

including five professionals in early childhood health or education and two 

low-income mothers with young children Interviews were conducted by three 

paid community residents trained by the study investigators

Results: Just under two-thirds (26 of 41) of the parents who reported the age 

at which they began brushing their child’s teeth said it was before the child’s 

first birthday No single explanation emerged as a majority reason for initiating 

brushing The most common reason was an external cue, such as the eruption of the child’s first tooth Other common reasons reflected health beliefs, 

followed by normative expectations, including advice from early childhood 

educators, health professionals, or peers

Nearly all parents (91%) thought the recommendation to brush a child’s teeth 

twice a day was realistic However, only slightly more than half (55%) reported 

achieving this goal Parents who achieved twice-daily brushing were more 

likely than those who did not achieve this standard to accurately discuss 
89

milestones in child development, children’s oral health needs, and specific 

skills to engage the child’s cooperation The most common barriers to brushing, cited by 89% of all parents, were lack of time and an uncooperative child

In summary, the study found that determinants of parents brushing their 

children’s teeth vary For this reason, rural children would benefit from simple 

interventions to encourage an early and regular habit of tooth brushing by 

their parents Guidance given to parents about the oral health of their children 

should include discussion of ways to overcome the challenges identified in 

the study

Comments: Because parents participated in the advisory board as expert 

informants on tooth brushing and served as study designers, data collectors, 

and study participants, new knowledge was generated

Applications of Principles of Community Engagement: Principle 6 emphasizes that all aspects of community engagement must recognize and respect 

community diversity; this research project demonstrates this principle by 

acknowledging that the determinants of brushing the teeth of one’s children 

vary By going into the community and learning about the community’s norms 

and values, the researchers were also demonstrating Principle 2

Reference

Huebner CE, Riedy CA Behavioral determinants of brushing young children’s 

teeth: implications for anticipatory guidance Pediatric Dentistry 2010;32(1):48-55

CONCLUSION

This chapter provided examples of successful community engagement projects 

that took place in a variety of communities, including academic health centers, community-based organizations, churches, and the public health sector 

Only 12 projects were presented here, but the literature now offers many such 

examples However, little has been written about the organizational capacities required to make these efforts successful The next chapter addresses 

the organizational supports necessary for effective community engagement
Managing Organizational Support 

for Community Engagement
93

INTRODUCTION

A great deal has been researched and written on collaborative processes that 

support community engagement, but the literature does not offer a systematic review of how successful organizations provide the structural support 

needed to plan, initiate, evaluate, and sustain collaborative processes that 

produce collective community actions. Butterfoss (2007) states that a convening organization “must have sufficient organizational capacity, commitment, 

leadership, and vision to build an effective coalition” (p. 254). However, there 

is little research concerning these characteristics.

This chapter presents a review of frameworks to help organizations determine 

the capacity they need to support community engagement. It includes a set 

of testable propositions about required capacity. The frameworks have been 

developed by matching the structural capacities required for any endeavor as 

defined by Handler et al. (2001) with the prerequisites for effective community 

engagement identified through: (1) the nine principles of community engagement (Chapter 2), (2) community coalition action theory (CCAT; Butterfoss et 

Chapter 4

Managing Organizational Support for 

Community Engagement

Michael Hatcher, DrPH, David Warner, MD, Mark Hornbrook, MD
94

al., 2009), and (3) the constituency development framework (Hatcher et al., 

2001; Hatcher et al., 2008; Nicola et al., 2000).

THE FRAMEWORKS

Principles of Community Engagement

This document, like the first edition of Principles of Community Engagement, 

provides nine guiding principles for organizations to apply when working 

with community partners. These principles give organizational leaders a 

framework for shaping their own culture, planning engagement, conducting 

outreach, and interacting with communities. However, principles by themselves do not offer an engagement model or process for their application. The 

principles are certainly compatible with existing community mobilization 

processes, such as those outlined by the National Association of County and 

City Health Officials in Mobilizing for Action through Partnership and Planning

(2011), but compatibility per se is not enough. To date, there has been no 

clear guidance on how to organizationally or operationally support the use 

of these nine principles or the array of community mobilization models.

Community Coalition Action Theory

As noted in Chapter 1, Butterfoss et al. (2009) articulated CCAT on the basis 

of research on the collaborative engagements of coalitions. In laying out 

CCAT, they provided 21 practice-based propositions that address processes 

ranging from the formation of coalitions through institutionalization. Like 

the principles of community engagement, however, CCAT does not identify 

the structural capacity and management support required to facilitate and 

guide the processes it recommends.

Among the frameworks used in the synthesis offered in this chapter, CCAT 

occupies a unique and important role because it ties community engagement to theory. In fact, it is a particularly appropriate theoretical framework 

because the CCAT developers are specifically interested in what Butterfoss 

(2007) describes as “formal, multipurpose, and long-term alliances” (p. 42), 

which are distinct from the activities of short-term coalitions that coalesce to 

address a single issue of concern and disband after it is resolved. Although 

CCAT is designed primarily to understand community coalitions, community 
95

engagement is not limited to coalition processes. Even so, CCAT and community engagement have a common focus on long-term relationships, and 

CCAT offers propositions that are clearly relevant for undertaking and sustaining collaborative processes for community engagement. Additionally, 

CCAT addresses the full range of processes from initiation of new collaborative activities to institutionalization of mature relationships. Finally, CCAT 

propositions support the nine principles of community engagement.

Constituency Development

The third framework described here is drawn from the organizational 

practice of constituency development; that is, the process of developing 

relationships with community members who benefit from or have influence 

over community public health actions. Constituency development involves 

four practice elements (Hatcher et al., 2008):

•	 	Know	the	community,	its	constituents,	and	its	capabilities.

•	 Establish	positions	and	strategies	that	guide	interactions	with	constituents.

•	 	Build	and	sustain	formal	and	informal	networks	to	maintain	relationships,	

communicate messages, and leverage resources.

•	 	Mobilize	 communities	 and	 constituencies	 for	 decision	 making	 and	

social action.

This framework provides a parsimonious set of tasks that must be undertaken 

for community engagement. The question we seek to answer is how these 

tasks can be carried out in accordance with the principles of community 

engagement and CCAT. To specify the capacity required to support this effort, 

we use the categories of structural capacity delineated by Handler and colleagues (Handler et al., 2001), which include five kinds of resources: human, 

informational, organizational, physical, and fiscal. In Public Health: What It 

Is and How It Works, Turnock elaborates on these capacities as they apply to 

health systems (2009):

•	 	Human	resources	include	competencies	such	as	leadership,	management,	

community health, intervention design, and disciplinary sciences.
96

•	 	Information	resources	span	data	and	scientific	knowledge,	including	demographic and socioeconomic data, data on health risks and health status, 

behavioral data, data on infrastructure and services, and knowledge-based 

information like that found in the intervention and disciplinary sciences 

that is used to guide health and community actions.

•	 	Organizational	 resources	include	organizational	units	and	missions;	

administrative, management, and service-delivery structures; coordinating structures; communication channels and networks; regulatory or policy 

guidance; and organizational and professional practices and processes.

•	 	Physical	resources	are	 the	work	spaces	and	places,	hardware,	supplies,	

materials, and tools used to conduct business.

•	 	Fiscal	resources	include	the	money	used	to	perform	within	an	enterprise	

area like health as well as the real and perceived economic values accumulated from the outputs of an enterprise. Fiscal resources are seldom 

discussed in literature regarding the health and community engagement 

enterprise within the public sector. The investment of money and time to 

engage communities in public sector processes, however, has many potential 

returns, including leveraging of the resources of partners, development of 

community services that may accrue income for reinvestment, synergistic 

actions that achieve the objectives of an enterprise, increases in social 

capital, and population health improvements that have economic value. 

As with all investments, those who commit to long-term and sustained 

community engagement most often accrue the greatest returns.

EXAMINING THE STRUCTURAL CAPACITY NEEDED 

FOR COMMUNITY ENGAGEMENT

Synthesizing the frameworks described above allows us to identify the 

structural capacity needs of organizations or agencies, coalitions, or other 

collaborative entities that are undertaking community engagement. Synthesis 

starts with the four practice elements of constituency development developed 

by Hatcher et al. (2008). Appendix 4.1 contains a table for each of the four 

practice elements (know the community, establish strategies, build networks, 

and mobilize communities) that sets forth its components in detail. The text 

here touches only on their major points.
97

Practice Element 1: Know the Community

The first practice element is focused on knowing the community’s history and 

experience, its constituents, and their capabilities. In a sense, this practice 

element addresses the intelligence-gathering function behind planning, decision making, and leveraging resources to collaboratively achieve anticipated 

or agreed-upon outcomes with community partners. As depicted in Table 

4.1, this element speaks to the need for a wide range of data types, secure 

reporting and collection systems, human skills and equipment to analyze 

and interpret data, organizational processes to communicate this information 

and foster its use in decision making, and a culture that values communityengaged information gathering and use. The goal is to enable all partners to 

understand diverse viewpoints on community issues and to appreciate the 

range of solutions that may address those issues.

The individuals and groups from communities or organizations undertaking 

engagement activities have differing abilities to assimilate data through their 

respective filters. If understanding is not developed collectively, 

it is often difficult to move to a collective decision or action. All 

but the smallest homogenous communities have multiple layers 

of complexity that require organized, collective ways to obtain 

and understand community information. In brief, understanding 

is rooted in experience, social and cultural perspectives, perceptions of influence, and the ability to act collaboratively within the 

engaging organization and the engaged community. Thus, the task 

of knowing a community must be approached as an organizational function 

and supported with sufficient capacity to collectively undertake this work.

Practice Element 2: Establish Positions and Strategies

To	successfully	address	Practice	Element	2,	structural	capacity	must	be	in	place	

to identify the engaging organization’s priorities regarding community health 

issues as well as any limitations in the organization’s mission, funding, or 

politics that will restrain its ability to address those issues. The development 

of positions and strategies allows an organization to effectively plan its role 

in the community engagement process. In particular, it is critical to be clear 

about the organization’s intentions and its ability to adjust and align its position 

to differing viewpoints and priorities likely to exist within the community. 

An introspective review will examine whether the organization is willing to 

If understanding is not 

developed collectively, it is often 

difficult to move to a collective 

decision or action.
98

adjust its priorities in response to the concerns of the community (i.e., takes 

an open position) or whether it insists on following its own internal priorities 

(a closed position). The answer to this question should drive the engagement 

strategy, and the organization must clearly communicate the degree to which 

it is open to change so that the community can have clear expectations about 

what can be collaboratively addressed.

Structural capacity is also needed to support the examination of external forces. 

The understanding of these forces, like the understanding of internal forces, is 

critical for establishing positions and strategies that facilitate social mobilization and participatory decision making. Another term for the examination of 

external forces would be “external planning.” In particular, it is necessary to 

determine whether the community is capable of participating and whether it 

is ready to take action. If the community lacks capacity, it will be necessary 

to facilitate the development of its capacity. If the community has capacity but 

is not ready to act, strategies will need to be developed to help the community 

better understand the issues and create opportunities for it to act.

When establishing positions through internal and external planning, engagement leaders must consider multiple variables that influence health, including 

social, cultural, epidemiologic, behavioral, environmental, political, and other 

factors. An assessment of these factors will provide insight not only into possible 

targets for health actions but also into competing interests of the community 

and its potential responses to the organization’s positions and strategies. 

Organizational positions should be developed through robust analyses and 

present the organization’s views on the health issue, the range of possible 

solutions to that issue, and the rationale for engaging in collaborative action. 

The organization’s strategy for gaining community support should underlie 

the method of presenting its position; the presentation should be designed 

to stimulate community dialogue and result in a determination of the community’s expectations and the resulting collective position.

It is important to engage the community in this process as early as possible, 

although timing depends on the community’s readiness. Regardless of the situation, the organization’s capacity to analyze, establish, present, and manage 

positions and strategies will either facilitate or hinder the engagement process.

Building and maintaining the structural capacity to perform this work 

requires rigorous attention from engagement leaders. Specific insights into 
99

each capacity component for this practice element are presented in Table 4.2, 

which demonstrates that the structural capacity needs for this practice element	are	closely	aligned	with	those	of	Practice	Element	1.

Practice Element 3: Building and Sustaining Networks

Developing networks of collaborators is the third element in the organizational practice of community engagement. As described by Nicola and 

Hatcher, “developing networks is focused on establishing and maintaining 

relationships, communication channels, and exchange systems that promote 

linkages, alliances, and opportunities to leverage resources among constituent groups” (Nicola et al., 2000). In organizational practice, the development 

and maintenance of networks is a critical function and contributes to many 

organizational practice areas, specifically practices related to most of the 10 

essential public health services identified by CDC 17 years ago (CDC, 1994). 

Effective community engagement networks should have active communication 

channels, fluid exchange of resources, and energetic coordination of collaborative activities among network partners. These targets can be achieved when 

organizations understand, support, and use available network structures. 

Keys	to	success	include	having	the	structural	capacity	to:

•	 	Identify	and	analyze	network	structures	(communication,	power,	and	

resource flow);

•	 Affiliate	with	those	in	existing	networks;

•	 	Develop	and	deliver	ongoing	messages	across	formal	and	informal	communication channels to maintain information flow and coordinated activity;

•	 	Target	communications	and	resources	to	leverage	agenda-setting	processes	

within	a	community	(Kozel	et	al.,	2003;	Kozel	et	al.,	2006a,	2006b);	and

•	 	Establish,	use,	and	monitor	resource	exchange	systems	that	support	network	

interactions and coordinated, collaborative community work.

Organizational leaders and managers must provide ongoing attention to 

building and maintaining the structural capacity to perform this work. The 

key task areas just described are dealt with more specifically in Table 4.3. 

The essential structural capacity needed for this practice element includes the 
100

skills and systems to communicate and relate to people on a personal basis, 

knowledge and understanding of community power structures, and access 

to communication and resource exchange networks.

Practice Element 4: Mobilizing Constituencies

The fourth and final practice element in community engagement is mobilizing 

constituencies,	other	organizations,	or	community	members.	Mobilization	

includes moving communities through the process of dialogue, debate, and 

decision making to obtain their commitment to a collaborative goal; determining who will do what and how it will be done; implementing activities; 

and monitoring, evaluating, adjusting, and reevaluating these activities in a 

cyclical fashion. Engagement leaders must be fully immersed in the building 

and maintaining of the structural capacity to perform this work. A 

key to this practice element is earning the trust required for obtaining community commitment. To this end, the engagement process 

must be honest, and expectations must be clear. Leaders in both the 

community and the engaging organization must be committed to 

meaningful negotiations to resolve any salient issues. Engagement 

efforts will flounder in the absence of transparency and reciprocity in the 

engagement process. Insights on the wide range of human skills, data, management structures, and material resources needed to support this practice 

element are found in Table 4.4.

CONCLUSION

Effective community engagement requires a significant commitment to 

developing and mobilizing the organizational resources necessary to support 

engagement activities. This chapter has attempted a practical synthesis of how 

these frameworks identify the capacity needs of an engaging organization, 

but more work is needed to further develop and validate these capacities and 

their linkages between the propositions of CCAT, community engagement 

principles, and the organizational practice elements presented here. Among 

other considerations, such work should account for the considerable diversity 

that exists among organizations. Regardless, it is hoped that these practicebased observations and insights will be tested and refined and will ultimately 

lead to a greater understanding of how organizations must prepare for optimal 

community engagement.

...the engagement process 

must be honest, and 

expectations must be clear.
101

REFERENCES

Butterfoss FD. Coalitions and partnerships in community health. San Francisco: 

Jossey-Bass; 2007.

Butterfoss	FD,	Kegler	MC.	The	community	coalition	action	theory.	In:	DiClemente	

RJ,	Crosby	RA,	Kegler	MC	(editors).	Emerging theories in health promotion 

practice and research (2nd	ed.,	pp.	237-276).	San	Francisco:	Jossey-Bass;	2009.

Centers	for	Disease	Control	and	Prevention.	Essential public health services. 

Atlanta	(GA):	Centers	for	Disease	Control	and	Prevention;	1994.

Handler	A,	 Issel	M,	Turnock	B.	A	conceptual	 framework	 to	measure	performance of the public health system. American Journal of Public Health 

2001;91(8):1235-1239.

Hatcher	MT,	Nicola	RM.	Building	constituencies	for	public	health.	In:	Novick	

LF,	Morrow	CB,	Mays	GP	(editors).	Public health administration: principles 

for population-based management	(1st	ed.,	pp.	510-520).	Sudbury	(MA):	Jones

and Bartlett; 2001.

Hatcher	MT,	Nicola	RM.	Building	constituencies	for	public	health.	In:	Novick	

LF,	Morrow	CB,	Mays	GP	(editors).	Public health administration: principles for 

population-based management	(2nd	ed.,	pp.	443-458).	Sudbury	(MA):	Jones	

and Bartlett; 2008.

Kozel	CT,	Hubbell	AP,	Dearing	JW,	Kane	WM,	Thompson	S,	Pérez	FG,	et	al.	

Exploring agenda-setting for healthy border 2010: research directions and 

methods. Californian Journal of Health Promotion	2006a;4(1):141-161.

Kozel	C,	Kane	W,	Hatcher	M,	Hubbell	A,	Dearing	J,	Forster-Cox	S,	et	al.	

Introducing health promotion agenda-setting for health education practitioners. 

Californian Journal of Health Promotion	2006b;4(1):32-40.

Kozel	C,	Kane	W,	Rogers	E,	Brandon	J,	Hatcher	M,	Hammes	M,	et	al.	Exploring	

health	promotion	agenda-setting	in	New	Mexico:	reshaping	health	promotion	

leadership. Promotion and Education 2003;(4):171-177.
102

National	Association	of	County	and	City	Health	Officials.	Mobilizing	for	action	

through	planning	and	partnerships	(MAPP).	National	Association	of	County	

and City Health Officials; 2011. Retrieved from http://www.naccho.org/topics/

infrastructure/MAPP/index.cfm.

Nicola	RM,	Hatcher	MT.	A	framework	for	building	effective	public	health	constituencies. Journal of Public Health Management and Practice	2000;6(2):1-10.

Turnock BJ. Public health: what it is and how it works	(4th	ed.).	Sudbury	(MA):	

Jones and Bartlett; 2009.

APPENDIX 4.1 STRUCTURAL CAPACITY TABLES

The four tables listing the structural capacity needed for community engagement are shown here; one table has been constructed for each of the four 

practice elements (know the community, establish strategies, build networks, 

and mobilize communities). Each table includes summarized versions of 

the CCAT propositions and principles of community engagement that are 

relevant to the practice element represented by that table. CCAT propositions 

are displayed side-by-side with the principles to which they correspond. Both 

are numbered in accordance with their order in their original context. (For 

example,	Principle	3	of	our	principles	of	community	engagement	is	consistently identified in these tables as number 3 despite its location in the tables.)

The far-right column describes the structural capacity needed; these requirements are derived by considering the five elements of capacity set forth by 

Handler et al. (2001) in light of the CCAT propositions and engagement principles identified as relevant to each practice element.
103

Table 4.1. Know the Community, Its Constituents, and Its Capabilities1

Reprinted with permission of John Wiley & Sons, Inc.

References: Butterfoss, 2007; Butterfoss et al., 2009.

1

CCAT propositions and the principles of community engagement are numbered in accordance with their order in their original context, 

not according to their position in this table.

Community Coalition Action Theory

Propositions:

3. All stages of coalition development are 

heavily influenced by community context.

4. Coalitions form in response to an opportunity, threat, or mandate.

5. Coalitions are more likely to form when 

the convening group provides technical/

material/networking assistance and 

credibility.

6. Coalition formation is more likely when 

there is participation from community 

gatekeepers.

7. Coalition formation usually begins by 

recruiting a core group of people committed to resolving the issue.

8. More effective coalitions result when 

the core group expands to include participants who represent diverse interest 

groups.

15. Satisfied and committed members will 

participate more fully in the work of the 

coalition.

16. Synergistic pooling of resources promotes effective assessment, planning, 

and implementation.

17. Comprehensive assessment and planning aid successful implementation of 

effective strategies.

Principles of Community 

Engagement Structural Capacity Needed

Principles:

2. Know the community, including 

its economics, demographics, 

norms, history, experience 

with engagement efforts, and 

perception of those initiating 

the engagement activities.

6. Recognize and respect the 

various cultures of a community 

and other factors that indicate 

its diversity in all aspects of 

designing and implementing community engagement 

approaches.

7. Sustainability results from 

identifying and mobilizing 

community assets and from 

developing capacities and 

resources.

9. Community collaboration requires long-term 

commitment.

People Skilled in:

•	 Outreach,	relationship	building,	data	collection	and	analysis,	and	

information development and presentation.

•	 Technical	assistance	and	assessment	of	training	needs	for	organizational formation, planning and implementation of initiatives, 

communication and networking, and other engagement processes.

•	 Situational	analysis	and	identifying	opportunities	for	reciprocity	within	

the community.

Information/Data on:

•	 Community	demographics.

•	 Socioeconomic	status.

•	 Cultural	beliefs,	attitudes,	and	behaviors	regarding	health	and	other	

contextual aspects of community life.

•	 Community	civic,	faith,	business,	philanthropic,	governmental,	and	

other special interest entities — their missions/purpose, assets, and 

opinion leaders.

•	 Physical	attributes	of	the	community.

Organizational Structures to:

•	 Organizational	mission	or	values	statement	that	supports	a	culture	of	

long-term engagement with community partners.

•	 Recognition	and	reward	systems	for	personnel	who	effectively	perform duties of community information development.

•	 Information	systems	to	manage	collection,	storage,	analysis,	and	

reporting of data on the capabilities of community partners; technical 

assistance and training needs for partners to undertake the formation 

of engagements, planning of initiatives, and implementation; development and maintenance of communication channels and networks; 

and opportunities to take part in other engagement processes.

•	 Policies	and	procedures	regarding	collection,	storage,	release,	or	

publication of information, along with privacy and security safeguards.

Fiscal and Physical Support for:

•	 Personnel,	contract,	or	budget	for	providing	information	services.

•	 Budget	for	development	and	distribution	of	information	materials.

•	 Office	space	for	staff	engaged	in	information	services.

•	 Computer	hardware,	communication	devices,	and	other	office	

equipment.
104

Community Coalition Action Theory Principles of Community 

Engagement Structural Capacity Needed

Propositions:

4. Coalitions form in response to an opportunity, threat, or mandate.

7. Coalition formation usually begins by 

recruiting a core group of people committed to resolving the issue.

9. Open, frequent communication creates a 

positive climate for collaborative synergy.

10. Shared and formalized decision-making 

helps make collaborative synergy more 

likely through member engagement and 

pooling of resources.

12. Strong leadership improves coalition 

functioning and makes collaborative 

synergy more likely.

13. Paid staff with interpersonal and 

organizational skills can facilitate the 

collaborative process.

14. Formalized rules, roles, structures, and 

procedures make collaborative synergy 

more likely.

16. Synergistic pooling of resources promotes effective assessment, planning, 

and implementation.

17. Comprehensive assessment and planning aid successful implementation of 

effective strategies.

18. Coalitions that direct interventions at 

multiple levels are more likely to create 

change in community policies, practices, 

and environments. 

Principles:

1.	 Be	clear	about	the	population/

communities to be engaged 

and the goals of the effort.

4. Remember that community 

self-determination is the 

responsibility and right of 

all people who comprise a 

community.

6. Recognize and respect the 

various cultures of a community 

and other factors that indicate 

its diversity in all aspects of 

designing and implementing community engagement 

approaches.

8.	 Be	prepared	to	release	control	

to the community, and be 

flexible enough to meet 

the changing needs of the 

community.

9. Community collaboration requires long-term 

commitment.

People Skilled in:

•	 Information	and	policy	analysis,	strategic	planning	and	strategy	

development, and initiative planning and implementation.

•	 Collaborative	methods	to	work	with	diverse	populations	and	build	

community capacity to analyze and apply information in decision 

making.

•	 Affiliation	and	network	linkage	development,	organizational	formation,	

collaborative leadership, facilitation, and participatory governance.

•	Resource	identification	and	leveraged	resource	management.

•	Communications	development	and	delivery.

Information/Data on:

•	 Populations	potentially	affected	by	positions	under	consideration	and	

influencing factors of socioeconomic, cultural, and other situational/

contextual data.

•	 Population	response	anticipated	based	on	beliefs,	attitudes,	past	

behaviors, and readiness to act and participate.

•	 Opportunities	to	engage	opinion	leaders	in	position	and	strategy	

determination.

•	 Symbols,	physical	location,	institutions,	and	events	likely	to	improve	

engagement.

Organizational Structures to:

•	 Establish	information	systems	to	obtain	formative	information	on	

issues for which community engagement is needed.

•	 Analyze	the	range	of	solutions	or	actions,	unintended	consequences,	

and the opportunities to successfully address the issue(s) where community engagement is intended.

•	 Project	resource	needs	and	potential	ways	to	attract,	leverage,	and	

manage resources.

•	 Determine	organizational	position	and	strategies	to	initiate	community	

dialogue on perceived issues.

•	 Present	positions	and	negotiate	consensus	on	community	actions	or	

what outcomes to achieve.

•	 Recognize	and	reward	personnel	that	effectively	perform	community	

engagement and strategy development duties.

Fiscal and Physical Support for:

•	 Personnel	budget	for	strategic	and	program	planning.

•	 Personnel	budget	for	facilitating	development	of	community	capacity	

to act.

•	 Budget	for	strategic	and	program	planning.

•	 Office	space	for	staff	engaged	in	strategic	and	program	planning.

•	 Communication	and	computer	hardware	and	other	office	equipment	

to support position and strategy development activities.

Table 4.2. Establish Positions and Strategies to Guide Interactions2

Reprinted with permission of John Wiley & Sons, Inc.

References: Butterfoss, 2007; Butterfoss et al., 2009.

2

CCAT propositions and the principles of community engagement are numbered in accordance with their order in their original context, 

not according to their position in this table.
105

Community Coalition Action Theory Principles of Community 

Engagement Structural Capacity Needed

Propositions:

5. Coalitions are more likely to form when 

the convening group provides technical/

material/networking assistance and 

credibility.

6. Coalition formation is more likely when 

there is participation from community 

gatekeepers.

7. Coalition formation usually begins by 

recruiting a core group of people committed to resolving the issue.

8. More effective coalitions result when 

the core group expands to include participants who represent diverse interest 

groups.

9. Open, frequent communication creates a 

positive climate for collaborative synergy.

12. Strong leadership improves coalition 

functioning and makes collaborative 

synergy more likely.

13. Paid staff with interpersonal and 

organizational skills can facilitate the 

collaborative process.

15. Satisfied and committed members will 

participate more fully in the work of the 

coalition.

16. Synergistic pooling of resources promotes effective assessment, planning, 

and implementation.

17. Comprehensive assessment and planning aid successful implementation of 

effective strategies.

Principles:

3. To create community mobilization process, build trust and 

relationships and get commitments from formal and informal 

leadership.

7. Sustainability results from 

identifying and mobilizing 

community assets and from 

developing capacities and 

resources.

9. Community collaboration requires long-term 

commitment.

People Skilled in:

•	 Network	analysis	and	affiliation	processes,	engagement	processes	

that respect diverse populations and viewpoints, collaborative leadership, network formation and ethical management of asymmetrical 

power relationships, resource identification and leveraged resource 

management, and communications development and delivery.

Information/Data on:

•	Network	demographics	and	socioeconomic	status.

•	 Network	cultural	beliefs,	attitudes,	and	behaviors	regarding	health	

and other aspects of community life.

•	Network	structures	and	opinion	leaders	within	these	structures.

•	 Network	“boundary-spanners”	who	provide	linkage	across	population	

and system segments of the community.

Organizational Structures to:

•	 Recognize	and	reward	personnel	who	effectively	perform	community	

engagement network duties.

•	 Identify	and	understand	the	patterns	of	communication,	influence,	

and 

resource flow.

•	 Establish	information	systems	to	manage	and	maintain	trusted	twoway network communication.

•	 Encourage	personnel	to	affiliate	with	formal	and	informal	organizations and groups across the community and leverage those affiliation 

points to support the organization’s network structures (communication, power/influence, and resource flow).

•	 Establish	information	systems	to	support	network	formation	and	affiliation processes, network planning and implementation, and network 

resource identification and leveraged management.

•	 Oversee	communications	and	policy-related	activities	needed	to	leverage resources within the network structure.

•	 Establish,	use,	and	monitor	resource	exchange	systems	that	support	

network interactions and coordinated community collaborative work.

Fiscal and Physical Support for:

•	 Personnel	budget	for	network	development	and	maintenance.

•	 Personnel	budget	to	support	and	reward	personnel	performance	in	

network development and maintenance.

•	 Office	space	for	staff	engaged	in	network	development	and	

maintenance.

•	 Communication	and	computer	hardware	and	other	office	equipment	

to support mobilization activities.

Table	4.3.	Build	and	Sustain	Networks	to	Maintain	Relationships,	Communications,	and	Leveraging	of	Resources3

Reprinted with permission of John Wiley & Sons, Inc.

References: Butterfoss, 2007; Butterfoss et al., 2009.

3

CCAT propositions and the principles of community engagement are numbered in accordance with their order in their original context, 

not according to their position in this table.
106

Table 4.4. Mobilize Communities and Constituencies for Decision Making and Social Action4

Reprinted with permission of John Wiley & Sons, Inc.

References: Butterfoss, 2007; Butterfoss et al., 2009.

4

CCCAT propositions and the principles of community engagement are numbered in accordance with their order in their original context, 

not according to their position in this table.

Community Coalition 

Action Theory

Principles of

Community

Engagement 

Structural Capacity Needed

Propositions:

6. Coalition formation is more likely when 

there is participation from community 

gatekeepers.

7. Coalition formation usually begins by 

recruiting a core group of people committed to resolving the issue.

10. Shared and formalized decision-making 

helps make collaborative synergy more 

likely through member engagement and 

pooling of resources.

11. Conflict management helps create a 

positive organizational climate, ensures 

that benefits outweigh costs, and 

achieves pooling of resources and 

member engagement.

12. Strong leadership improves coalition 

functioning and makes collaborative 

synergy more likely.

13. Paid staff with interpersonal and 

organizational skills can facilitate the 

collaborative process.

14. Formalized rules, roles, structures, and 

procedures make collaborative synergy 

more likely.

15. Satisfied and committed members will 

participate more fully in the work of the 

coalition.

16. Synergistic pooling of resources promotes effective assessment, planning, 

and implementation.

17. Comprehensive assessment and planning aid successful implementation of 

effective strategies.

18. Coalitions that direct interventions at 

multiple levels are more likely to create 

change in community policies, practices, 

and environments.

Principles:

4. Remember and accept that 

community self-determination 

is the responsibility and right 

of all people who comprise a 

community. No external entity 

should assume it could bestow 

to a community the power to 

act in its own self-interest.

5. Partnering with the community 

is necessary to create change 

and improve health.

6. Recognize and respect the 

various cultures of a community

and other factors that indicate 

its diversity in all aspects of 

designing and implementing community engagement 

approaches.

7. Sustainability results from 

identifying and mobilizing 

community assets and from 

developing capacities and 

resources.

8.	 Be	prepared	to	release	control	

to the community, and be 

flexible enough to meet 

the changing needs of the 

community.

9. Community collaboration requires long-term 

commitment.

People Skilled in:

•	 Mobilization	and	engagement	processes,	execution	of	mobilization strategies, initiative planning and implementation, collaborative 

organizational formation and participatory governance, listening, 

appreciating diverse populations and viewpoints, collaborative leadership to ethically manage asymmetric power relationships, resource 

identification, and leveraged resource management, and communications development and delivery.

•	 Technical	assistance	and	training	to	build	partner	capacity	to	participate in community actions.

Information/Data on:

•	 Emerging	or	new	competitive	viewpoints	and	cultural	beliefs,	

attitudes, and behaviors regarding health and other aspects of community life.

•	 Shifts	in	community	structures	and	opinions	of	leaders	within	these	

structures.

•	 Impacts	of	engagement	and	mobilization	efforts

Organizational Structures to:

•	 Collectively	govern	the	collaborative	process	and	communicate	

effectively with community partners.

•	 Establish	information	systems	to	manage	and	maintain	trusted	twoway network communication.

•	 Establish	information	systems	to	support	affiliations	and	mobilization	

process of engagement initiatives, contingency planning to adapt 

implementation of collaborative interventions, and feedback on use 

and management of network resources.

•	 Deliver	technical	assistance	and	training.

•	 Establish	information	systems	to	provide	feedback	loops	to	evaluate	

impacts of engagement and intervention mobilization efforts.

•	 Track	personnel	affiliated	with	formal	and	informal	organizations	and	

groups across the community.

•	 Leverage	affiliation	points	to	support	the	organization’s	network	and	

mobilization activities (communication, power/influence, resource 

flow, and collaborative interventions).

•	 Oversee	communications	and	policy-related	activities	network	and	

mobilization activities.

•	 Manage	resource	exchange	needed	to	accomplish	coordinated	community collaborative work.

•	 Recognize	and	reward	personnel	that	effectively	perform	community	

engagement and social mobilization duties.

Fiscal and Physical Support for:

•	 Personnel	budget	for	managing	and	evaluating	mobilization	activities	

that address active communication, power relationships, resource 

flow and use, and other collaborative processes.

•	 Personnel	budget	to	support	and	reward	personnel	performance	in	

managing and evaluating mobilization activities.

•	Office	space	for	staff	engaged	in	managing	and	evaluating	mobilization	

activities.

•	 Communication	and	computer	hardware	and	other	office	equipment	

to support mobilization activities.
Challenges in Improving Community 

Engagement in Research
109

INTRODUCTION

This chapter addresses common challenges faced in community-engaged 

research, whether that research meets the definition of community-based 

participatory research (CBPR) or falls elsewhere on the spectrum of community engagement efforts These challenges and some approaches for meeting 

them are illustrated with a series of vignettes that describe real-life experiences of partnerships emanating from the Prevention Research Centers (PRC) 

program, the Clinical and Translational Science Awards (CTSA) program, and 

other community-engaged research (CEnR) efforts

CDC funds PRCs in schools of public health and medicine; the first three 

PRCs were funded in 1986 Currently, 37 PRCs are funded across 27 states, 

working as an interdependent network of community, academic, and public health partners to conduct applied prevention research and support the 

wide use of practices proven to promote good health These partners design, 

test, and disseminate strategies that can be implemented as new policies or 

Chapter 5

Challenges in Improving Community 

Engagement in Research

Jo Anne Grunbaum, EdD
110

recommended public health practices For more information on the PRC program, visit wwwcdcgov/prc

The CTSA program began in 2006 with 12 sites funded by the National 

Center for Research Resources, a part of NIH As of publication, the CTSA 

Consortium includes 55 medical research institutions located throughout the 

nation that work together to energize the discipline of clinical and translational 

science The CTSA institutions share a common vision to improve human 

health by transforming the research and training environment in the US 

to enhance the efficiency and quality of clinical and translational research 

Community engagement programs in the CTSAs help foster collaborative and 

interdisciplinary research partnerships, enhance public trust in clinical and 

translational research, and facilitate the recruitment and retention of research 

participants to learn more about health issues in the United States’ many 

diverse populations For more information on the CTSA Consortium, visit 

wwwCTSAweborg

The purpose of this chapter is to address five key challenges in the area of 

community-engaged research:

1 Engaging and maintaining community involvement

2 Overcoming differences between and among academics and the community

3 Working with nontraditional communities

4 Initiating a project with a community and developing a community advisory 

board

5 Overcoming competing priorities and institutional differences

Each vignette describes a challenge faced by a partnership and the actions 

taken and provides pertinent take-home messages The intention is to provide readers with snapshots of community engagement activity during the 

research process Readers are encouraged to contact the authors or refer to 

the references for further information concerning findings and follow-up
111

1. ENGAGING AND MAINTAINING COMMUNITY INVOLVEMENT

Many communities distrust the motives and techniques of research Some 

know of the history of exploitation and abuse in medical research in the 

US, and others may be “burned out” from participation in studies Some 

may have immediate needs that make research seem irrelevant, and some 

may merely lack an understanding of the research enterprise

Thus, when research is involved, the challenges of community engagement 

may be particularly profound The vignettes that follow address some of the 

most common dilemmas in engaging a community in research and maintaining the relationship over time The take-home messages offered at the 

end of each vignette are grounded in the principles of community engagement, as they demonstrate the importance of understanding communities; 

establishing trusting, respectful, equitable, and committed relationships; 

and working with the community to identify the best ways to translate 

knowledge into improved health

A. How do you engage a community in a randomized clinical trial or a drug trial?

Sally Davis, PhD

Challenge

Community-based research does not always allow for full participation of 

the community from start to finish, as is envisioned in the classic CBPR 

model In CBPR, the community often comes up with the research question or issue of interest based on personal experience, but in a randomized 

controlled trial (RCT), the funding agency or investigator generally develops 

the question based on pressing health issues identified from surveillance or 

other data sources A community-based RCT is often an efficacy trial and 

may include many schools or communities across a large geographic area

For example, the PRC at the University of New Mexico conducted an RCT 

on obesity prevention with 16 rural Head Start centers across the state An 

RCT conducted in the traditional way is done in an artificial “laboratory” 

setting within an academic health center or practice setting; an RCT in the 
112

community setting can be just as rigorous but with more flexibility and 

community participation The challenge has been to develop strategies to 

engage the community in the research process within a short period of time 

and with clear communication and agreement

Action Steps

Although the study was conducted in 16 communities and there was little 

time to establish relationships, researchers were able to engage the communities by inviting key partners to participate For example, local grocery 

stores, health care providers, families, Head Start teachers, teaching assistants, and food-service providers were all included This inclusive approach 

ensured participation from a broad array of community members from the 

beginning of the study A memorandum of agreement (MOA) 

was developed that included input from community leaders and 

provided an opportunity for the researchers and the community 

to discuss and agree on roles, responsibilities, and expectations 

Key members of the community (eg, governing officials, school 

administration, and parent groups) and the university researchers 

signed the agreement The MOA includes a clear statement of the 

purpose of the research, burden to the school or individual (the 

amount of time required to participate), benefits to the school (money, equipment, in-kind service), benefits to the academic institution and researchers 

(the opportunity to answer important questions and test interventions), 

needs (space, parental consent, special events, identification of other key 

individuals), and communication issues (regarding scheduling, staff turnover, complaints) The MOA is being used as a guidance document for the 

study Having this agreement in writing is especially helpful when there 

is turnover of key participants, such as school staff or governing officials, 

or when there are new participants who may not be aware of the history 

or purpose of the study or of the roles, relationships, and responsibilities 

agreed upon at the beginning of the research

Take-Home Messages

•	 	Engaging	the	community	in	RCTs	is	challenging	but	possible.

•	 	Engaging	and	seeking	input	from	multiple	key	stakeholders	(e.g.,	grocery	

store owners, health care providers, and families) is an important strategy

This inclusive approach 

ensured participation from 

a broad array of community 

members from the beginning of 

the study.
113

•	 	Collaboratively	developing	an	MOA	can	enhance	communication	and	build	

new partnerships in studies that are restricted by time and are predefined

•	 	An	MOA	can	serve	as	a	valuable	guidance	document	and	useful	 tool	

throughout a study as an agreed-upon point of reference for researchers 

and community members (Davis et al, 1999; Davis et al, 2003)

References

Davis SM, Clay T, Smyth M, Gittelsohn J, Arviso V, Flint-Wagner H, et al 

Pathways curriculum and family interventions to promote healthful eating 

and physical activity in American Indian schoolchildren Preventive Medicine 

2003;37(6 Part 2):S24-34

Davis SM, Going SB, Helitzer DL, Teufel NI, Snyder P, Gittelsohn J, et al 

Pathways: a culturally appropriate obesity-prevention program for American 

Indian schoolchildren American Journal of Clinical Nutrition 1999;69(4 

Suppl):796S-802S

B. How do you overcome historical exploitation?

Sally Davis, PhD, Janet Page-Reeves, PhD, Theresa Cruz, PhD

Challenge

A history of exploitation in rural communities may be manifested in a number of ways In many such communities, structural inequality is evident in 

residents’ geographic isolation, great distance from commercial centers, lack 

of access to services, lack of availability of healthful foods, and poverty, as 

well as frequent turnover of staff in local institutions such as schools and 

health care facilities This reality presents everyday challenges to the researchers at institutions that work in these communities For example, distance, 

weather, and lack of infrastructure pose logistical challenges, and a lack of 

road maintenance, limited communication capacity, and uncertain access to 

food and lodging (necessities that urban residents may take for granted) are 

often problems in rural areas These issues, combined with the problem of 

scheduling around competing priorities in the lives of both researchers and 

community members, are challenges for those living in or working with rural 

communities
114

These challenges do not compare, however, with those created by the historical exploitation of residents in some of these communities In the Southwest, 

where research has too often been conducted in an exploitative manner without the consent and participation of the community, it is extremely difficult 

to develop partnerships between rural communities and researchers Many 

American Indian and Hispanic communities throughout the Southwest have 

been the subjects of research conducted by persons living outside the community who did not engage residents and their communities in the research 

In one multisite study with tribal groups across the United States that began 

in the 1990s, researchers at the University of New Mexico PRC and at four 

other universities were confronted with the challenge of overcoming the 

mistrust of seven tribal communities that had either experienced exploitation 

or heard of examples

Action Steps

Despite the history of violated trust, the PRC was able to develop appropriate 

and meaningful partnerships between researchers and tribal communities 

Together, the partners established and maintained the bidirectional trust 

necessary to develop and implement a successful intervention 

They used a variety of participation strategies to achieve trust For 

example, local customs and cultural constructs were considered in 

formulating the intervention, local advisory councils were formed, 

elders were included as advisors, local community members were 

hired, formative assessment was conducted to determine the feasibility and acceptability of the proposed prevention strategies in local 

terms, approval was sought from tribal and local review boards, 

and local priorities were determined Participation, feedback, and 

collaborative relationships were crucial to engaging these underrepresented communities with a history of exploitation And yet, perhaps 

the most important and most basic strategy was to demonstrate respect and 

inclusion to the fullest extent possible

Take-Home Messages

•	 	Recognize	that	there	may	be	a	history	of	exploitation	in	the	community	

and therefore a distrust of research and researchers

Together, the partners 

established and maintained the 

bidirectional trust necessary 

to develop and implement a 

successful intervention.
115

•	 Employ	a	variety	of	participation	strategies.

•	 Allow	extra	time	for	building	relationships	and	trust.

•	 Seek	approval	from	tribal	or	other	local	review	groups.

•	 Include	local	customs	in	interventions.

•	 	Demonstrate	respect	and	inclusion	to	the	fullest	extent	possible	(Davis	et	

al, 1999; Gittelsohn et al, 2003)

References

Davis SM, Reid R Practicing participatory research in American Indian communities American Society for Clinical Nutrition 1999;69(4 Suppl):755S-759S

Gittelsohn J, Davis SM, Steckler A, Ethelbah B, Clay T, Metcalfe L, et al 

Pathways: lessons learned and future directions for school-based interventions 

among American Indians Preventive Medicine 2003;37(6):S107-S112

C. How do you maintain community engagement throughout the research?

Deborah Bowen, PhD

Challenge

The comedian Woody Allen once said, “Eighty percent of life is showing 

up” That is true in community engagement as well as in life Add to that formula the idea of showing up for the right events — those that are important 

to community priorities — and engagement takes place For example, the 

author’s research group was funded to conduct a feasibility study of using 

rural farm granges as health promotion sites in ranching country Granges are 

rural community organizations that support learning, information exchange, 

social events, and political action for farming and ranching communities The 

feasibility study progressed from initial discussions to collection of formative 

data These data collection efforts were by telephone, and, at first, response 

rates from the actual membership were relatively poor The research group 
116

halted its efforts to collect data and conducted some qualitative research to 

better understand the issues

Action Steps

The researchers found that lack of familiarity with the author’s research 

institute and the people involved might be one barrier to full participation of 

the rural residents and grange members Over the next six months, 

the research institute staff began to attend community and farming 

events, getting to know residents and families and learning what the 

community’s important issues were Research institute staff asked 

about these issues and attended events or supported efforts in the 

farming communities that were not necessarily related to health 

promotion but were key to the farm families in the granges Several 

farm family members became part of the project’s community 

advisory board, giving both advice and direction to the new plans 

for surveys After six months, the research group, together with the 

community advisory board, reinstated the telephone data collection 

efforts, which then achieved a much higher response rate This kind 

of community engagement continued for the three-year project These same 

connections with farm families in granges are still fueling health promotion 

efforts in this area

Take-Home Messages

•	 	Engagement	needs	to	occur	as	the	ideas	for	research	are	being	formed	and	

the procedures are being identified

•	 	Taking	the	community’s	priorities	into	account	increases	the	opportunity	

for engagement

•	 Being	a	regular	presence	in	the	community	may	enhance	research	efforts.

D. How do you engage a community organization as a partner in exploratory 

health research?

Lori Carter-Edwards, PhD, Ashley Johnson, Lesley Williams, Janelle ArmstrongBrown, MPH

The researchers found that lack 

of familiarity with the author’s 

research institute and the people 

involved might be one barrier 

to full participation of the rural 

residents and grange members.
117

Challenge

The John Avery Boys and Girls Club (JABGC), located in the heart of a lowto-lower-middle-income community in Durham, North Carolina, primarily 

serves African American children and their families by providing a variety 

of after-school programs and activities The organization is partnering with 

the Duke Center for Community Research (DCCR) to conduct a qualitative 

exploratory research study to understand children’s influences on the food 

purchasing behaviors of caregivers in the context of food marketing African 

American children have a much higher prevalence of obesity than children 

of other ethnic groups (Skelton et al, 2009) and are more likely than other 

children to receive targeted marketing messages for products associated with 

intake of excess calories (Grier et al, 2010; Kumanyika et al, 2006) The intent 

of this study is to gain information on the local food environment to help 

inform and ultimately to modify policy JABGC had a previous relationship 

with DCCR personnel in the area of program and policy development, but this 

was its first experience serving as a full partner with the DCCR in research

Action Steps

The DCCR and the JABGC have met regularly since the development and funding of the study, which is sponsored by the African-American Collaborative 

Obesity Research Network, a national research network based at the University 

of Pennsylvania through a grant from the Robert Wood Johnson Foundation 

The executive director of the JABGC identified an administrative lead from 

the club to serve as its point person The DCCR faculty lead for the study and 

other researchers frequently visit the JABGC and have established a rapport 

with its entire administrative and programmatic staff The core partners 

hold weekly telephone meetings to address issues related to execution of the 

study During some calls, partners have discussed the data that needed to 

be collected and why, and these discussions helped to dramatically improve 

documentation Regular telephone meetings also helped to clarify job priorities It was important that the DCCR partners understood the work priorities 

of the JABGC staff and the limitations of what could and could not be accomplished during the study

Some of the JABGC administrative staff has changed since the research began, 

but because of the rapport built through the partnership and the existing 
118

mechanisms for communication, the changes have not adversely affected the 

team’s ability to conduct the research Continued communications between 

the DCCR and the JABGC administrative and programmatic staff have been 

key to sustaining organizational relationships

Take-Home Messages

•	 	Establishing	a	collaborative	research	relationship	may	involve	a	different	

level of engagement than a collaborative outreach relationship

•	 	Organizations	have	their	own	responsibilities	that	have	to	be	met	independently of any research

•	 	Communicating	regularly	and	often	to	keep	all	partners	aware	of	priorities	

within the respective institutions is important

•	 	Working	collectively	to	proactively	create	relationships	and	put	procedures	

in place can help sustain the research when the community organization 

staff changes

•	 	It	should	be	understood	that,	despite	the	time	limits	for	research,	partnerships must be flexible

References

Grier SA, Kumanyika S Targeted marketing and public health Annual Review 

of Public Health 2010;31:349-369

Kumanyika S, Grier S Targeting interventions for ethnic minority and lowincome populations The Future of Children 2006;16(1):187-207

Skelton JA, Cook SR, Auinger P, Klein JD, Barlow SE Prevalence and trends 

of severe obesity among US children and adolescents Academic Pediatrics 

2009;9(5):322-329
119

2. O VERCOMING DIFFERENCES BETWEEN AND AMONG ACADEMICS AND 

THE COMMUNITY

The backgrounds and languages of researchers are often different from 

those of community members The concept of culture noted in Chapter 1 

captures the different norms that can govern the attitudes and behaviors of 

researchers and those who are not part of the research enterprise In addition, the inequalities highlighted by the socio-ecological perspective often 

manifest in difficult “town-gown” relationships How can these differences 

be overcome in the interests of CEnR?

A. How do you engage the community when there are cultural differences (race or 

ethnicity) between the community and the researchers?

Kimberly Horn, EdD, Geri Dino, PhD

Challenge

American Indian youth are one of the demographic groups at highest risk for 

smoking (Johnston et al, 2002; CDC, 2006), and yet there is little research 

regarding effective interventions for American Indian teens to prevent or quit 

smoking Unfortunately, American Indians have a long history of negative 

experiences with research, ranging from being exploited by this research 

to being ignored by researchers Specifically, they have been minimally 

involved in research on tobacco addiction and cessation in their own communities This problem is compounded by the economic, spiritual, and 

cultural significance of tobacco in American Indian culture In the late 1990s, 

the West Virginia University PRC and its partners were conducting research 

on teen smoking cessation in North Carolina, largely among white teens 

Members of the North Carolina American Indian community approached 

the researchers about addressing smoking among American Indian teens, 

focusing on state-recognized tribes

Action Steps

CBPR approaches can be particularly useful when working with underserved communities, such as American Indians, who have historically been 

exploited For this reason, CBPR approaches served as the framework for 
120

a partnership that included the West Virginia University PRC, the North 

Carolina Commission of Indian Affairs, the eight state-recognized tribes, and 

the University of North Carolina PRC The CBPR-driven process began with 

formation of a multi-tribe community partnership board composed 

of tribal leaders, parents, teachers, school personnel, and clergy 

The researchers and the community board developed a document 

of shared values to guide the research process Community input 

regarding the nature of the program was obtained from focus 

groups, interviews, surveys, and informal discussions, including 

testimonials and numerous venues for historical storytelling

As the community and the researchers continued to meet, they encountered 

challenges concerning the role and meaning of tobacco in American Indian 

culture The researchers saw tobacco as the problem, but many community 

members did not share that view This was a significant issue to resolve 

before the project could move forward A major breakthrough occurred 

when the partners reached a declarative insight that tobacco addiction, not 

tobacco, was the challenge to be addressed From that day forward, the group 

agreed to develop a program on smoking cessation for teens that specifically addressed tobacco addiction from a cultural perspective In addition, 

the community decided to use the evidence-based Not on Tobacco (N-O-T) 

program developed by the West Virginia University PRC as the starting 

point American Indian smokers and nonsmokers, N-O-T facilitators from 

North Carolina, and the community board all provided input into the program’s development In addition, teen smokers provided session-by-session 

feedback on the original N-O-T program Numerous recommendations for 

tailoring and modifying N-O-T resulted in a new N-O-T curriculum for 

American Indians The adaptation now provides 10 tailored sessions (Horn 

et al, 2005a; Horn et al, 2008)

The N-O-T program as modified for American Indians continues to be used 

in North Carolina, and there are ongoing requests from various tribes across 

the US for information about the program The initial partnership was supported by goodwill and good faith, and the partnership between American 

Indians and N-O-T led to additional collaborations, including a three-year 

CDC-funded CBPR project to further test the American Indian N-O-T program 

and to alter the political and cultural norms related to tobacco across North 

Carolina tribes Critically, grant resources were divided almost equally among 

The researchers and the 

community board developed a 

document of shared values to 

guide the research process.
121

the West Virginia PRC, the North Carolina PRC, and the North Carolina 

Commission on Indian Affairs Each organization had monetary control over 

its resources In addition, all grants included monies to be distributed to 

community members and tribes for their participation This statewide initiative served as a springboard for localized planning and action for tobacco 

control and prevention across North Carolina tribes (Horn et al, 2005b)

Take-Home Messages

•	 	Act	on	the	basis	of	value-driven,	community-based	principles,	which	assure	

recognition of a community-driven need

•	 Build	on	the	strengths	and	assets	of	the	community	of	interest.

•	 Nurture	partnerships	in	all	project	phases;	partnership	is	iterative.

•	 Integrate	the	cultural	knowledge	of	the	community.

•	 Produce	mutually	beneficial	tools	and	products.

•	 Build	capacity	through	co-learning	and	empowerment.

•	 Share	all	findings	and	knowledge	with	all	partners.

References

Centers for Disease Control and Prevention Cigarette smoking among adults—

United States, 2006 Morbidity and Mortality Weekly Report 2007;56(44):1157-1161

Horn K, Dino G, Goldcamp J, Kalsekar I, Mody R The impact of Not On 

Tobacco on teen smoking cessation: end-of-program evaluation results, 1998 

to 2003 Journal of Adolescent Research 2005a;20(6):640-661

Horn K, McCracken L, Dino G, Brayboy M Applying community-based 

participatory research principles to the development of a smoking-cessation 

program for American Indian teens: “telling our story” Health Education and 

Behavior 2008;35(1):44-69
122

Horn K, McGloin T, Dino G, Manzo K, McCracken L, Shorty L, et al Quit 

and reduction rates for a pilot study of the American Indian Not On Tobacco 

(N-O-T) program Preventing Chronic Disease 2005b;2(4):A13

Johnston L, O’Malley P, Bachman J Monitoring the future national survey 

results on drug use, 1975–2002. NIH Publication No03-5375 Bethesda (MD): 

National Institute on Drug Abuse; 2002

B. How do you work with a community when there are educational or 

sociodemographic differences between the community and the researchers?

Marc A. Zimmerman, PhD, E. Hill De Loney, MA

Challenge

University and community partners often have different social, historical, 

and economic backgrounds, which can create tension, miscommunication, 

and misunderstanding These issues were evident in a recent submission of 

a grant proposal; all of the university partners had advanced degrees, came 

from European-American backgrounds, and grew up with economic security In contrast, the backgrounds of the community partners ranged from 

two years of college to nearing completion of a PhD, and socioeconomic 

backgrounds were varied All of the community partners were involved 

in a community-based organization and came from African American 

backgrounds

Despite extensive discussion and a participatory process (eg, data-driven 

dialogue and consensus about the final topic selected), the communityuniversity partnership was strained during the writing of the proposal Time 

was short, and the university partners volunteered to outline the contents 

of the proposal, identify responsibilities for writing different parts of the 

proposal, and begin writing The proposal details (eg, design, contents of 

the intervention, recruitment strategy, and comparison community) were 

discussed mostly through conference calls
123

Action Steps

The university partners began writing, collating what others wrote, and initiating discussions of (and pushing for) specific design elements Recruitment 

strategy became a point of contention and led to heavy discussion The 

university partners argued that a more scientifically sound approach would 

be to recruit individuals from clinic settings that had no prior connections 

to those individuals The community partners argued that a more practical 

and locally sound approach would be to recruit through their personal networks No resolution came during the telephone calls, and so the university 

partners discussed among themselves the two sides of the argument and 

decided to write the first draft with participants recruited from clinic settings (in accord with their original position) The university partners sent 

the draft to the entire group, including the county health department and 

a local health coalition as well as the community partners, for comments

The community partners did not respond to drafts of the proposal as quickly 

as the university partners expected, given the deadlines and administrative 

work that were required to get the proposal submitted through the university This lack of response was interpreted by the university partners as tacit 

approval, especially given the tight deadline However, the silence of the 

community partners turned out to be far from an expression of approval 

Their impression, based on the fact that the plan was already written and 

time was getting shorter, was that the university partners did not really 

want feedback They also felt that they were not respected because their 

ideas were not included in the proposal The university partners, however, 

sincerely meant their document as a draft and wanted the community partners’ feedback about the design They thought there was still time to change 

some aspects of the proposal before its final approval and submission by the 

partnership The tight deadline, the scientific convictions of the university 

partners, the reliance on telephone communications, and the imbalance of 

power between the partners all contributed to the misunderstanding and 

miscommunication about the design This process created significant problems that have taken time to address and to heal
124

Take-Home Messages

•	 	Be	explicit	that	drafts	mean	that	changes	can	be	made	and	that	feedback	

is both expected and desired

•	 	Have	more	face-to-face	meetings,	especially	when	discussing	points	about	

which there may be disagreement, because telephone conferencing does 

not allow for nonverbal cues and makes it more difficult to disagree

•	 Figure	out	ways	to	be	scientifically	sound	in	locally	appropriate	ways.

•	 Acknowledge	and	discuss	power	imbalances.

•	 	Ensure	that	all	partners’	voices	are	heard	and	listened	to,	create	settings	

for open and honest discussion, and communicate perspectives clearly

•	 	Help	partners	understand	when	they	are	being	disrespectful	or	might	be	

misinterpreted

•	 Discuss	differences	even	after	a	proposal	is	submitted.

•	 	Improve	communication	by	establishing	agreed-upon	deadlines	and	midpoint	

check-ins, using active listening strategies, specifically requesting feedback 

with time frames, and facing issues directly so that everyone understands 

them

•	 	Provide	community	partners	with	 time	and	opportunity	 for	developing	

designs for proposals, and provide training for community partners if they 

lack knowledge in some areas of research design

•	 	Set	aside	time	for	university	partners	to	learn	about	the	community	partners’	

knowledge of the community and what expertise they bring to a specific 

project

•	 	Acknowledge	expertise	within	the	partnership	explicitly	and	take	advantage	

of it when necessary
125

C. How do you engage a community when there are cultural, educational, or 

socioeconomic differences within the community as well as between the 

community and the researchers?

Seronda A. Robinson, PhD, Wanda A. Boone, RN, Sherman A. James, PhD, 

Mina Silberberg, PhD, Glenda Small, MBA

Challenge

Conducting community-engaged research requires overcoming various hierarchies to achieve a common goal Hierarchies may be created by differing 

economic status, social affiliation, education, or position in the workplace 

or the community A Pew Research Center survey, described by Kohut et al 

(2007), suggests that the values of poor and middle-class African Americans 

have moved farther apart from each other in recent years and that middleclass African Americans’ values have become more like those of whites than 

of poor African Americans In addition, African Americans are reporting 

seeing greater differences created by class than by race (Kohut et al 2007) 

It is widely known that perceived differences in values may influence interactions between groups

Approaches to engage the community can be used as bridge builders when 

working with economically divided groups The African-American Health 

Improvement Partnership (AAHIP) was launched in October 2005 in Durham, 

North Carolina, with a grant from the National Center (now 

Institute) for Minority Health and Health Disparities through a grant 

program focused on community participation The AAHIP research 

team consists of African American and white researchers from 

Duke University with terminal degrees and research experience and 

health professionals/community advocates from the Community 

Health Coalition, Inc, a local nonprofit The community advisory 

board (CAB) is composed of mostly African American community 

leaders representing diverse sectors of Durham’s African American 

and health provider communities The first study launched by the AAHIP, 

which is ongoing, is an intervention designed by the AAHIP CAB and its 

research team to improve disease management in African American adults 

with type 2 diabetes

Approaches to engage the 

community can be used as 

bridge builders when working 

with economically divided 

groups.
126

At meetings of the CAB, decisions were to be made by a majority vote of 

a quorum of its members Members of the research team would serve as 

facilitators who provided guidance and voiced suggestions The sharing of 

information was understood to be key to the process However, dissimilarities in educational level and experience between the research team and the 

CAB and variations in socioeconomic status, positions, and community roles 

among CAB members created underlying hierarchies within the group (ie, 

the CAB plus the research team) The research team assumed a leadership 

role in making recommendations Notably, even within the CAB, differences among its members led to varying levels of comfort with the CAB 

process with the result that some members did most of the talking while 

others were hesitant to make contributions Many of the community leaders were widely known for their positions within the community and their 

accomplishments, and these individuals were accustomed to voicing their 

opinions, being heard, and then being followed Less influential members 

were not as assertive

Action Steps

Faculty from North Carolina Central University, a historically black university in Durham, conduct annual evaluations to assess the functioning of 

the CAB and the research team, in particular to ensure that it is performing 

effectively and meeting the principles of CBPR An early survey found that 

only about 10% of respondents felt that racial differences interfered with 

productivity, and 19% felt that the research team dominated the meetings 

However, nearly half felt that the meetings were dominated by just one or 

a few members Although more than 90% reported feeling comfortable 

expressing their point of view at the meetings, it was suggested that there 

was a need to get everyone involved

CAB members suggested ways to rectify the issues of perceived dominance, 

and all parties agreed to the suggestions From then on, the entire CAB 

membership was asked to contribute to the CAB meeting agendas as a way 

to offer a larger sense of inclusion At the meetings themselves, the chair 

made a point of soliciting remarks from all CAB members until they became 

more comfortable speaking up without being prompted In addition, subcommittees were established to address important business These made 

active participation easier because of the size of the group
127

As seats came open on the CAB, members were recruited with an eye to 

balancing representation in the group by various characteristics, including 

gender, age, socioeconomic status, and experience with diabetes (the outcome of interest) Overall, a change was seen in the level of participation 

at meetings, with more members participating and less dominance by a 

few Moreover, former participants in the type 2 diabetes intervention were 

invited to join the CAB and have now assumed leadership roles

Take-Home Messages

•	 	Evaluate	your	process	on	an	ongoing	basis	and	discuss	results	as	a	group.

•	 	Assure	recognition	of	a	community-driven	need	through	strong	and	fair	

leadership

•	 	Make	concerted	efforts	 to	draw	out	and	acknowledge	 the	voices	of	all	

participants

•	 Create	specialized	committees.

•	 	Engage	participants	in	 the	choosing	of	new	board	members	(especially	

former participants)

Reference

Kohut A, Taylor P, Keeter S Optimism about black progress declines: blacks 

see growing values gap between poor and middle class Pew Social Trends 

Report 2007;91 Retrieved from http://pewsocialtrendsorg/files/2010/10/

Race-2007pdf
128

3. WORKING WITH NONTRADITIONAL COMMUNITIES

As described in Chapter 1, communities vary greatly in their composition 

New communication technologies mean that increasingly there are communities that do not conform to geographic boundaries and that collaboration 

can occur across great distances These new kinds of communities and 

collaborations have their own unique challenges, illustrated in the following vignettes

A. How do you maintain community engagement when the community is 

geographically distant from the researchers?

Deborah Bowen, PhD

Challenge

Distance poses a sometimes insurmountable barrier to open and accurate 

communication and engagement People may feel left out if they perceive 

that distance is interfering with the connections between the research team 

and partners in the community Maintaining involvement in multiple ways 

can solve this problem

The principal investigator (PI) of an NIH-funded project was located at an 

academic institution, whereas community partners (Alaskan Natives and 

American Indians) were scattered through 40 sites across a large region 

in the US Before the project began, the PI knew that even with an initial 

positive response, participation in the project would be hard to maintain 

across a multiyear project She used two strategies to maintain contact and 

connection with the 40 community partners: refinements in organization 

and strategic personal visits

Action Steps

The PI identified each community organization’s preferred method for communication and used that method for regular scheduled contacts The methods 

were mostly electronic (telephone, email, or fax) Every scheduled contact 
129

brought a communication from the contact person in the community, no 

matter how insignificant The community partners contributed to the communication, and if they had an issue they communicated it to the contact 

person The communications were used to solve all kinds of problems, not 

just those that were research related In fact, communications were social 

and became sources of support as well as sources of project information 

This contact with the 40 community partners was continued for the duration of the six-year project

The PI knew that relying on electronic communication alone was not sufficient Thus, despite the vast distances between her institution and the 

community partners, the PI scheduled at least annual visits to see them 

She asked each partner for the most important meeting or event 

of the year and tried to time the visit to attend it The face-to-face 

interaction allowed by these visits was meaningful to the PI and the 

partners The PI followed the cultural rules of visits (eg, bringing 

gifts from their region to the community partners) Even with the 

barriers of space and time, engagement at a personal level made 

the research activities easier and more memorable for the partners

Take-Home Messages

•	 	Take	communication	seriously,	even	if	it	is	inconvenient	to	do	so.

•	 	Keep	notes	or	files	on	the	people	involved	to	remember	key	events.

•	 	Take	into	consideration	the	community	partner’s	perspective	on	what	is	

important

Reference

Hill TG, Briant KJ, Bowen D, Boerner V, Vu T, Lopez K, Vinson E Evaluation 

of Cancer 101: an educational program for native settings Journal of Cancer 

Education 2010;25(3):329-336

The face-to-face interaction 

allowed by these visits was 

meaningful to the PI and the 

partners.
130

B. How do you engage a state as a community?

Geri Dino, PhD, Elizabeth Prendergast, MS, Valerie Frey-McClung, MS, Bruce 

Adkins, PA, Kimberly Horn, EdD

Challenge

West Virginia is the second most rural state in the US with a population 

density of just 75 persons per square mile The state consistently has one of 

the worst health profiles in the nation, including a disproportionably high 

burden of risk factors for chronic disease The most notable is tobacco use 

(Trust for America’s Health, 2008) Addressing these chronic disease risk 

disparities was central to West Virginia University’s application to become a 

CDC-funded PRC Early in the application process, senior leadership from the 

university engaged the state’s public health and education partners to create 

a vision for the PRC Both then and now, the PRC’s state and community 

partners view West Virginia as having a culture of cooperation and service 

that embraces the opportunity to solve problems collectively The vision that 

emerged, which continues to this day, reflected both the state’s need and 

a sense of shared purpose — the entire state of West Virginia would serve 

as the Center’s target community Importantly, the academic-state partners 

committed themselves to develop the PRC as the state leader in prevention 

research by transforming public health policy and practice through collaborative research and evaluation In addition, partners identified tobacco use 

as the top research priority for the PRC These decisions became pivotal for 

the newly established Center and began a 15-year history of academic-state 

partnerships in tobacco control

Action Steps

Several critical actions were taken First, in 1995, West Virginia had the highest rate of teen smoking in the nation, and thus the academic-state partners 

determined that smoking cessation among teens would be the focus of the 

Center’s core research project Second, faculty were hired to work specifically on state-driven initiatives in tobacco research Third, PRC funds were 

set aside to conduct tobacco-related pilot research using community-based 

participatory approaches Fourth, state partners invited Center faculty to 

tobacco control meetings; the faculty were encouraged to provide guidance 
131

and research leadership Partners also committed to ongoing 

collaborations through frequent conference calls, the sharing 

of resources, and using research to improve tobacco control 

policy and practice In addition, a statewide focus for the PRC 

was reiterated In 2001, the PRC formed and funded a statewide 

Community Partnership Board to ensure adequate representation 

and voice from across the state This board provided input into 

the PRC’s tobacco research agenda Partners collectively framed 

pilot research on tobacco and the original core research project, 

the development and evaluation of the N-O-T teen smoking cessation program

Significantly, the Bureau for Public Health, the Department of Education Office 

of Healthy Schools, and the PRC combined their resources to develop and 

evaluate N-O-T Soon after, the American Lung Association (ALA) learned 

about N-O-T and was added as a partner The ALA adopted N-O-T, and the 

program is now a federally designated model program with more than 10 

years of research behind it It is also the most widely used teen smoking 

cessation program in both the state and the nation (Dino et al, 2008) The 

Bureau’s Division of Tobacco Prevention continues to provide resources to 

disseminate N-O-T statewide The PRC, in turn, commits core funds to the 

Division’s partnership activities

Additionally, the PRC and the Office of Healthy Schools collaborated to assess 

West Virginia’s use of the 1994 CDC-recommended guidelines on tobacco 

control policy and practice in schools Partners codeveloped a statewide 

principals’ survey and used survey data to create a new statewide school 

tobacco policy consistent with CDC guidelines (Tompkins et al, 1999) Within 

a year, the West Virginia Board of Education Tobacco-Free Schools Policy 

was established by Legislative Rule §126CSR66 As collaborations grew, the 

state received funds from the 2001 Master Settlement Agreement; some of 

these funds were used by the Division of Tobacco Prevention to establish an 

evaluation unit within the PRC This unit became the evaluator for tobacco 

control projects funded through the Master Settlement as well as by other 

sources The evaluation unit has been instrumental in helping the programs 

improve their process of awarding grants by helping to develop a request for 

proposals (RFP) and by providing training in grant writing and evaluation 

Partners also committed to 

ongoing collaborations through 

frequent conference calls, the 

sharing of resources, and using 

research to improve tobacco 

control policy and practice.
132

to those applying for funds The evaluators continue to develop tools and 

reporting guidelines to measure success Through the years, this process 

has allowed the Division of Tobacco Prevention to identify the organizations 

best suited to carry out tobacco control efforts, and two highly successful, 

regional tobacco-focused networks have been created — one community 

based and the other school based The Division, which consistently makes 

programmatic decisions based on evaluation reports and recommendations 

from the PRC, believes that the PRC-state collaboration has been one of the 

key partnerships leading to the many successes of the tobacco prevention 

and control program In the words of Bruce Adkins, Director of the Division 

of Tobacco Prevention, the state-PRC evaluation partnerships:

ensure that our tobacco prevention and cessation efforts are founded 

in science, responsive to communities, and accountable to state policymakers Based on PRC guidance and CDC Best Practices collaboration, 

we only fund evidence-based programs, and we continuously quantify 

and qualify every intervention we fund Without the PRC, our division 

would have far fewer successes to share with the nation (personal 

communication with Mr Adkins, September 2008)

Take-Home Messages

•	 	There	must	be	an	ongoing	commitment	to	the	partnership,	and	it	must	be	

reinforced on a continuing basis

•	 	Partners	need	to	establish	a	set	of	shared	values,	such	as	recognizing	the	

importance of a statewide focus, using CBPR approaches, and emphasizing 

the importance of research translation

•	 	Partners	must	commit	to	shared	decision	making	and	shared	resources.

•	 	Roles	and	responsibilities	should	be	defined	based	on	complementary	skill	

sets

•	 Partners	must	establish	mutual	respect	and	trust.
133

References

Dino G, Horn K, Abdulkadri A, Kalsekar I, Branstetter S Cost-effectiveness 

analysis of the Not On Tobacco program for adolescent smoking cessation 

Prevention Science 2008;9(1):38-46

Tompkins NO, Dino GA, Zedosky LK, Harman M, Shaler G A collaborative 

partnership to enhance school-based tobacco control policies in West Virginia 

American Journal of Preventive Medicine 1999;16(3 Suppl):29-34

Trust for America’s Health West Virginia state data. Washington (DC): Trust 

for America’s Health; 2008
134

4. INITIATING A PROJECT WITH A COMMUNITY AND DEVELOPING A 

COMMUNITY ADVISORY BOARD

As described in Chapter 1, partnerships evolve over time Often, the first 

steps toward engagement are the most difficult to take The vignettes in this 

section demonstrate some effective ways of initiating research collaborations

A. How do you start working with a community?

Daniel S. Blumenthal, MD, MPH

Challenge

In the mid-1980s, the Morehouse School of Medicine in Atlanta was a new 

institution, having been founded only a few years earlier Because its mission 

called for service to underserved communities, two contiguous low-income 

African American neighborhoods in southeast Atlanta were engaged These 

neighborhoods, Joyland and Highpoint, had a combined population of about 

5,000 and no established community organization Morehouse dispatched a 

community organizer to the area, and he spent the next few months learning 

about the community He met the community leaders, ministers, businesspeople, school principals, and agency heads, and he secured credibility by 

supporting neighborhood events and even buying t-shirts for a kids’ softball 

team Soon, he was able to bring together the leaders, who now knew and 

trusted him (and, by extension, Morehouse), to create and incorporate the 

Joyland-Highpoint Community Coalition (JHCC)

With the help of the community organizer, the JHCC conducted an assessment of the community’s health needs, mostly by surveying people where 

they gathered and worked Drug abuse was at the top of the community’s 

problem list, and Morehouse secured a grant to conduct a project on preventing substance abuse Most of the grant was subcontracted to the JHCC, 

which was able to use the funds to hire a project director (who also served 

as the organization’s executive director) and other staff
135

Action Steps

Morehouse continued to work with Joyland, Highpoint, and the surrounding neighborhoods (known collectively as “Neighborhood Planning Unit 

Y,” or NPU-Y) for the next few years, even long after the original grant had 

expired In the mid-1990s, it took advantage of the opportunity to apply to 

CDC for funds to establish a PRC Applicants were required to have a community partner, and so Morehouse and NPU-Y became applicant partners 

The grant was funded, and a community-majority board was created to 

govern the center There were still issues to be worked out between the 

medical school and the community, such as the location of the center and 

the details of research protocols, but the foundation of trust allowed these 

issues to be resolved while preserving the partnership (Blumenthal, 2006)

Take-Home Messages

•	 	Community	partnerships	are	not	built	overnight.	A	trusting	partnership	is	

developed over months or years

•	 	A	partnership	does	not	depend	on	a	single	grant,	or	even	a	succession	of	

grants The partnership continues even when there are no grants

•	 	A	partnership	means	that	resources	and	control	are	shared.	The	academic	

institution or government agency must be prepared to share funds with 

the community The community should be the “senior partner” on issues 

that affect it

•	 	Community	representatives	should	primarily	be	people	who	live	in	 the	

community The programs and projects implemented by agencies, schools, 

and other entities affect the community, but their staff often live elsewhere

Reference

Blumenthal DS A community coalition board creates a set of values for 

community-based research Preventing Chronic Disease 2006;3(1):A16
136

B. How do you set up and maintain a community advisory board?

Tabia Henry Akintobi, PhD, MPH, Lisa Goodin, MBA, Ella H. Trammel, David 

Collins, Daniel S. Blumenthal, MD, MPH

Establishing a governing body that ensures community-engaged research 

is challenging when (1) academicians have not previously been guided by 

neighborhood experts in the evolution of a community’s ecology, (2) community members have not led discussions regarding their health priorities, 

or (3) academic and neighborhood experts have not historically worked 

together as a single body with established rules to guide roles and operations The Morehouse School of Medicine PRC was based on the applied 

definition of CBPR, in which research is conducted with, not on, communities 

in a partnership relationship Faced with high levels of poverty, a lack of 

neighborhood resources, a plague of chronic diseases, and basic distrust in 

the research process, community members initially expressed their apprehension about participating in yet another partnership with an academic 

institution to conduct what they perceived as meaningless research in their 

neighborhoods

Action Steps

Central to establishing the Morehouse Community Coalition Board (CCB) 

was an iterative process of disagreement, dialogue, and compromise that 

ultimately resulted in the identification of what academicians needed from 

neighborhood board members and what they, in turn, would offer communities Not unlike other new social exchanges, each partner had to first 

learn, respect, and then value what the other considered a worthy benefit 

in return for participating on the CCB According to the current CCB chair, 

community members allow researchers conditional access to their communities to engage in research with an established community benefit 

Benefits to CCB members include the research findings as well as education, 

the building of skills and capacity, and an increased ability to access and 

navigate clinical and social services The community has participated in 

Morehouse School of Medicine PRC CBPR focused on reducing the risk of 

HIV/AIDS and screening for colorectal cancer Further, community-based 

radio broadcasts have facilitated real-time dialogue between metropolitan Atlanta community members and researchers to increase awareness 
137

regarding health promotion activities and various ways that communities 

can be empowered to improve their health Other benefits have been the 

creation or expansion of jobs and health promotion programs through grants 

for community-led health initiatives

Critical to maintaining the CCB are established bylaws that provide a blueprint for the governing body As much as possible, board members should 

be people who truly represent the community and its priorities Agency 

staff (eg, health department staff, school principals) may not live in the 

community where they work, and so they may not be good representatives, 

even though their input has value In the case of the Morehouse PRC, agency 

staff are included on the board, but residents of the community are in the 

majority, and one always serves as the CCB chair All projects and protocols 

to be implemented by the PRC must be approved by the CCB’s 

Project Review Committee, which consists of neighborhood 

representatives For more than a decade, critical research has 

been implemented and communities have sustained change The 

differing values of academic and community CCB representatives 

are acknowledged and coexist within an established infrastructure that supports collective functioning to address community 

health promotion initiatives (Blumenthal, 2006; Hatch et al, 1993)

Take-Home Messages

•	 	Engagement	in	effective	community	coalition	boards	is	developed	through	

multi-directional learning of each partner’s values and needs

•	 	Community	coalition	boards	are	built	and	sustained	over	time	to	ensure	

community ownership through established rules and governance structures

•	 	Trust	and	relationship	building	are	both	central	to	having	neighborhood	

and research experts work together to shape community-engaged research 

agendas

•	 	Maintaining	a	community	coalition	board	requires	ongoing	communication and feedback, beyond formal monthly or quarterly meetings, to keep 

members engaged

For more than a decade, critical 

research has been implemented 

and communities have sustained 

change.
138

References

Blumenthal DS A community coalition board creates a set of values for 

community-based research Preventing Chronic Disease 2006;3(1):A16

Hatch J, Moss N, Saran A, Presley-Cantrell L, Mallory C Community research: 

partnership in black communities American Journal of Preventive Medicine 

1993;9(6 Suppl):27-31

C. How do you launch a major community-engaged research study with a brandnew partnership that brings together diverse entities and individuals?

Mina Silberberg, PhD, Sherman A. James, PhD, Elaine Hart-Brothers, MD, MPH, 

Seronda A. Robinson, PhD, Sharon Elliott-Bynum, PhD, RN

Challenge

As described in an earlier vignette, the African-American Health Improvement 

Partnership was launched in October 2005 in Durham, North Carolina, with 

a grant from the National Center for Minority Health and Health Disparities 

AAHIP built on the prior work of participant organizations and individuals, 

but it created new relationships and was a new entity The lead applicant on 

the grant was the Duke Division of Community Health (DCH), which had 

been working with community partners for seven years to develop innovative 

programs in care management, clinical services, and health education to meet 

the needs of underserved populations, primarily in Durham

Until that point, research in the DCH had been limited to evaluation of its 

own programs, although some faculty and staff had conducted other types of 

research in their earlier positions The AAHIP research team included Elaine 

Hart-Brothers, head of the Community Health Coalition (CHC), a communitybased organization dedicated to addressing health disparities by mobilizing the 

volunteer efforts of Durham African American health professionals The DCH 

had just begun working with the CHC through a small subcontract Because 

the AAHIP was an entirely new entity, it had no community advisory board 

(CAB), and although the DCH and other Duke and Durham entities were 

engaged in collaborative work, no preexisting coalitions or advisory panels had 

the scope and composition required to support the AAHIP’s proposed work
139

Action Steps

The CHC was brought into the development of the grant proposal at the beginning, before the budget was developed, and it played a particularly important 

role in developing the CAB The goal was to create a board that represented 

diverse sectors of Durham’s African American and provider communities On 

this issue, Sherman A James (the study PI) and Mina Silberberg (currently 

the co-PI) deferred to the expertise of Hart-Brothers and Susan Yaggy, chief of 

the DCH, both of whom had broad and deep ties to the Durham community 

and years of experience with collaborative initiatives

The research team decided it would be essential to evaluate its collaboration 

with the CAB to ensure fidelity to the principles of collaboration, to build 

capacity, and to help with the dissemination of lessons learned For this 

external evaluation, it turned to North Carolina Central University (NCCU), 

enlisting the services of LaVerne Reid

When the grant was awarded, it was time to bring together these diverse 

players and begin work in earnest Hart-Brothers quickly realized that as a 

full-time community physician, she could not by herself fulfill CHC’s role 

on the project: to serve as the community “outreach” arm of the research 

team and participate actively in study design, data collection and analysis, 

and dissemination She proposed a budget reallocation to bring on Sharon 

Elliott-Bynum, a nurse and community activist with a long and distinguished 

history of serving Durham’s low-income community DCH faculty realized 

with time that Elliott-Bynum brought to the project unique expertise and 

contacts in sectors where DCH’s own expertise and contacts were limited, 

particularly the African American faith community Similarly, Reid, who had 

recently been appointed interim Associate Dean of the College of Behavioral 

and Social Sciences at NCCU, recognized that she no longer had the time to 

evaluate the CAB-research team collaboration on her own and brought in 

Seronda Robinson from NCCU

As the work progressed, new challenges arose in the relationship between 

Duke and the CHC As a small community-based organization, the CHC used 

accounting methods that did not meet Duke’s requirements or those of NIH; 

invoices lacked sufficient detail and documentation Payment to the CHC fell 

behind, as the DCH returned invoices it had received for revision, and both 
140

parties grew frustrated The partners decided that the DCH administrator 

would develop written instructions for the CHC on invoicing for purposes 

of the grant and train CHC staff on these procedures Eventually, CHC also 

brought on a staffer with greater skills in the accounting area

Duke’s lengthy process for payment of invoices frustrated the CHC, which, as 

a small organization, was unable to pay staff without a timely flow of funds 

In response, the research team established that the CHC would tell the DCH 

immediately if its check did not arrive when expected, and the DCH would 

immediately check on payment status with the central accounting office 

Moreover, the DCH determined that when the CHC needed a rapid influx of 

funds, it should invoice more frequently than once per month In this way, 

through sustained engagement by all parties, the DCH and CHC moved from 

pointing fingers at each other to solving what had been a frustrating problem 

In explaining the AAHIP’s capacity to work through these invoicing issues, 

participants cite not only the actions taken in that moment but also a history 

of open communication and respect, particularly the inclusion of the CHC in 

the original budget and the understanding that all members of the research 

team are equal partners

Take-Home Messages

•	 	Create	the	preconditions	for	solving	problems	and	conflicts	through	a	history and environment of inclusion (particularly with regard to money)

•	 	Recognize	and	use	the	unique	expertise,	skills,	and	connections	of	each	

partner Step back when necessary to defer to others

•	 	Be	flexible.	The	study	needs	will	change,	as	will	 the	circumstances	of	

individual partners

•	 Put	the	right	people	with	the	right	level	of	commitment	in	the	right	job.

•	 	Commit	the	staff	time	required	for	effective,	active	community	participation on a research team

•	 	Communicate	and	invest	in	capacity	building.	The	operating	procedures	and	

needs of academic institutions, federal agencies, and small community-based 
141

organizations are usually very different As a result, community and 

academic partners may come to view each other, perhaps mistakenly, as 

uncooperative Partners will need to learn each other’s procedures and 

needs and then solve problems together Community partners are also 

likely to need capacity building in the accounting procedures required by 

academic institutions and the federal government
142

5. O VERCOMING COMPETING PRIORITIES AND INSTITUTIONAL 

DIFFERENCES

From the concepts of community set forth in Chapter 1 it is apparent that 

universities can be seen as communities that have their own norms, social 

networks, and functional sectors How can we resolve the conflicts and 

misunderstandings that result when the operations and expectations of 

universities differ from those of their collaborating communities?

A. How do you work with a community when there are competing priorities and 

different expectations?

Karen Williams, PhD, John M. Cooks, Elizabeth Reifsnider, PhD, 

Sally B. Coleman

Challenge

A major priority for the University of Texas Medical Branch at Galveston when 

developing its CTSA proposal was to demonstrate community partnership 

with a viable, grassroots community-based organization (CBO) One of the 

coinvestigators listed on the CTSA proposal was a research affiliate of an 

active CBO, which was composed of persons representing practically every 

facet of life in the community While focusing on its own organizational 

development, this CBO had identified eight community health needs for its 

focus and implemented two NIH-funded projects (Reifsnider et al, 2010) 

The CTSA coinvestigator wanted the CBO to be the community partner for 

the CTSA proposal, and the other CTSA investigators agreed The brunt of 

the active work in the community outlined in the CTSA proposal became 

the CBO’s responsibility However, although the CTSA work was within the 

existing scope of work for the community partner, certain invalid assumptions about the type of activities the CBO would do for the CTSA were written 

into the final version of the grant Most important, no budget was presented 

to the CBO that showed support for expected deliverables

The CBO was unwilling to commit to being a part of the CTSA until the 

proposal spelled out in detail what it was required to do for the funds An 

official meeting took place between selected CBO members and CTSA investigators; after an informal discussion, CBO members gave the university 
143

members a letter requesting specific items in return for their participation 

A formal response to the letter was not provided by the university partner; instead, the requested changes were inserted into the proposal and a 

revised draft circulated to community partners with the assumption that it 

would address their requests This was not the understanding of the community partners, and this misunderstanding strained future relationships 

The CBO felt that it had not received the answers it had requested, and the 

university coinvestigator believed that revising the proposal addressed the 

CBO’s requests The miscommunication persisted for months and resulted 

in difficulty in establishing the operations of the CTSA once it was funded

Action Steps

The issue was finally addressed when the university coinvestigator approached 

the CBO for help in writing another NIH proposal At that time, it emerged 

that the CTSA-related issues had never been resolved and that the CBO felt 

its cooperation was being taken for granted A meeting was held with the 

CBO president, another member, and two university researchers who were 

dues-paying members of the CBO During this meeting, the misunderstanding 

was clarified and apologies were offered and accepted Both the CBO and 

the university members realized that in a rush to complete grant-writing 

assignments, shortcuts had been taken that should have been avoided

Take-Home Messages

•	 	University	partners	should	be	clear	in	responding	to	written	requests	from	

a community for communication about specifics on research collaboration Communications can be easily misunderstood by well-intentioned 

individuals Asking for feedback should be routine practice

•	 	It	is	critical	for	partners	to	respect	and	include	the	input	of	the	community	

they are trying to serve

•	 	The	lines	of	communication	must	remain	open	until	all	issues	are	considered resolved by everyone involved

•	 Transparency	is	always	essential	for	all	entities.
144

Reference

Reifsnider E, Hargraves M, Williams KJ, Cooks J, Hall V Shaking and rattling: 

developing a child obesity prevention program using a faith-based community 

approach Family and Community Health 2010;33(2):144-151

B. How do you overcome differences in financial practices between the academic 

institution and the community?

Karen Williams, PhD, Sally B. Coleman, John M. Cooks, Elizabeth 

Reifsnider, PhD

Challenge

Academic research institutions and community organizations often partner 

on research projects even though they may differ significantly in key ways, 

including organizational capacity and the types of knowledge considered 

useful for social problem solving (Williams, 2009) Although evaluation tools 

exist for assessment of organizational capacity and for setting 

priorities (Butterfoss, 2007), tools for assessing the “fit” between 

partnering organizations are scarce This vignette describes the 

challenges faced by a CBPR partnership during the preparation 

and implementation of a joint grant proposal

In October 2007, NIH announced the NIH Partners in Research 

Program Each application was required to represent a partnership between the community and scientific investigators Upon 

award, the grants were to be split into two separate but administratively 

linked awards A community health coalition and university health science 

center that had worked together for several years submitted a joint proposal 

Preparing the budget for the joint proposal highlighted power imbalances in 

the community-academic partnership The university-based investigators’ 

salaries were large relative to the salary of the community-based PI, which 

was based on what he earned as an elementary school music teacher To 

direct more funds to the community partner, the partnership minimized the 

university-based investigators’ time on the project and allocated all non-salary 

research funds to the budget of the community partner This resulted in a 

Academic research institutions 

and community organizations 

often partner on research projects 

even though they may differ 

significantly in key ways...
145

30% community/70% university split of direct costs In addition, every dollar of direct cost awarded to the university partner garnered an additional 51 

cents, because the university had negotiated a 51% indirect cost rate with NIH 

However, the community partner received no indirect cost add-on because 

it had no negotiated rate with NIH The irony in allocating program funding 

to the community partner was that this sharing gave the community partner 

more administrative work to do, even though the partner received no support 

from indirect costs

A second challenge arose that highlighted the difference in expectations 

between university and community partners The grant required that community workers facilitate discussion groups To accomplish this, 

the community portion of the budget had to pay to train community workers and trainees as well as cover costs such as meeting 

rooms, food, and materials Inevitably, the community’s small 

pool of funds was exhausted, and some university funds were 

required Getting community researchers and research expenses 

paid by the university took a month or longer University faculty are 

accustomed to lengthy delays in reimbursement, but community 

members expect prompt payments Both the community-based 

and university-based PIs were put in the uncomfortable position of having to 

continually ask those waiting for payment to be patient Documentation procedures were not as extensive and wait times were shorter when community 

research funds flowed through the community organization

Action Steps

It would have been administratively easier for the university partner to pay the 

community partner on a subcontract However, this arrangement was prohibited 

by NIH because the purpose of the Partners in Research grant was to establish 

an equal partnership In future CBPR projects, the community partner may 

consider subcontracting as a way to decrease administrative burden, even if 

it decreases control over research funds Also, the university-based PI should 

have more thoroughly investigated the procedures for university payments, 

alerted community members to the extended wait times for payments, and 

advocated for streamlined procedures with university administration and 

accounting

A second challenge arose that 

highlighted the difference in 

expectations between university 

and community partners.
146

Take-Home Messages

•	 	“Splitting	budgets	in	half”	is	too	blunt	a	tool	for	the	delicate	work	of	building equal partnerships Exploring more nuanced mechanisms to balance 

power between community and academic partners is critical

•	 	Make	no	assumptions	about	the	capabilities	of	the	institution	(university	

or CBO) or how it functions

•	 	University	and	CBO	partners	need	to	come	to	agreement	on	all	processes	

and timetables that might be involved

•	 	Foster	open	communication	with	those	affected	to	maintain	organizational	

and personal credibility

References

Butterfoss FD Coalitions and partnerships in community health. San Francisco: 

Jossey-Bass; 2007

Williams KJ, Gail BP, Shapiro-Mendoza CK, Reisz I, Peranteau J Modeling 

the principles of community-based participatory research in a community 

health assessment conducted by a health foundation Health Promotion Practice 

2009;10(1):67-75

C. How do you harness the power and knowledge of multiple academic medical 

institutions and community partners?

Carolyn Leung Rubin, EdD, MA, Doug Brugge, PhD, MS, Jocelyn Chu, ScD, MPH, 

Karen Hacker, MD, MPH, Jennifer Opp, Alex Pirie, Linda Sprague Martinez, 

MA, Laurel Leslie, MD, MPH

Challenge

In some cases, several CTSA sites are clustered in a small geographic area and 

thus may be well suited to demonstrating how institutions can overcome competitive differences and work together for the good of their mutual communities 
147

In the Boston metropolitan area, three CTSA sites, Tufts University, Harvard 

University, and Boston University, prioritized working with each other and 

with community partners

Action Steps

To facilitate their collaboration, the three sites took advantage of the CTSA 

program’s Community Engagement Consultative Service, bringing two consultants to Boston to share insights about forming institutional partnerships 

in an urban area Bernadette Boden-Albala from Columbia University in New 

York City and Jen Kauper-Brown from Northwestern University in Evanston, 

Illinois, visited Boston on separate occasions and shared their experiences in 

bringing together CTSA sites and community partners in their areas

These visits helped to facilitate conversation among the three CTSAs about 

how to work together for the mutual benefit of the community At the same 

time, the CTSAs each were having conversations with their community partners about the need to build capacity for research in the community When a 

funding opportunity arose through the American Recovery and Reinvestment 

Act of 2009, the three CTSAs, along with two critical community partners, 

the Center for Community Health Education Research and Services and the 

Immigrant Services Providers Group/Health, decided to collaboratively develop 

a training program to build research capacity

Of the 35 organizations that applied for the first round of funding, 10 were 

selected in January 2010 to make up the first cohort of community research 

fellows These fellows underwent a five-month training course that included 

such topics as policy, ethics, research design, the formulation of questions, 

and methods The community organizations represented in the training 

varied in size, geographic location, and the types of “communities” served 

(eg, disease-specific advocacy organizations, immigration groups, and 

public housing advocacy groups specific to certain geographic boundaries) 

The program used a “community-centered” approach in its design, feedback 

about each session was rapidly cycled back into future sessions, and learning 

was shared between community and academic researchers The first cohort 

concluded its work in 2010 Outcomes and insights from the project will feed 

the next round of training
148

Although the CTSA sites in the Boston area were already committed to working 

together, bringing in consultants with experience in working across academic 

institutions helped them think through a process and learn from other regions’ 

experiences The consultants affirmed that, by working together, academic 

medical centers can better serve the needs of their mutual community rather 

than the individual needs of the institutions This was echoed by participants in the capacity-building program described above One clear response 

from participants was their appreciation that the three academic institutions 

partnered to work with communities rather than splintering their efforts and 

asking community groups to align with one institution or another

Take-Home Messages

•	 	Research	 training	programs	need	 to	model	multidirectional	knowledge	

exchange; the knowledge of community members must be valued and 

embedded into the curriculum alongside academic knowledge

•	 	Transparency,	honesty,	and	sharing	of	resources	(fiscal	and	human)	among	

academic institutions and community groups are crucial to building trust

•	 	Academic	institutions	can	and	should	work	together	on	the	common	mission of serving their communities Outside consultants can help facilitate 

multi-institutional collaboration

CONCLUSION

The vignettes presented here illustrate key challenges in CEnR and provide 

examples of how partnerships have dealt with them Ultimately, what underpins 

the solutions presented here are the same ideals encapsulated in the principles 

of community engagement — clarity of purpose, willingness to learn, time, 

understanding differences, building trust, communication, sharing of control, 

respect, capacity building, partnership, and commitment
The Value of Social Networking 

in Community Engagement
151

Chapter 6

The Value of Social Networking in Community 

Engagement

Ann Dozier, PhD (Chair), Karen Hacker, MD, MPH, Mina Silberberg, PhD, Linda Ziegahn, PhD

INTRODUCTION

Communities are not made up of unrelated individuals or groups; rather, they 

include “social networks” that comprise community groups or organizations, 

individuals, and the relations or “linkages” among them Social networks 

are crucial to every aspect of community engagement, from understanding 

the community and its health issues to mobilizing the community for health 

improvement A growing literature is highlighting the role that individuals’ 

social networks play in conditioning their health, and the emergence of 

electronic social media provides new ways to form and engage networks 

For these reasons, we devote an entire chapter to the role of social networks 

in community engagement, beginning with an overview of the topic and 

then moving to a focused look at the new social media
152

WHAT ARE SOCIAL NETWORKS?

As defined by Wasserman et al (1994), “A social network consists of a finite 

set of actors and the relation or relations defined on them” (p 20) Any one 

individual can be part of multiple social networks, and the nature of these 

networks and the individual’s connection to the networks can vary greatly 

For example, social networks are not necessarily rooted in traditional relationships, such as kinship or clan, but can develop out of geographic proximity, 

work relationships, or recreational activities Moreover, social networks can 

be described and analyzed in terms of their diverse characteristics (eg, how 

many people or organizations belong to a network, how well the members 

of the network know each other, and how equal their relationships are)

SOCIAL NETWORKS AND HEALTH

Social networks can be a key factor in determining how healthy a community 

is For one thing, they can create social supports that provide a buffer against 

the stressors that damage health (House et al, 1998; Zilberberg, 

2011) Social networks may also have negative effects on health, 

however (Arthur, 2002; Cattell, 2001) Christakis et al (2007), 

for example, found “clusters” of obesity within a network of 

people studied over time Their longitudinal analysis suggested 

that these clusters were not merely the result of like-minded 

or similarly situated people forming ties with one another, but 

rather reflected the “spread” of obesity among people who were connected 

to each other (Christakis et al, 2007) Although not everyone agrees on how 

social networks affect health (Cohen-Cole et al, 2008), they seem to play a 

role, together with culture, economics, and other factors, that is important 

for both individuals and communities (Pachucki et al, 2010)

In New York City, for example, one group tailored its outreach and education programs on breast and cervical cancer by determining how differing 

cultural perspectives affected social networks They found that for the Latino 

population, women’s relationships easily lent themselves to the helper role, 

but that access to and utilization of health care in this population were 

mediated by men Therefore, they included both genders in their intervention (Erwin et al, 2007)

Social networks can be a key 

factor in determining how healthy 

a community is.
153

Social networks can also play an important part in community health 

improvement because of their role in the “diffusion of innovation” — a 

concept introduced in Chapter 1 — and in the generation of social capital, 

defined by Putnam (1995) as “features of social organization such as networks, norms, and social trust that facilitate coordination and cooperation 

for mutual benefit” (p 66) A critical first step in engaging communities 

is identifying networks, such as faith communities, whose “social capital” 

can be employed in collective approaches to improving community health

THE ROLE OF SOCIAL NETWORKS IN COMMUNITY ENGAGEMENT

Chapter 4 outlined four practice elements for development of a constituency 

(know the community, establish strategies, build networks, and mobilize 

communities) and used them to conceptualize the tasks of community 

engagement (Hatcher et al, 2008) In this chapter, we will use these four 

elements to describe the role and importance of social networks in community engagement

Know Communities

Learning about a community, whether it is defined geographically or by a 

common interest (for example, a health condition or disease) means knowing the community’s cultures and institutions, its capabilities and assets, 

and its health needs and challenges Typically, learning about a community 

requires a variety of approaches, including gathering existing data and 

generating new information, combining qualitative and quantitative data, 

and incorporating the perspectives of a broad spectrum of individuals, 

organizations, and groups

Understanding a community’s social networks is essential because of their 

potential to affect population health Social networks can also provide 

access to a community and generate knowledge of its characteristics For 

example, traditional healers may be widely known within Hmong or Latino 

networks but unknown to those outside these social networks, including 

those working in health care institutions in the same community It is only 

by bridging to the relevant networks that health care workers can learn 

about these traditional healers
154

Social network analysis (SNA) is a method that can be used to evaluate 

community engagement and assess communities By providing a way of 

describing the diversity of networks and a set of tools for visually representing and quantifying the characteristics of a network, SNA can help partners 

understand a community’s networks and track how they grow and change 

over time This methodology is discussed further in Chapter 7

Establish Positions and Strategies

Social networks represent important groups of constituents in any community health planning initiative These groups can be engaged to provide 

feedback, identify priorities and opportunities, establish positions on issues 

and approaches, and plan strategies for intervention Both obtaining knowledge about social networks and gathering knowledge from such networks 

are essential to the development of relevant strategies for health improvement In addition, social networks are a means of communication, creating 

a platform for sharing and discussing potential positions and strategies

Build and Sustain Networks

Building and sustaining networks of individuals and entities for community 

health improvement or research includes establishing and maintaining communication channels, exchanging resources, and coordinating collaborative 

activities Existing social networks can be effective and efficient platforms 

for efforts in community engagement if they reach people who are central 

to these efforts and if their members share the goals of the engagement 

efforts Through the community engagement process, new networks can 

be developed as well

Mobilize Constituencies

Ultimately, partners and their constituencies must be mobilized to take 

the actions that will lead to improved community health, and mobilization 

must be sustained through leadership, communication, and motivation As 

described earlier in this chapter, this is where the social capital embedded 

in social networks is of the utmost importance Throughout the community 
155

engagement effort, relationships must be strengthened and new capacity 

for collective action developed It is important to reach out and pull in key 

opinion leaders and community stakeholders

In one example of how this can work, a clinician-researcher at the University 

of California, Davis, used social networks to help reduce dog bites among 

children After noticing that a large number of children were being seen for 

treatment of dog bites, the investigator identified social networks such as dog 

owners, school crossing guards, and neighborhood associations and engaged 

them in understanding the problem, defining workable solutions, and mobilizing the community to put these solutions into action (Pan et al, 2005)

ELECTRONIC SOCIAL MEDIA AND COMMUNITY ENGAGEMENT

Introduction

The tools of electronic social media, such as Facebook and Twitter, can be 

used to track, support, create, and mobilize social networks; these tools 

have significant potential to enhance community engagement efforts (Fine, 

2006) Social media venues have undergone a significant shift to greater 

bidirectional or multidirectional communication in recent years (Bacon, 

2009), and thus these venues represent opportunities for health messaging 

that have yet to be fully realized In addition, they provide new forums to 

raise issues, facilitate the exchange of ideas, and engage a larger community

The Potential of Social Media

Social media tools provide a newly emerging mechanism for engaging a large 

and diverse group of participants, including individuals or groups that might 

otherwise be hard to reach or to bring together, such as individuals with a 

rare disease (Bacon, 2009; Fine, 2006) Social media also provide a forum 

for discussion that has important differences from face-to-face interactions 

With social media, all participants have an opportunity to contribute to 

the discussion, responses need not be immediate, and time can be taken to 

review the thread of a discussion Social media also provide opportunities 

to reframe questions as the discussion evolves (Connor, 2009)
156

In addition, social media can generate a discussion archive that is useful for 

revisiting opinions, information, and collective history Furthermore, the manner in which social media are used by the community in the initial stages of 

engagement might be a barometer of the capacity to engage that community 

and success in doing so, facilitating evaluation of community engagement

Generally, depending on how groups communicate, a broader group of participants can be engaged using social media than through traditional means, 

facilitating the process of establishing collective positions and strategies 

Specifically, social media can provide a forum for interaction and discussion 

about both draft and final position statements Clearly, social media also 

play an important role in building and sustaining networks by facilitating 

ongoing communication, social exchange, and coordination of activities 

Moreover, these media can help build trust by providing venues in which 

partners can demonstrate transparency and openness Meeting agendas, 

minutes, handouts, and questions (and responses) can all be posted and 

viewed

Finally, social media can be a tool for mobilizing organizations and community members and, even more important, social media can help sustain 

engagement and commitment Social media can also offer accessible sites 

to provide information about a developing engagement, such as its purpose 

and goals and who is involved (Bacon, 2009; Connor, 2009)

Cautions on the Use of Social Media

Many of the cautions about social media are similar to those for any community engagement activity (Bacon, 2009) For example, when appraising 

face-to-face interactions, we ask, are the responses honest? Will people have 

the time to participate? We need to ask those questions about the use of 

social media, too However, use of social media raises additional concerns 

about who is actually participating and whether they are who they represent 

themselves to be Building trust is essential for community engagement, 

and networking through social media alone is unlikely to achieve the level 

of trust needed for collective action Rather than being seen as a substitute 

for in-person interactions, social media may be better viewed as supplementary or complementary, particularly in the early stages of community 
157

engagement Furthermore, social media should not be regarded as an 

inexpensive alternative to the in-person building of relationships Like any 

community engagement effort, use of social media for communication engagement will take time (Connor, 2009) Overall, it is important to understand 

the modes of communication employed by the community of interest and 

then use those modes

Time is a particular concern for the person who plays the crucial role of 

moderating a social media forum It is the moderator’s job to demonstrate 

that someone is listening, keep the discussion developing, and recruit and 

retain members There are many ways in which an online community can 

be undermined, and it is the moderator’s job to enforce the “rules of engagement” Once established, a forum requires regular attention Given the pace 

of interactions in the social media environment, moderating a forum may 

require visiting the site several times a day (Bacon, 2009)

Recommendations about specific products have not been included in this 

chapter, because products continue to evolve Furthermore, although the 

discussion addresses how social media can be used, the question of whether 

or when it is appropriate to use specific social media is contingent 

upon the nature of the individual project, available resources, 

and the appropriateness of the tool for the particular community 

Given the resources necessary to involve social media, it would 

be a mistake to try to be “everywhere” Engagement is an iterative process; organizations should be selective, determine which 

media (if any) the community of interest are already using, and 

ask the community what approaches (if any) should be used and at what 

time in the engagement process social media should be introduced Like all 

decisions about community engagement strategies, decisions about the use 

of social media should be made by engaging the community

CONCLUSION

Social networks are an important tool for understanding a community and 

mobilizing it for health improvement New research literature has brought 

increased attention to the role that social networks can play in population 

Given the resources necessary to 

involve social media, it would be a 

mistake to try to be “everywhere.”
158

health, and the growing use of community-engaged health promotion and 

research has brought to the fore the potential for social networks to support collective action for health improvement Moreover, the emergence of 

electronic social media has diversified the ways in which networks can be 

formed and engaged “Networking,” whether in person or electronically, 

is not the same as creating, sustaining, or engaging a community; if done 

incorrectly, it can undermine rather than support collaborative efforts The 

principles laid out in this primer must be applied to the use of social networks just as they should be to all engagement efforts
159

REFERENCES

Arthur T The role of social networks: a novel hypothesis to explain the 

phenomenon of racial disparity in kidney transplantation American Journal 

of Kidney Diseases 2002;40(4):678-681

Bacon J The art of community: building the new age of participation (theory 

in practice) Sebastopol (CA): O’Reilly Media; 2009

Cattell V Poor people, poor places, and poor health: the mediating role of social 

networks and social capital Social Science and Medicine 2001;52:1501-1516

Christakis NA, Fowler JH The spread of obesity in a large social network 

over 32 years New England Journal of Medicine 2007;357(4):370-379

Cohen-Cole E, Fletcher JM Detecting implausible social network effects in 

acne, height, and headaches: longitudinal analysis BMJ 2008;337:a2533

Connor A 18 rules of community engagement: a guide for building relationships 

and connecting with customers online. Silicon Valley (CA): Happy About; 2009

Erwin DO, Johnson, VA, Trevino M, Duke K, Feliciano L, Jandorf L A 

comparison of African American and Latina social networks as indicators 

for culturally tailoring a breast and cervical cancer education intervention 

Cancer 2007;109(2 Suppl): 368-377

Fine A Igniting social change and the connected age. San Francisco: JosseyBass; 2006

Hatcher MT, Nicola RM Building constituencies for public health In: Novick 

LF, Morrow CB, Mays GP (editors) Public health administration: principles for 

population-based management (2nd ed, pp 443-458) Sudbury (MA): Jones 

and Bartlett; 2008

House JS, Umberson D, Landis K Structures and processes of social support 

Annual Review of Sociology 1998;14:293-318

Pachucki M, Breiger, R Cultural holes: beyond relationality in social networks 

and culture Annual Review of Sociology 2010;36:205-224
160

Pan RJ, Littlefield D, Valladolid SG, Tapping PJ, West DC Building healthier 

communities for children and families: applying asset-based community 

development to community pediatrics Pediatrics 2005;115(4 Suppl):1185-1187

Putnam RD Bowling alone: America’s declining social capital Journal of 

Democracy 1995;6(1):65-78

Wasserman S, Faust K Social network analysis: methods and applications. 

Cambridge, United Kingdom: Cambridge University; 1994

Zilberberg MD The clinical research enterprise: time to change course? 

JAMA 2011;305(6):604-605
Program Evaluation and Evaluating 

Community Engagement
163

Chapter 7

Program Evaluation and Evaluating 

Community Engagement

Meryl Sufian, PhD (Chair), Jo Anne Grunbaum, EdD (Co-Chair), Tabia Henry Akintobi, PhD, 

MPH, Ann Dozier, PhD, Milton (Mickey) Eder, PhD, Shantrice Jones, MPH, Patricia Mullan, 

PhD, Charlene Raye Weir, RN, PhD, Sharrice White-Cooper, MPH

BACKGROUND

A common theme through Chapters 1−6 was that community engagement 

develops over time and that its development is largely based on ongoing 

co-learning about how to enhance collaborations The evaluation of community engagement programs provides an opportunity to assess and enhance 

these collaborations Community members can be systematically engaged 

in assessing the quality of a community-engaged initiative, measuring its 

outcomes, and identifying opportunities for improvement

This chapter summarizes the central concepts in program evaluation relevant to community engagement programs, including definitions, categories, 

approaches, and issues to anticipate The chapter is not intended as a comprehensive overview of program evaluation; instead, the focus is on the 

importance of evaluating community-engaged initiatives and methods for 

this evaluation With this in mind, Chapter 7 will present the following: 

(1) a definition of evaluation, (2) evaluation phases and processes, (3) two 
164

approaches to evaluation that are particularly relevant for the evaluation 

of community-engaged initiatives, (4) specific evaluation methods, and 

(5) challenges to be overcome to ensure an effective evaluation Stakeholder 

engagement (ie, inclusion of persons involved in or affected by programs) 

constitutes a major theme in the evaluation frameworks In addition, 

methodological approaches and recommendations for communication and 

dissemination will be included Examples are used throughout the chapter 

for illustrative purposes

PROGRAM EVALUATION

Program evaluation can be defined as “the systematic collection of information 

about the activities, characteristics, and outcomes of programs, for use by 

people to reduce uncertainties, improve effectiveness, and make decisions” 

(Patton, 2008, p 39) This utilization-focused definition guides us toward 

including the goals, concerns, and perspectives of program stakeholders The 

results of evaluation are often used by stakeholders to improve or increase 

capacity of the program or activity Furthermore, stakeholders can identify 

program priorities, what constitutes “success,” and the data sources that 

could serve to answer questions about the acceptability, possible participation levels, and short- and long-term impact of proposed programs

The community as a whole and individual community groups are both key 

stakeholders for the evaluation of a community engagement program This 

type of evaluation needs to identify the relevant community and establish its 

perspectives so that the views of engagement leaders and all the important 

components of the community are used to identify areas for improvement 

This approach includes determining whether the appropriate persons or 

organizations are involved; the activities they are involved in; whether 

participants feel they have significant input; and how engagement develops, 

matures, and is sustained

Program evaluation uses the methods and design strategies of traditional 

research, but in contrast to the more inclusive, utility-focused approach of 

evaluation, research is a systematic investigation designed to develop or 

contribute to generalizable knowledge (MacDonald et al, 2001) Research is 

hypothesis driven, often initiated and controlled by an investigator, concerned 
165

with research standards of internal and external validity, and designed to 

generate facts, remain value-free, and focus on specific variables Research 

establishes a time sequence and control for potential confounding variables 

Often, the research is widely disseminated Evaluation, in contrast, may or 

may not contribute to generalizable knowledge The primary purposes of an 

evaluation are to assess the processes and outcomes of a specific initiative 

and to facilitate ongoing program management Evaluation of a program 

usually includes multiple measures that are informed by the contributions 

and perspectives of diverse stakeholders

Evaluation can be classified into five types by intended use: formative, process, 

summative, outcome, and impact Formative evaluation provides information to guide program improvement, whereas process evaluation 

determines whether a program is delivered as intended to the 

targeted recipients (Rossi et al, 2004) Formative and process 

evaluations are appropriate to conduct during the implementation of a program Summative evaluation informs judgments 

about whether the program worked (ie, whether the goals and 

objectives were met) and requires making explicit the criteria and 

evidence being used to make “summary” judgments Outcome 

evaluation focuses on the observable conditions of a specific population, 

organizational attribute, or social condition that a program is expected to 

have changed Whereas outcome evaluation tends to focus on conditions 

or behaviors that the program was expected to affect most directly and 

immediately (ie, “proximal” outcomes), impact evaluation examines the 

program’s long-term goals Summative, outcome, and impact evaluation are 

appropriate to conduct when the program either has been completed or has 

been ongoing for a substantial period of time (Rossi et al, 2004)

For example, assessing the strategies used to implement a smoking cessation program and determining the degree to which it reached the target 

population are process evaluations In contrast, an outcome evaluation of 

a smoking cessation program might examine how many of the program’s 

participants stopped smoking as compared with persons who did not participate Reduction in morbidity and mortality associated with cardiovascular 

disease may represent an impact goal for a smoking cessation program 

(Rossi et al, 2004)

Evaluation can be classified 

into five types by intended use: 

formative, process, summative, 

outcome, and impact.
166

Several institutions have identified guidelines for an effective evaluation 

For example, in 1999, CDC published a framework to guide public health 

professionals in developing and implementing a program evaluation (CDC, 

1999) The impetus for the framework was to facilitate the integration of 

evaluation into public health programs, but the framework focuses on six 

components that are critical for any evaluation Although the components 

are interdependent and might be implemented in a nonlinear order, the 

earlier domains provide a foundation for subsequent areas They include:

•	 	Engage	stakeholders	to	ensure	that	all	partners	invested	in	what	will	be	

learned from the evaluation become engaged early in the evaluation process

•	 	Describe	 the	program	 to	clearly	identify	its	goals	and	objectives.	This	

description should include the program’s needs, expected outcomes, activities, resources, stage of development, context, and logic model

•	 Design	the	evaluation	design	to	be	useful,	feasible,	ethical,	and	accurate.

•	 	Gather	credible	evidence	that	strengthens	the	results	of	the	evaluation	and	

its recommendations Sources of evidence could include people, documents, 

and observations

•	 	Justify	conclusions	that	are	linked	to	the	results	and	judged	against	standards or values of the stakeholders

•	 	Deliberately	ensure	use	of	the	evaluation	and	share	lessons	learned	from	it.

Five years before CDC issued its framework, the Joint Committee on Standards 

for Educational Evaluation (1994) created an important and practical resource 

for improving program evaluation The Joint Committee, a nonprofit coalition 

of major professional organizations concerned with the quality of program 

evaluations, identified four major categories of standards — propriety, utility, feasibility, and accuracy — to consider when conducting a program 

evaluation

Propriety standards focus on ensuring that an evaluation will be conducted 

legally, ethically, and with regard for promoting the welfare of those involved 
167

in or affected by the program evaluation In addition to the rights of human 

subjects that are the concern of institutional review boards, propriety standards promote a service orientation (ie, designing evaluations to address 

and serve the needs of the program’s targeted participants), fairness in identifying program strengths and weaknesses, formal agreements, avoidance 

or disclosure of conflict of interest, and fiscal responsibility

Utility standards are intended to ensure that the evaluation will meet the 

information needs of intended users Involving stakeholders, using credible evaluation methods, asking pertinent questions, including stakeholder 

perspectives, and providing clear and timely evaluation reports represent 

attention to utility standards

Feasibility standards are intended to make sure that the evaluation’s scope 

and methods are realistic The scope of the information collected should 

ensure that the data provide stakeholders with sufficient information to 

make decisions regarding the program

Accuracy standards are intended to ensure that evaluation reports use valid 

methods for evaluation and are transparent in the description of those methods Meeting accuracy standards might, for example, include using mixed 

methods (eg, quantitative and qualitative), selecting justifiable informants, 

and drawing conclusions that are consistent with the data

Together, the CDC framework and the Joint Committee standards provide 

a general perspective on the characteristics of an effective evaluation Both 

identify the need to be pragmatic and serve intended users with the goal of 

determining the effectiveness of a program

EVALUATION PHASES AND PROCESSES

The program evaluation process goes through four phases — planning, 

implementation, completion, and dissemination and reporting — that 

complement the phases of program development and implementation Each 

phase has unique issues, methods, and procedures In this section, each of 

the four phases is discussed
168

Planning

The relevant questions during evaluation planning and implementation 

involve determining the feasibility of the evaluation, identifying stakeholders, 

and specifying short- and long-term goals For example, does the program 

have the clarity of objectives or transparency in its methods required for 

evaluation? What criteria were used to determine the need for the program? Questions asked during evaluation planning also should consider 

the program’s conceptual framework or underpinnings For example, does 

a proposed community-engaged research program draw on “best practices” 

of other programs, including the characteristics of successful researchercommunity partnerships? Is the program gathering information to ensure 

that it works in the current community context?

Defining and identifying stakeholders is a significant component 

of the planning stage Stakeholders are people or organizations 

that have an interest in or could be affected by the program 

evaluation They can be people who are involved in program 

operations, people who are served or affected by the program, 

or the primary users of the evaluation The inclusion of stakeholders in an evaluation not only helps build support for the evaluation but 

also increases its credibility, provides a participatory approach, and supplies 

the multiple perspectives of participants and partners (Rossi et al, 2004)

Stakeholders might include community residents, businesses, communitybased organizations, schools, policy makers, legislators, politicians, educators, 

researchers, media, and the public For example, in the evaluation of a 

program to increase access to healthy food choices in and near schools, 

stakeholders could include store merchants, school boards, zoning commissions, parents, and students Stakeholders constitute an important resource 

for identifying the questions a program evaluation should consider, selecting 

the methodology to be used, identifying data sources, interpreting findings, 

and implementing recommendations (CDC, 1999)

Once stakeholders are identified, a strategy must be created to engage them 

in all stages of the evaluation Ideally, this engagement takes place from 

the beginning of the project or program or, at least, the beginning of the 

evaluation The stakeholders should know that they are an important part 

Defining and identifying 

stakeholders is a significant 

component of the planning stage.
169

of the evaluation and will be consulted on an ongoing basis throughout its 

development and implementation The relationship between the stakeholders 

and the evaluators should involve two-way communication, and stakeholders should be comfortable initiating ideas and suggestions One strategy to 

engage stakeholders in community programs and evaluations is to establish 

a community advisory board to oversee programs and evaluation activities 

in the community This structure can be established as a resource to draw 

upon for multiple projects and activities that involve community engagement

An important consideration when engaging stakeholders in an evaluation, 

beginning with its planning, is the need to understand and embrace cultural 

diversity Recognizing diversity can improve the evaluation and ensure that 

important constructs and concepts are measured

Implementation — Formative and Process Evaluation

Evaluation during a program’s implementation may examine whether the 

program is successfully recruiting and retaining its intended participants, 

using training materials that meet standards for accuracy and clarity, maintaining its projected timelines, coordinating efficiently with other ongoing 

programs and activities, and meeting applicable legal standards Evaluation 

during program implementation could be used to inform mid-course corrections to program implementation (formative evaluation) or to shed light 

on implementation processes (process evaluation)

For community-engaged initiatives, formative and process evaluation can 

include evaluation of the process by which partnerships are created and 

maintained and ultimately succeed in functioning

Completion — Summative, Outcome, and Impact Evaluation

Following completion of the program, evaluation may examine its immediate outcomes or long-term impact or summarize its overall performance, 

including, for example, its efficiency and sustainability A program’s outcome 

can be defined as “the state of the target population or the social conditions 

that a program is expected to have changed,” (Rossi et al, 2004, p 204) 

For example, control of blood glucose was an appropriate program outcome 

when the efficacy of empowerment-based education of diabetes patients 
170

was evaluated (Anderson et al, 2009) In contrast, the number of people 

who received the empowerment education or any program service would 

not be considered a program outcome unless participation in and of itself 

represented a change in behavior or attitude (eg, participating in a program to treat substance abuse) Similarly, the number of elderly housebound 

people receiving meals would not be considered a program outcome, but 

the nutritional benefits of the meals actually consumed for the health of the 

elderly, as well as improvements in their perceived quality of life, would be 

appropriate program outcomes (Rossi et al, 2004) Program evaluation also 

can determine the extent to which a change in an outcome can be attributed 

to the program If a partnership is being evaluated, the contributions of that 

partnership to program outcomes may also be part of the evaluation The 

CBPR model presented in Chapter 1 is an example of a model that could be 

used in evaluating both the process and outcomes of partnership

Once the positive outcome of a program is confirmed, subsequent 

program evaluation may examine the long-term impact the 

program hopes to have For example, the outcome of a program 

designed to increase the skills and retention of health care workers 

in a medically underserved area would not be represented by the 

number of providers who participated in the training program, 

but it could be represented by the proportion of health care 

workers who stay for one year Reduction in maternal mortality 

might constitute the long-term impact that such a program would hope to 

effect (Mullan, 2009)

Dissemination and Reporting

To ensure that the dissemination and reporting of results to all appropriate 

audiences is accomplished in a comprehensive and systematic manner, one 

needs to develop a dissemination plan during the planning stage of the evaluation This plan should include guidelines on who will present results, which 

audiences will receive the results, and who will be included as a coauthor on 

manuscripts and presentations

Dissemination of the results of the evaluation requires adequate resources, 

such as people, time, and money Finding time to write papers and make 

Once the positive outcome of a 

program is confirmed, subsequent 

program evaluation may examine 

the long-term impact the program 

hopes to have.
171

presentations may be difficult for community members who have other commitments (Parker et al, 2005) In addition, academics may not be rewarded 

for nonscientific presentations and may thus be hesitant to spend time on 

such activities Additional resources may be needed for the translation of 

materials to ensure that they are culturally appropriate

Although the content and format of reporting may vary depending on the 

audience, the emphasis should be on full disclosure and a balanced assessment so that results can be used to strengthen the program Dissemination 

of results may also be used for building capacity among stakeholders

APPROACHES TO EVALUATION

Two approaches are particularly useful when framing an evaluation of 

community engagement programs; both engage stakeholders In one, the 

emphasis is on the importance of participation; in the other, it is on empowerment The first approach, participatory evaluation, actively engages the 

community in all stages of the evaluation process The second approach, 

empowerment evaluation, helps to equip program personnel with the necessary skills to conduct their own evaluation and ensure that the program 

runs effectively This section describes the purposes and characteristics of 

the two approaches

Participatory Evaluation

Participatory evaluation can help improve program performance by (1) 

involving key stakeholders in evaluation design and decision making, (2) 

acknowledging and addressing asymmetrical levels of power and voice 

among stakeholders, (3) using multiple and varied methods, (4) having an 

action component so that evaluation findings are useful to the program’s 

end users, and (5) explicitly aiming to build the evaluation capacity of 

stakeholders (Burke, 1998)

Characteristics of participatory evaluation include the following (Patton, 2008):

•	 	The	 focus	is	on	participant	ownership;	 the	evaluation	is	oriented	 to	 the	

needs of the program stakeholders rather than the funding agency
172

•	 	Participants	meet	to	communicate	and	negotiate	to	reach	a	consensus	on	

evaluation results, solve problems, and make plans to improve the program

•	 Input	is	sought	and	recognized	from	all	participants.

•	 	The	emphasis	is	on	identifying	lessons	learned	to	help	improve	program	

implementation and determine whether targets were met

•	 	The	evaluation	design	is	flexible	and	determined	(to	the	extent	possible)	

during the group processes

•	 	The	evaluation	is	based	on	empirical	data	 to	determine	what	happened

and why

•	 	Stakeholders	may	conduct	the	evaluation	with	an	outside	expert	serving	

as a facilitator

Empowerment Evaluation

Empowerment evaluation is an approach to help ensure program success 

by providing stakeholders with tools and skills to evaluate their program 

and ensuring that the evaluation is part of the planning and 

management of the program (Fetterman, 2008) The major goal 

of empowerment evaluation is to transfer evaluation activities 

from an external evaluator to the stakeholders Empowerment 

evaluation has four steps: (1) taking stock of the program and 

determining where it stands, including its strengths and weaknesses; (2) establishing goals for the future with an explicit 

emphasis on program improvement; (3) developing strategies to 

help participants determine their own strengths that they can 

use to accomplish program goals and activities; and (4) helping program 

participants decide on and gather the evidence needed to document progress 

toward achieving their goals (Fetterman, 1994)

Characteristics of empowerment evaluation include the following (Wandersman 

et al, 2005):

The major goal of empowerment 

evaluation is to transfer evaluation 

activities from an external 

evaluator to the stakeholders.
173

•	 	Values	improvement	in	people,	programs,	and	organizations	to	help	them	

achieve results

•	 	Community	ownership	of	the	design	and	conduct	of	the	evaluation	and	

implementation of the findings

•	 	Inclusion	of	appropriate	participants	from	all	levels	of	the	program,	funders,	

and community

•	 	Democratic	participation	and	clear	and	open	evaluation	plans	and	methods.

•	 	Commitment	to	social	justice	and	a	fair	allocation	of	resources,	opportunities, obligations, and bargaining power

•	 	Use	of	community	knowledge	to	understand	the	local	context	and	to	interpret results

•	 	Use	of	evidence-based	strategies	with	adaptations	to	the	local	environment	

and culture

•	 	Building	the	capacity	of	program	staff	and	participants	to	improve	their	

ability to conduct their own evaluations

•	 	Organizational	learning,	ensuring	that	programs	are	responsive	to	changes	

and challenges

•	 Accountability	to	funders’	expectations.

Potential Disadvantages of Participatory and Empowerment Evaluation

The potential disadvantages of participatory and empowerment evaluation 

include (1) the possibility that the evaluation will be viewed as less objective 

because of stakeholder involvement, (2) difficulties in addressing highly technical aspects, (3) the need for time and resources when involving an array of 

stakeholders, and (4) domination and misuse by some stakeholders to further 

their own interests However, the benefits of fully engaging stakeholders 

throughout the evaluation outweigh these concerns (Fetterman et al, 1996)
174

Table 7.1. Types of Evaluation Questions by Evaluation Phase 

TYPES OF EVALUATION QUESTIONS

Evaluation Stage Quantitative Qualitative

Planning What is the prevalence of the problem? What are the values of the different stakeholders?

What are the expectations and goals of participants?

Implementation How many individuals are participating?

What are the changes in performance?

How many/what resources are used during implementation?

How are participants experiencing the change?

How does the program change the way individuals relate to or feel 

about each other?

To what extent is the intervention culturally and contextually valid?

Outcome Is there a change in quality of life?

Is there a change in biological and health measures?

Is there a difference between those who were involved in the 

intervention and those who were not?

How has the culture changed?

What themes underscore the participant’s experience?

What metaphors describe the change?

What are the participant’s personal stories?

Were there any unanticipated benefits?

References: Holland et al, 2005; Steckler et al, 1992

EVALUATION METHODS

An evaluation can use quantitative or qualitative data, and often includes 

both Both methods provide important information for evaluation, and 

both can improve community engagement These methods are rarely used 

alone; combined, they generally provide the best overview of the project 

This section describes both quantitative and qualitative methods, and Table 

71 shows examples of quantitative and qualitative questions according to 

stage of evaluation

Quantitative Methods

Quantitative data provide information that can be counted to answer such 

questions as “How many?”, “Who was involved?”, “What were the outcomes?”, 

and “How much did it cost?” Quantitative data can be collected by surveys 

or questionnaires, pretests and posttests, observation, or review of existing 

documents and databases or by gathering clinical data Surveys may be 
175

self- or interviewer-administered and conducted face-to-face or by telephone, 

by mail, or online Analysis of quantitative data involves statistical analysis, 

from basic descriptive statistics to complex analyses

Quantitative data measure the depth and breadth of an implementation (eg, 

the number of people who participated, the number of people who completed 

the program) Quantitative data collected before and after an intervention 

can show its outcomes and impact The strengths of quantitative data for 

evaluation purposes include their generalizability (if the sample represents 

the population), the ease of analysis, and their consistency and precision 

(if collected reliably) The limitations of using quantitative data for evaluation can include poor response rates from surveys, difficulty obtaining 

documents, and difficulties in valid measurement In addition, quantitative 

data do not provide an understanding of the program’s context and may not 

be robust enough to explain complex issues or interactions (Holland et al, 

2005; Garbarino et al, 2009)

Qualitative Methods

Qualitative data answer such questions as “What is the value added?”, “Who 

was responsible?”, and “When did something happen?’’ Qualitative data are 

collected through direct or participant observation, interviews, focus groups, 

and case studies and from written documents Analyses of qualitative data 

include examining, comparing and contrasting, and interpreting patterns 

Analysis will likely include the identification of themes, coding, clustering 

similar data, and reducing data to meaningful and important points, such 

as in grounded theory-building or other approaches to qualitative analysis 

(Patton, 2002)

Observations may help explain behaviors as well as social context and meanings because the evaluator sees what is actually happening Observations 

can include watching a participant or program, videotaping an intervention, 

or even recording people who have been asked to “think aloud” while they 

work (Ericsson et al, 1993)

Interviews may be conducted with individuals alone or with groups of people 

and are especially useful for exploring complex issues Interviews may be 

structured and conducted under controlled conditions, or they may be 
176

conducted with a loose set of questions asked in an open-ended manner It may 

be helpful to tape-record interviews, with appropriate permissions, to facilitate 

the analysis of themes or content Some interviews have a specific focus, 

such as a critical incident that an individual recalls and describes in detail 

Another type of interview focuses on a person’s perceptions and motivations

Focus groups are run by a facilitator who leads a discussion among a group 

of people who have been chosen because they have specific characteristics 

(eg, were clients of the program being evaluated) Focus group participants 

discuss their ideas and insights in response to open-ended questions from the facilitator The strength of this method is that 

group discussion can provide ideas and stimulate memories 

with topics cascading as discussion occurs (Krueger et al, 2000; 

Morgan, 1997)

The strengths of qualitative data include providing contextual 

data to explain complex issues and complementing quantitative 

data by explaining the “why” and “how” behind the “what” The 

limitations of qualitative data for evaluation may include lack 

of generalizability, the time-consuming and costly nature of data collection, and the difficulty and complexity of data analysis and interpretation 

(Patton, 2002)

Mixed Methods

The evaluation of community engagement may need both qualitative and 

quantitative methods because of the diversity of issues addressed (eg, 

population, type of project, and goals) The choice of methods should fit 

the need for the evaluation, its timeline, and available resources (Holland 

et al, 2005; Steckler et al, 1992)

EVALUATING THE COMMUNITY ENGAGEMENT PROCESS

In addition to ensuring that the community is engaged in the evaluation 

of a program, it is important to evaluate community engagement and its 

implementation The purpose of this type of evaluation is to determine if 

the process of developing, implementing, and monitoring an intervention 

or program is indeed participatory in nature

The evaluation of community 

engagement may need both 

qualitative and quantitative 

methods because of the diversity 

of issues addressed
177

Questions to ask when evaluating community engagement include the following (CDC, 2009; Green et al, 1995; Israel et al, 1998):

•	 	Are	 the	right	community	members	at	 the	 table?	This	is	a	question	 that	

needs to be reassessed throughout the program or intervention because 

the “right community members” might change over time

•	 	Does	the	process	and	structure	of	meetings	allow	for	all	voices	to	be	heard	

and equally valued? For example, where do meetings take place, at what 

time of day or night, and who leads the meetings? What is the mechanism 

for decision-making or coming to consensus; how are conflicts handled?

•	 	How	are	community	members	involved	in	developing	the	program	or	intervention? Did they help conceptualize the project, establish project goals, 

and develop or plan the project? How did community members help assure 

that the program or intervention is culturally sensitive?

•	 	How	are	community	members	involved	in	implementing	the	program	or	

intervention? Did they assist with the development of study materials or 

the implementation of project activities or provide space?

•	 	How	are	community	members	involved	in	program	evaluation	or	data	

analysis? Did they help interpret or synthesize conclusions? Did they help 

develop or disseminate materials? Are they coauthors on all publication or 

products?

•	 	What	kind	of	learning	has	occurred,	for	both	the	community	and	the	academics? Have community members learned about evaluation or research 

methods? Have academics learned about the community health issues? Are 

there examples of co-learning?

As discussed in Chapter 6, social network analysis (SNA) is a mixed method 

that can be applied to the evaluation of community partnerships and community engagement (Freeman et al, 2006; Wasserman et al, 1994) This 

method looks at social relationships or connections and the strength of 

these connections The relationships may be among a variety of entities, 

including people, institutions, and organizations Methods that assess the 

linkages between people, activities, and locations are likely to be useful 
178

for understanding a community and its structure SNA provides a set of 

tools for quantifying the connections between people based on ratings of 

similarity, frequency of interaction, or some other metric of interest The 

resultant pattern of connections is displayed as a visual graphic of interacting 

entities depicting the interactions and their strength Data for SNA may be 

collected through secondary (existing) sources or primary (new) sources, 

such as interviews and surveys SNA is a useful approach to the evaluation 

of community partnerships and their sustainability as well as the impact 

of the partnership on community engagement (Wasserman et al, 1994) It 

is also useful in formative work to understand social networks and in planning and implementing organizational structures to facilitate community 

engagement initiatives as discussed in Chapter 4

CHALLENGES

Engaging the community in developing and implementing a program evaluation can improve the quality and sustainability of the program However, 

several challenges must be overcome to ensure an appropriate and effective evaluation First, it is critical to have all stakeholders at the table from 

the conceptualization of the evaluation through implementation, analysis, 

and dissemination of the evaluation’s results Second, adequate organizational structures and resources are essential to engage the community in 

the evaluation, conduct it, and analyze and disseminate the results (see 

Chapter 4) Third, an evaluation that appropriately engages the community 

has the many benefits described in this chapter, but it takes more time than 

an evaluation conducted without community input Fourth, different work 

styles and institutional cultures may make it difficult to develop or follow 

through on shared expectations or the meaningful reporting of results 

Fifth, it is important that all persons involved understand that although the 

evaluation may identify problems and limitations that make them uncomfortable, addressing those issues can contribute to the program’s improvement 

Finally, an appropriate evaluation design and methodology should be used
179

CONCLUSION

Program evaluation can take a variety of forms and serve a variety of purposes, ranging from helping to shape a program to learning lessons from its 

implementation or outcomes Engaging stakeholders throughout the evaluation process improves the evaluation and positions these stakeholders to 

implement necessary changes as identified through the evaluation Both 

participatory and empowerment evaluation are built on this insight and 

prescribe specific approaches to stakeholder involvement that are consistent 

with the principles of community engagement Evaluating communityengaged partnerships in and of themselves is an emerging area In addition, 

SNA and formal models of engagement may provide useful frameworks for 

evaluating engagement
180

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Anderson RM, Funnell MM, Aikens JE, Krein SL, Fitzgerald JT, Nwankwo 

R, et al Evaluating the efficacy of an empowerment-based self-management 

consultant intervention: results of a two-year randomized controlled trial 

Therapeutic Patient Education 2009;1(1):3-11

Burke B Evaluating for a change: reflections on participatory methodology 

New Directions for Evaluation 1998;(80):43-56

Centers for Disease Control and Prevention Framework for program evaluation 

in public health Morbidity and Mortality Weekly Report 1999;48(RR11):1-40

Centers for Disease Control and Prevention Prevention Research Centers: 

Evaluation results: Program context. Atlanta (GA): Centers for Disease 

Control and Prevention; 2009 Retrieved from http://wwwcdcgov/prc/pdf/

esfall2009-fullpdf

Ericsson KA, Simon HA Protocol analysis. Cambridge (MA): Massachusetts 

Institute of Technology; 1993

Fetterman DM Steps of empowerment evaluation: from California to Cape 

Town Evaluation and Program Planning 1994;17(3):305-313

Fetterman DM, Kaftarian SJ, Wandersman A Empowerment evaluation: 

knowledge and tools for self-assessment and accountability. Thousand Oaks 

(CA): Sage; 1996

Fetterman DM Empowerment evaluation: An introduction to process use.

2008 Retrieved from http://wwwrripdxedu/fetterman_empowerment_

10-2008pdf

Freeman J, Audia P Community ecology and the sociology of organizations 

Sociology 2006;32:145-169

Garbarino S, Holland J Quantitative and qualitative methods in impact evaluation and measuring results. Social Development Direct; 2009 Retrieved from 

http://wwwgsdrcorg/docs/open/EIRS4pdf
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Green LW, George MA, Daniel M, Frankish CJ, Herbert CP, Bowie WR, et 

al Study of participatory research in health promotion: review and recommendations for the development of participatory research in health promotion in 

Canada. Ottawa, Canada: The Royal Society of Canada; 1995

Holland J, Campbell J (editors) Methods in development research: combining qualitative and quantitative approaches. London, United Kingdom: ITDG 

Publications; 2005

Israel BA, Shulz AJ, Parker EA, Becker AB Review of community-based 

research: Assessing partnership approaches to improve public health Annual 

Review of Public Health 1998;19:173-202

Joint Committee on Standards for Educational Evaluation, Sanders J (editors) 

The program evaluation standards: how to assess evaluations of educational 

programs (2nd ed) Thousand Oaks (CA): Sage; 1994

Krueger R, Casey M Focus groups: a practical guide for applied research (3rd 

ed) Thousand Oaks (CA): Sage; 2000

MacDonald G, Starr G, Schooley M, Yee SL, Klimowski K, Turner K Introduction 

to program evaluation for comprehensive tobacco control programs. Atlanta (GA): 

Centers for Disease Control and Prevention; 2001

Morgan D Focus groups and qualitative research. Newbury Park (CA): Sage; 

1997

Mullan PB Working to reduce maternal mortality in Sub-Saharan Africa: 

international fellowship program for Ghanaian physicians Medical Education 

at Michigan 2009;5(2):16 Retrieved from http://wwwmedumichedu/meded/

pdf/Newsletters/12-2009pdf

Parker E, Robins TG, Israel BA, Brakefield-Caldwell W, Edgren K, Wilkins 

D Developing and implementing guidelines for dissemination In: Israel BA, 

Eng E, Schulz AJ, Parker EA (editors) Methods in community-based participatory research for health. San Francisco: Jossey-Bass; 2005
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Patton MQ Qualitative evaluation and research methods. Newbury Park (CA): 

Sage; 2002

Patton MQ Utilization focused evaluation (4th ed) Saint Paul (MN): 

Sage; 2008

Rossi P, Lipsey M, Freeman H Evaluation: a systemic approach (7th ed) 

Thousand Oaks (CA): Sage; 2004

Steckler A, McLeroy KR, Goodman RM, Bird ST, McCormick L Toward 

integrating qualitative and quantitative methods: an introduction Health 

Education Quarterly 1992;19(1):1-8

Wandersman A, Snell-Johns J, Lentz B, Fetterman D, Keener D, Livet M, 

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Summary
185

Chapter 8

Summary

Donna Jo McCloskey, RN, PhD, and Mina Silberberg, PhD

This primer presents the case for community engagement in health promotion and research and provides guidelines for its practice It emphasizes the 

need to articulate the purpose and goals of the engagement initiative, assess 

community capacity and one’s own capacity for community engagement, 

and build or leverage community assets for health improvement Community 

engagement, like any other initiative, needs to be implemented with a plan 

of action that is goal and context based The stakeholders engaged, the 

strategy and approach used to gain their involvement, and the resources 

needed all depend on the purpose and outcomes desired and on knowledge 

of the community and the partners

Community engagement may or may not be a new way of doing business 

for a given individual or entity If it is new, it may mean changing the way 

organizations, individuals, and practices make decisions about programs and 

resource allocation It may also mean developing partnerships, coalitions, 

and collaborative efforts with new people and organizations Before action 

can occur, engagement leaders need to consider and develop a management 

strategy
186

Assessing an organization’s capacity for engaging the community involves 

looking at:

•	 	The	values	of	the	organization:	Does	it	perceive	involving	the	community	

in identifying community health issues and developing programs as important? Does it recognize the importance of partnering and collaborating 

with other groups or community-based organizations?

•	 	The	intent	of	the	organization:	What	does	the	organization	want	to	accomplish? What is the best way to establish its position and select strategies 

to begin community action?

•	 	The	operations	of	the	organization:	Is	it	already	working	with	the	community on specific programs or issues? How? Are there existing collaborations 

with other institutions or agencies? Are community leaders or representatives already involved in decision making related to program planning, 

implementation, and evaluation?

•	 	The	resources	and	expertise	available	to	support	an	engagement	effort:	

What mechanisms will be in place to ensure that relevant data on community needs will be used? What financial resources will be required? 

Which staff are most skilled or already have strong ties to the community?

In articulating the purposes or goals of a community engagement effort, 

there is value in thinking through a few key issues:

•	 	Know	what	is	of	interest	and	what	community	involvement	is	expected	

to accomplish For example, is the goal a broad one, such as engaging 

the community in assessing its health status, identifying concerns, and 

developing and implementing action plans, or is it more narrow, such as 

engaging the community around specific health objectives?

•	 	Have	an	idea	about	how	the	community	should	be	involved.	Will	they	be	

advisors or co-decision makers or both? What might the structures and 

process be for their involvement?

•	 	Be	clear	on	the	community	to	be	engaged,	at	least	initially.	Is	it	a	geographic community, including all of those who live within its boundaries, 

or is it a community that is defined in some other way?
187

•	 	Know	the	extent	to	which	the	focus	of	the	community	engagement	efforts	

is flexible As more is learned about the community and issues of interest, it might be more effective or appropriate to focus engagement efforts 

on other populations or communities Similarly, goals may need to be 

modified based on community input

Finally, to learn about communities, you must:

•	 	Talk	with	stakeholders,	attend	community	meetings,	 read	community	

newspapers, and obtain information that is relevant to the engagement 

process

•	 Establish	relationships	and	build	trust.

Potential partners will be more likely to become involved in a community 

engagement effort, such as collaborative health promotion or research projects, if they understand what it means to become involved and believe their 

participation will be meaningful Using a community-engaged 

approach and working within communities requires a continual 

effort to balance costs and benefits and sustain cooperation 

and accountability among participating groups All interested 

individuals, groups, and organizations must feel they can join 

a community engagement effort and influence it This is the 

foundation for trust among collaborators If trust is not present, 

relationships are guarded and commitments tentative Therefore, relationships must be built that are inclusive of the entire community of interest

Being inclusive can create some organizing challenges However, successfully 

overcoming these challenges will provide a greater return on the investment 

made by engagement leaders through the greater involvement of partners 

and the assets they bring to the process One key challenge is managing the 

decision-making process When formal governance of the collaboration is 

needed, the community should be given an opportunity to shape the governance process and provide input on decisions to be made by the governing 

structure Another important approach to creating and maintaining a sense 

that participation is worthwhile is to use collaborative strategies that can 

achieve a small success quickly and reinforce the benefit of participation 

With time, collaborations may evolve from these “small beginnings” and 

All interested individuals, groups, 

and organizations must feel they 

can join a community engagement 

effort	and	influence	it.
188

grow into more ambitious efforts Over time, it may be appropriate for an 

entity to move away from a position as a lead stakeholder to become simply 

one of many partners in a broader effort In addition, stakeholders may find 

that they no longer need to reach out to involve a community because that 

community is now coming to them Over time, engagement leaders may 

also need to reexamine and revise the purpose, goals, and strategies of the 

collaborative Engagement leaders may find that it is time to broaden the 

participation and engage new communities on new issues while nurturing 

existing collaborations

CONCLUSION

The contributors to this second edition of Principles of Community Engagement 

hope that it will provide all stakeholders with greater insight into the science and practice of community engagement and the implementation of 

community-engaged initiatives These insights should help prepare those 

interested in community engagement to practice in the diverse situations that 

communities face Most importantly, the insights provided in this primer 

should help prepare engagement leaders to make decisions that improve 

health, reduce disparities, and enhance quality of life
Appendix A:

Acronyms
191

APPENDIX A: ACRONYMS

AAHIP African-American Health Improvement Partnership

ACE Active Community Engagement

ACQUIRE Access, Quality and Use in Reproductive Health

AHRQ Agency for Healthcare Research and Quality

ALA American Lung Association

AME African Methodist Episcopal

ATSDR Agency for Toxic Substances and Disease Registry

CAB community advisory board

CAC community advisory committee

CACHÉ Community Action for Child Health Equity

CAN DO C hildren And Neighbors Defeat Obesity/la Comunidad 

Ayudando a los Niños a Derrotar la Obesidad

CARE Community Alliance for Research and Engagement

CBO community-based organization

CBPR community-based participatory research

CCAT community coalition action theory

CCB Community Coalition Board

CCHN Community Child Health Network

 

 

 
192

CDC Centers for Disease Control and Prevention

CEnR community-engaged research

CHC Community Health Coalition

CHIC Community Health Improvement Collaborative

CTSA Clinical and Translational Science Awards

DCCR Duke Center for Community Research

DCH Division of Community Health

DEPLOY Diabetes Education & Prevention with a Lifestyle 

Intervention Offered at the YMCA

DPBRN Dental Practice-Based Research Network

DPP Diabetes Prevention Program

HAAF Healthy African American Families

HHP Hispanic Health Project

HOC Healing of the Canoe

HWA Houston Wellness Association

IRB institutional review board

IUSM Indiana University School of Medicine

JABGC John Avery Boys and Girls Club

JHCC Joyland-Highpoint Community Coalition

MOA memorandum of agreement

 

 
193

MUSC Medical University of South Carolina

MWC Mayor’s Wellness Council

NCCU North Carolina Central University

NICHD National Institute of Child Health and Human Development

NIH National Institutes of Health

N-O-T Not on Tobacco

NPU-Y Neighborhood Planning Unit Y

PA physical activity

PBR practice-based research

PBRN practice-based research network

PI principal investigator

PRC Prevention Research Center

RCT randomized controlled trial

SCC Suquamish Cultural Cooperative

SNA social network analysis

SuGAR Sea Island Genetic African American Registry

UCLA University of California, Los Angeles
NIH Publication No. 11-7782