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
 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
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: Community 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 189

iii
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

iv
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

v
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 essen-tial
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 U S Department of Health and

Human Services Its mission is making important medical discoveries that
improve health and save lives (www nih gov)

The Centers for Disease Control and Prevention is a part of the U S Department
of Health and Human Services and is the nation’s prevention agency Its mis-sion
is to promote health and quality of life by preventing and controlling disease,
injury, and disability (www cdc gov)

The Agency for Toxic Substances and Disease Registry is a part of the U S
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 sub-stances
from waste sites, unplanned releases, and other sources of pollution present in the
environment (www atsdr cdc gov)

vi
For further information on the CTSA Consortium and the Community
Engagement Key Function Committee, please visit www ctsaweb org

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

vii
Foreword
FOREWORD
As Surgeon General, I am privileged to serve as “America’s Doctor,” oversee-ing
the operations of the U S 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, pro-
viding 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, terminol-ogy, 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

xi
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, M D , M B A
Vice Admiral, U S Public Health Service
Surgeon General

xii
Executive Summary
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 com-
mittee developed the booklet Principles of Community Engagement, which was
published by CDC and ATSDR Principles defined community engage-ment 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 U S 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 agen-cies
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 U S Department

xv
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 refer-ring 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

xvi
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 (e g ,
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 commu-nity
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

xvii
REFERENCES

Ahmed SM, Palermo AG Community engagement in research: frame-works 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://www cdc gov/chronicdis-
ease/resources/publications/AAG/pdf/chronic pdf

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://www cdc gov/obesity/downloads/
obesity_trends_2009 pdf

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

xviii
Community Engagement:
Definitions and Organizing Concepts from the Literature
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 communica-tion, 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 environ-ments (Hanson,
1988; Institute of Medicine, 1988) This “ecological” view is consistent with the
idea that health inequalities have their roots in larger

3
 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 num-ber 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 collabora-tion among diverse groups as a strategy to
improve health

This emphasis on community engagement has encouraged health profession-als,

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
Moreover, community the available and relevant social science and public health litera-
ture, but it provides an overview of some of the critical organizing
engagement is grounded in concepts that shed light on the idea of community and the practice

the principles of community of community engagement Sociology, political science, cultural

anthropology, organizational development, psychology, social
organization: fairness, justice, work, and other disciplines have all contributed to the develop-

empowerment, participation, and ment and practice of community engagement (Minkler et al , 2009)
Moreover, community engagement is grounded in the principles
self-determination… of community organization: fairness, justice, empowerment, par-
ticipation, 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

4
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 organ-ism. 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, collabora-tion 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,

5
tracing social ties among individuals may help engagement leaders to iden-tify 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, indi-
viduals 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

6
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 com-munity 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 mem-bers 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 engagement can

community involvement Figure 1 1 below, modified from a dia-gram
take many forms, and partners
originally drawn by the International Association for Public
Participation, illustrates one way of thinking about such a con-tinuum can include organized groups,
Over time, a specific collaboration is likely to move along this
agencies, institutions, or
continuum toward greater community involvement, and any given
collaboration is likely to evolve in other ways, too Most notably, individuals. Collaborators may
while community engagement may be achieved during a time-limited
project, it frequently involves — and often evolves into be engaged in health promotion,

— long-term partnerships that move from the traditional focus on a research, or policy making.
single health issue to address a range of social, economic, political,
and environmental factors that affect health

7
 Increasing Level of Community Involvement, Impact, Trust, and Communication Flow

Outreach Consult Involve Collaborate Shared Leadership

Some Community More Community Better Community Community Involvement Strong Bidirectional
Involvement Involvement Involvement Relationship
Communication
Communication Communication flows to Communication flows flow is bidirectional Final decision making
flows from one to the community and then both ways, participatory is at community level.
Forms partnerships with
the other, to inform back, answer seeking form of communication
Entities have formed
community on each
Provides community Gets information or feed- Involves more aspect of project from strong partnership
with information. back from the community. participa-tion with development to solution. structures.
community on issues.
Entities share information. Entities form bidirectional Outcomes: Broader
Entities coexist.
Entities cooperate communication channels. health outcomes
Outcomes: Optimally, Outcomes: Develops with each other. affect-ing broader
establishes communica- con-nections. Outcomes: Partnership community. Strong
Outcomes: Visibility of building, trust building. bidirectional trust built.
tion channels and chan-
partnership established
nels for outreach.
with increased coopera-
tion.

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

Figure 1.1. Community Engagement Continuum

Why Practice Community Engagement?

Advocates of community engagement assert that it improves health promotion

and health research However, the processes, costs, and benefits of com-munity
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 collabo-ration are
identified, and funding that requires community engagement becomes
accessible

8
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 knowl-
edge 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 (e g , through new or improved ser-
vices, 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 pub-lic
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 knowl-

edge, 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

9
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 (e g , 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

10
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 individu-als 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.

To achieve successful collaboration with a community, all par-ties

involved need to strive to understand the point of view of “insiders,”
whether they are members of a neighborhood, reli-gious 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)

11
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 organiza-tions 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 com-munity
Often, the most empowered members of a community will quickly move to the
forefront, regardless of whether they are truly the most repre-sentative (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 com-munity (CARE: Community Alliance
for Research and Engagement, 2009)

Community organizing is based on the principles of empowerment, com-munity

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 impor-tant element of
community organizing is helping communities look at the

12
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
Meaningful community

participation extends beyond

physical involvement to include

generation of ideas, contributions

to decision making, and sharing of

responsibility.

Community engagement requires participation of community

members in projects that address their issues Meaningful com-
munity 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 commu-nity 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 par-
ticipation; 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 com-
munity 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)

13
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 mem-

bers who have a stake in and support public health and health care, involves four
“practice elements”:

14
• 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 think-ing
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.

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 col-
laboration 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 com-
munity 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

15
 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 organi-

Empowerment takes place at zation or group, and the community Empowerment at one level can
influence empowerment at the other levels Furthermore, empower-
three levels: the individual, ment is multidimensional, taking place in sociological,
psychological, economic, political, and other dimensions (Fawcett et
the organization or group, and
al , 1995; Hur, 2006; Maton, 2008; Rich et al , 1995) Community-
the 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 help-
ing 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 lit-
erature suggests that:

16
• 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 col-
lective 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)

17
 raises additional questions and challenges Community engage-ment
Community engagement is about is about relationships between and among communities, researchers,
and research institutions What ethical code should we use to assess
relationships between and among
the conduct of those relationships, and how should that code be
communities, researchers, and monitored and enforced? As CEnR has become more prevalent and
more varied, this fundamental question has generated a number of
research institutions. 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] 46 102(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 estab-lished Once
research has been approved, the IRB will not typically obtain community input
for its regular reviews of research protocols Furthermore,

18
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 impor-tant 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,

19
 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
The social ecological model
by the interaction between the individual, the group/ community, and
understands health to be affected the physical, social, and political environments (Israel et al , 2003;
by the interaction between the Sallis et al , 2008; Wallerstein et al , 2003)

individual, the group/community,

and the physical, social, and

political environments.

Both the community engagement approach and the social eco-logical

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 profession-als,
researchers, and community leaders can use this model to
identify factors at different levels (the individual, the interpersonal level, the
community, society; see Figure 1 2) that contribute to poor health and to develop
approaches to disease prevention and health promotion that include

20
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 com-
munity’s environment and personal attributes (e g , 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 influ-ence each other

• There are personal and environmental “leverage points,” such as the

physi-cal 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 1 2

Societal Community Relationship Individual

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

21
The first level of the model (at the extreme right) includes individual biol-ogy
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 inequali-ties between groups (CDC,
2007; Krug et al , 2002)

The CDC model enables community-engaged partnerships to identify a com-

prehensive 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 commu-

nity 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 employ-ers to develop
healthier food choices on site and to create other workplace health programs

22
• Soc iety: 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

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 U S 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 com-munity involvement in
assessment; access to information; inclusion in decision making; local
capacity to advocate to institutions and govern-ing 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

23
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 dif-fusion
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 pro-vides 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 innova-
tors, 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

24
According to Rogers, the characteristics that affect the likelihood that an inno-
vation 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 (i e , 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 Awareness of the stages of
innovations, and the characteristics that promote adoption can help
diffusion, the differing
engagement leaders match strategies to the readiness of stakeholders
For example, a community-engaged health promotion campaign responses to innovations, and
might include raising awareness about the severity of a health prob-
the characteristics that promote
lem (knowledge, the first stage in Rogers’ scheme), transforming
awareness into concern for the problem (persuasion), establishing a adoption can help engagement
community-wide intervention initiative (adoption), developing the
leaders match strategies to the
necessary infrastructure so that the provision of services remains
extensive and constant in reaching residents (implementation), and/ readiness of stakeholders.
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 1 1 (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

25
 Contexts
Socioeconomic, Cultural,
Geography & Environment

Group Dynamics Outcomes

National & Local Policies/
Equitable Partnerships
Trends/Governance Intervention
Fits Local/Cultural Beliefs, System & Capacity Changes
Historic Collaboration: Structural Community Agencies h Policies/Practices
Norms & Practices
Trust & Mistrust
Dynamics h Sustained Interventions
Relational Reflects Reciprocal Learning h Changes in Power Relations
Community Capacity
Dynamics
Individual h Cultural Renewal
& Readiness
Dynamics CBOs Appropriate Research Improved Health
University Design
University Capacity i Disparities
& Readiness
h Social Justice

Health Issue Importance

Contexts Group Dynamics Intervention Outcomes

• Social-economic, cultural, Structural Dynamics Relational Dynamics • Intervention adapted CBPR System & Capacity
geographic, political-histor- • Diversity • Safety or created within local Changes
ical, environmental factors • Complexity • Dialogue, listening & mutual culture • Changes in policies/
• Policies/Trends: National/ • Formal agreements learning • Intervention informed practices:
• Real power/resource • Leadership & stewardship - In universities and
local governance & political sharing • Influence & power dynamics by local settings and communities
climate • Alignment with CBPR • Flexibility organizations • Culturally based & sustainable
• Historic degree of collabo- principles • Self & collective reflection • Shared learning
• Length of time in • Participatory decision- interventions
ration and trust between partnership making & negotiation between academic and
university & community • Integration of local beliefs to community knowledge • Changes in power relations
• Community: capacity, Individual Dynamics group process • Research and evalu- • Empowerment:
readiness & experience • Core values • Flexibility ation design reflects - Community voices heard
• Motivations for • Task roles & communication partnership input
• University: capacity, readi- participating - Capacities of advisory
ness & reputation • Personal relationships • Bidirectional transla- councils
• Cultural identities/ tion, implementation &
• Perceived severity of health • humility dissemination - Critical thinking
issues Bridge people on • Cultural revitalization &
research team
• Individual beliefs, renewal
spirituality & meaning Health Outcomes
• Community reputation
of PI • Transformed social/economic
conditions
• Reduced health disparities

Used with permission from Minkler et al., 2008.

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

26
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 1 3) 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 part-
nership, 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 evalu-ate

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” (i e , 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 dif-ferent

authors in the field In one widely used schema, translational research is separated
into four segments: T1−T4 (Kon, 2008) T1 represents the transla-tion 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

27
 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
Like all efforts in engagement, contributed to the emergence of more specialized practice-based
developing PBR includes building research networks (e g , in nursing, dental care, and pharmacy)
Like all efforts in engagement, developing PBR includes building
trust, sharing decision making, trust, sharing decision making, and recognizing the expertise of

and recognizing the expertise of all partners PBR addresses three particular concerns about clinical
practice: identifying medical directives that, despite recommenda-
all partners. tions, are not being implemented; validating the effectiveness of
clinical interventions in community-based primary care settings;
and increasing the number of patients participating in evidence-
based treatments (Westfall et al , 2007) “PBR also provides the laboratory for a
range of research approaches that are sometimes better suited to trans-lational
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

28
• 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

long-term, 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)

29
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41
Principles of Community Engagement
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 constituen-cies
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 evaluat-ing community engagement
efforts Because community processes can be complex, challenging, and labor-
intensive, however, these health profession-als 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 1 This chapter was adapted
engagement, what is neces-sary for engagement to occur, and what to consider from the first edition of
Principles of Community
for engagement to be Engagement.

45
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 par-ticipation, 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, legisla-tion
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

infra-structure development, which will directly or indirectly contribute to
health improvements and disease prevention

46
• Ask community members to specify their health-related concerns, iden-
tify 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 dimen-

sions 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 ini-tially 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 col-laborations 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 pre-sented in Chapter 1
support this principle Social ecological theories, for example, emphasize the need
to understand the larger physical and social/

47
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 readi-ness
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 devel-

oped 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 con-
sider 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

48
 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.

trust for a true partnership Such meetings provide the organizers of engage-ment
activities with more information about the community, its concerns, and the
factors that will facilitate or constrain participation In addition, commu-nity
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 iden-
tified 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

49
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 (e g , 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 sig-nificantly 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

50
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

51
 the “trigger” for the engagement process (e g , 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 communi-ties develop the
necessary capacities (e g , 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
Community engagement will the many elements of a community that are needed for the
create changes in relationships action to be sustained while still creating a manageable process
Community engagement will create changes in relationships
and in the way institutions and and in the way institutions and individuals demonstrate their
individuals demonstrate their capacity and strength to act on specific issues In environments
characterized by dynamism and constant change, coalitions,

capacity and strength to act on networks, and new alliances are likely to emerge Efforts
made to
specific issues. 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 devel-opment

(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

52
difference in the health of the population Not surprisingly, building trust and
helping communities develop the capacity and infrastructure for suc-cessful
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 develop-ing 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 prob-ability 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 organi-zational
and community context in which it occurs The next chapter will provide
examples of how these principles have been applied in specific col-laborative
efforts

53
Successful Examples in the Field
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 representa-tives
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, emphasiz-ing 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

57
3 Project SuGAR
4 The Community Health Improvement Collaborative (CHIC)
5 Healing of the Canoe
6 Formando Nuestro Futuro/Shaping Our Future
7 Improving American Indian Cancer Surveillance and Data Reporting in
Wisconsin
8 Children 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 Diabetes Education & Prevention with a Lifestyle Intervention Offered at the
YMCA (DEPLOY) Pilot Study
11 Project Dulce
12 Determinants of Brushing Young Children’s Teeth

58
 TABLE 3.1. MATRIX OF CASE EXAMPLES1

The following matrix summarizes the principles of community engagement illustrated by each of the case studies. The rationale for the selection of principles is included in each example.

Principle 1 Principle 2 Principle 3 Principle 4 Principle 5 Principle 6 Principle 7 Principle 8 Principle 9

Case Example Be clear about Know the Build trust Collective self- Partnering with Recognize and Sustainability Be prepared Community
the population/ community, and relation- determination is the community respect com- results from mobi- to release collabora-
communities to including its ships and get the responsibil- is necessary to munity cultures lizing community control to the tion requires
be engaged and norms, history, commitments ity and right of create change and other assets and develop- community long-term
the goals of the and experience from formal all community and improve factors affecting ing capacities and and be flexible commitment
effort. with engage- and informal members. health. diversity in resources. enough to meet
ment efforts. leadership. designing and its changing
implementing needs.
approaches.
1. CACHÉ X X X X X X X X

2.Health-e-AME X X X X X
3. Project SuGAR X X X X X X X

4. CHIC X X X X X
5. Healing of the Canoe X X X X X

6. Formando Nuestro
Futuro/Shaping Our X X X X

Future
7. Improving American
Indian Cancer X X X X X

Surveillance and Data

Reporting in Wisconsin
8. CAN DO Houston X X X
9. The Dental Practice- X X X
59

Based Research Network

10. The DEPLOY Pilot Study X X X X
11. Project Dulce X X X X

12. Determinants of
Brushing Young X X
Children’s Teeth

1 The principles of community engagement have been abbreviated for this table
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 child-hood 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 sus-tainable 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, 7 1% 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

60
a mission statement written in the language of the CAC As CACHÉ transi-tioned
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 founda-tion
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 foun-dations
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 part-nership 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

61
including the collection of biospecimens against the advice of the CCHN but in
response to the needs of Lake County, the CACHÉ program exempli-fies
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 knowl-edgeable 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://www heartlandalliance org/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

www northshore org/research/priorities

www nichd nih gov/research/supported/cchn cfm

62
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 col-laborated 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 inter-

vention 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 signifi-
cantly 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 The successful partnership
AME church continues to this day through the newly formed FAN
between the researchers and
(Faith, Activity, and Nutrition) initiative Those wishing to participate in
partnerships between academic and faith-based organizations can glean the AME church continues to
useful information from Health-e-AME, including the process
this day through the newly
partnerships can use to develop, implement, and evaluate PA
interventions PA interventions that actively engage faith-based formed FAN (Faith, Activity,
organizations in decision making and program implementation are rare,
and Nutrition) initiative.
making this approach and the lessons learned unique

63
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, deci-sion 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 base-line 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

64
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.

65
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 meta-bolic 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 com-
mittee 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
Biomedical Research Excellence for Oral Health The local CAC adheres to the
principles of CBPR and advocates community input at the initial devel-opment 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 exem-

plifies 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, Lopes-Virella
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 Genome-wide
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

66
Websites

http://academicdepartments musc edu/sugar/progress htm

http://clinicaltrials gov/ct2/show/NCT00756769

http://academicdepartments musc edu/cobre/overview html

67
 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
The success of this collaboration infrastructure, the Los Angeles Community Health Improvement
Collaborative (CHIC) The purpose of CHIC was to encourage
led to the expansion of HAAF to
shared strategies, partnerships, and resources to support rigorous,
investigate other health issues, community-engaged health services research within Los Angeles
that was designed to reduce health disparities Partners in the
including preterm delivery, mental
collaborative were the RAND Health Program; the University of
health, diabetes, asthma, and California, Los Angeles (UCLA), branch of the Robert Wood
kidney disease, as well as to look Johnson Clinical Scholars Program at the David Geffen School of
Medicine; the UCLA Family Medicine Research Center; three NIH
at various women’s health centers (at UCLA, RAND, and Charles R Drew University of
projects. 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

68
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) modify-ing 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 collabo-ration
across NIH centers and the sharing of responsibilities for infrastructure
development, conceptual frameworks, and pilot studies

Applications of Principles of Community Engagement: Interventions devel-

oped 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 com-munity 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 tri-als (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

69
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://haafii org/HAAF_s_History html

70
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 com-munity
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 stake-
holders, and focus groups from four populations identified by the Suquamish
Cultural Cooperative (SCC) and the researchers: Elders, youth, service provid-
ers, 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 identi-fied 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

71
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 north-west
International Journal of Mental Health and Addiction 2010;8(2):362-373

Websites

http://adai washington edu/canoe/history htm

www wcsap org/Events/PDF/CR%20Handbook%20SS pdf

72
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 U S , 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 (com-munity
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 stig-matized 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 eth-

nographic project to create a dialogue between the health care Currently, promotores visit each
workers and the community of farmworkers Currently, promotores
family once or twice a year to
visit each family once or twice a year to conduct interviews and
collect data on biomarkers of diabetes A series of educational conduct interviews and collect
modules is being presented at each home visit throughout the five-
year study These modules are based on the questions that the data on biomarkers of diabetes.
participants had during the previous round of visits from the

73
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 fam-
ily’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

www isu edu/~carteliz/publications htm

74
7.IMPROVING AMERICAN INDIAN CANCER
SURVEILLANCE AND DATA REPORTING IN WISCONSIN

Background: In 2002, Spirit of EAGLES, a Special Populations Network pro-

gram funded by the National Cancer Institute to address comprehensive cancer
control through partnerships with American Indian communities, and its part-ners
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 coor-dination 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

75
 clinic Presentations were made to health boards or tribal government com-mittees
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 data-base
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
This project demonstrates approach developed reflected the time, availability, and skills of all
partners; it was acceptable to all those involved and not unduly
the successful application of
burdensome to any one individual or group The project’s success is
CBPR in a complex, multisite measured not only in terms of improving the accuracy of cancer data
for American Indians in Wisconsin but also by the ongoing, deeper
project with multiple partners.
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

76
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

www cancer wisc edu/uwccc/outreach asp

http://mayoresearch mayo edu/cancercenter/spirit_of_eagles cfm

77
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 well-ness
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 child-hood
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 child-hood 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 prin-cipals, 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

78
access to resources for healthy eating, and in Sunnyside the participants indi-
cated 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

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.

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 0 4
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

79
Applications of Principles of Community Engagement: More than 70 orga-
nizations participated in the development of the CAN DO Houston pilot program,
establishing a broad collaboration of community members, institu-tions,
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 liv-ing, 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://ccts uth tmc edu/ccts-services/can-do-houston

80
9. THE DENTAL PRACTICE-BASED RESEARCH NETWORK

Background: Practice-based research networks (PBRNs) are consortia of

practices committed to improving clinical practice Operating internation-ally
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 collabora-tions
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 part-
nering 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

81
Applications of Principles of Community Engagement: The DPBRN exempli-
fies 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

82
10. DIABETES EDUCATION & PREVENTION WITH A LIFESTYLE
INTERVENTION OFFERED AT THE YMCA (DEPLOY) PILOT STUDY

Background: With its exceptional reach into diverse U S 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 Among 92 participants after six
decreased by 6 0% in intervention participants and 2 0% in con-trols months, body weight decreased
Intervention participants also had greater changes in total cholesterol
These significant differences were sustained after 12 months, and by 6.0% in intervention
adjustment for differences in race and sex did not alter the findings
participants and 2.0% in controls.

Comments: With more than 2,500 facilities nationwide, the YMCA is a promis-
ing channel for wide-scale dissemination of a low-cost model for preventing
diabetes by changing lifestyles

83
Applications of Principles of Community Engagement: Bringing health
promotion activities to members of the community often requires mobiliz-ing 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 dissemi-nation 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

84
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 community-based 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 (gly-
cosylated 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 par-ticipate 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 expe-rienced educator

The instructors use a detailed curriculum in teaching the weekly sessions in the
patients’ native language The classes are collaborative, including inter-active
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

85
 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.

clinics over the same time period Participants’ belief that per-sonal
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 communi-ties 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 under-served
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 transforma-
tion of patients into peer educators, Project Dulce mobilizes the community’s
existing assets and incorporates Principle 7, which stresses capacity build-ing for
achieving community health goals Creating a peer education group coupled with
a bilingual/bicultural nursing team illustrates the true partner-ship 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

86
References

Gilmer TP, Philis-Tsimikas A, Walker C Outcomes of Project Dulce: a cul-

turally 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://www scripps org/services/diabetes/project-dulce

87
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 erup-tion 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

88
milestones in child development, children’s oral health needs, and specific skills
to engage the child’s cooperation The most common barriers to brush-ing, 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 empha-

sizes 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 cen-ters,
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 capaci-ties required to
make these efforts successful The next chapter addresses the organizational
supports necessary for effective community engagement

89
Managing Organizational Support
for Community Engagement
Chapter 4
Managing Organizational Support
for Community Engagement

Michael Hatcher, DrPH, David Warner, MD, Mark Hornbrook, MD

INTRODUCTION
A great deal has been researched and written on collaborative processes that
support community engagement, but the literature does not offer a system-atic
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 conven-ing 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 engage-
ment (Chapter 2), (2) community coalition action theory (CCAT; Butterfoss et

93
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 them-selves 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 engage-ment 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

94
engagement is not limited to coalition processes. Even so, CCAT and com-
munity engagement have a common focus on long-term relationships, and CCAT
offers propositions that are clearly relevant for undertaking and sus-taining
collaborative processes for community engagement. Additionally, CCAT
addresses the full range of processes from initiation of new collabora-tive
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 col-leagues (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.

95
• Information resources span data and scientific knowledge, including
demo-graphic 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; coordinat-ing
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
accu-mulated 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.

96
 If understanding is not

developed collectively, it is often

difficult to move to a collective

decision or action.

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, deci-sion
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 community-engaged 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, percep-tions 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

97
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 mobiliza-tion
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, engage-ment

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 com-munity’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 situ-
ation, 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

98
each capacity component for this practice element are presented in Table 4.2,
which demonstrates that the structural capacity needs for this practice ele-
ment 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 organi-zational

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 constitu-ent 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 collabora-tive 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

commu-nication 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

99
…the engagement process

must be honest, and

expectations must be clear.

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; deter-mining
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 obtain-ing
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, man-
agement 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 practice-based
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.

100
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 per-

formance 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.

101
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 con-
stituencies. 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 engage-ment
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 consis-
tently identified in these tables as number 3 despite its location in the tables.)

The far-right column describes the structural capacity needed; these require-
ments are derived by considering the five elements of capacity set forth by
Handler et al. (2001) in light of the CCAT propositions and engagement prin-
ciples identified as relevant to each practice element.

102
Table 4.1. Know the Community, Its Constituents, and Its Capabilities1

Community Coalition Action Theory Principles of Community Structural Capacity Needed

Engagement

Propositions: Principles: People Skilled in:

3. All stages of coalition development are 2. Know the community, including • Outreach, relationship building, data collection and analysis, and
heavily influenced by community context. its economics, demographics, information development and presentation.
4. Coalitions form in response to an oppor- norms, history, experience • Technical assistance and assessment of training needs for orga-
with engagement efforts, and
tunity, threat, or mandate. perception of those initiating nizational formation, planning and implementation of initiatives,
5. Coalitions are more likely to form when the engagement activities. communication and networking, and other engagement processes.
• Situational analysis and identifying opportunities for reciprocity within
the convening group provides technical/ 6. Recognize and respect the
material/networking assistance and various cultures of a community the community.
credibility. and other factors that indicate Information/Data on:
its diversity in all aspects of
6. Coalition formation is more likely when designing and implement- • Community demographics.
there is participation from community ing community engagement • Socioeconomic status.
gatekeepers. approaches.
7. Coalition formation usually begins by 7. Sustainability results from • Cultural beliefs, attitudes, and behaviors regarding health and other
recruiting a core group of people com- identifying and mobilizing contextual aspects of community life.
mitted to resolving the issue. community assets and from • Community civic, faith, business, philanthropic, governmental, and
8. More effective coalitions result when developing capacities and other special interest entities — their missions/purpose, assets, and
the core group expands to include par- resources. opinion leaders.
ticipants who represent diverse interest 9. Community collabora- • Physical attributes of the community.
groups. tion requires long-term
15. Satisfied and committed members will commitment. Organizational Structures to:
participate more fully in the work of the • Organizational mission or values statement that supports a culture of
coalition. long-term engagement with community partners.
16. Synergistic pooling of resources pro- • Recognition and reward systems for personnel who effectively per-
motes effective assessment, planning, form duties of community information development.
and implementation. • Information systems to manage collection, storage, analysis, and
17. Comprehensive assessment and plan- reporting of data on the capabilities of community partners; technical
ning aid successful implementation of assistance and training needs for partners to undertake the formation
of engagements, planning of initiatives, and implementation; develop-
effective strategies.
ment 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.

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.

103
Table 4.2. Establish Positions and Strategies to Guide Interactions2

Community Coalition Action Theory Principles of Community Structural Capacity Needed

Engagement

Propositions: Principles: People Skilled in:

4. Coalitions form in response to an oppor- 1. Be clear about the population/ • Information and policy analysis, strategic planning and strategy
tunity, threat, or mandate. communities to be engaged development, and initiative planning and implementation.
7. Coalition formation usually begins by and the goals of the effort. • Collaborative methods to work with diverse populations and build
recruiting a core group of people com- 4. Remember that community community capacity to analyze and apply information in decision
mitted to resolving the issue. self-determination is the making.
9. Open, frequent communication creates a responsibility and right of • Affiliation and network linkage development, organizational formation,
all people who comprise a
positive climate for collaborative synergy. community. collaborative leadership, facilitation, and participatory governance.
10. Shared and formalized decision-making 6. Recognize and respect the • Resource identification and leveraged resource management.
helps make collaborative synergy more various cultures of a community • Communications development and delivery.
likely through member engagement and and other factors that indicate
pooling of resources. its diversity in all aspects of Information/Data on:
12. Strong leadership improves coalition designing and implement- • Populations potentially affected by positions under consideration and
ing community engagement
functioning and makes collaborative influencing factors of socioeconomic, cultural, and other situational/
approaches.
synergy more likely. contextual data.
13. Paid staff with interpersonal and 8. Be prepared to release control • Population response anticipated based on beliefs, attitudes, past
to the community, and be
organizational skills can facilitate the flexible enough to meet behaviors, and readiness to act and participate.
collaborative process. the changing needs of the • Opportunities to engage opinion leaders in position and strategy
14. Formalized rules, roles, structures, and community. determination.
procedures make collaborative synergy 9. Community collabora- • Symbols, physical location, institutions, and events likely to improve
more likely. tion requires long-term engagement.
16. Synergistic pooling of resources pro- commitment. Organizational Structures to:
motes effective assessment, planning,
and implementation. • Establish information systems to obtain formative information on
issues for which community engagement is needed.
17. Comprehensive assessment and plan- • Analyze the range of solutions or actions, unintended consequences,
ning aid successful implementation of
effective strategies. and the opportunities to successfully address the issue(s) where com-
munity engagement is intended.
18. Coalitions that direct interventions at • Project resource needs and potential ways to attract, leverage, and
multiple levels are more likely to create
change in community policies, practices, manage resources.
and environments. • 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.

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.

104
Table 4.3. Build and Sustain Networks to Maintain Relationships, Communications, and Leveraging of Resources 3

Community Coalition Action Theory Principles of Community Structural Capacity Needed

Engagement

Propositions: Principles: People Skilled in:

5. Coalitions are more likely to form when 3. To create community mobiliza- • Network analysis and affiliation processes, engagement processes
the convening group provides technical/ tion process, build trust and that respect diverse populations and viewpoints, collaborative leader-
material/networking assistance and relationships and get commit- ship, network formation and ethical management of asymmetrical
credibility. ments from formal and informal power relationships, resource identification and leveraged resource
6. Coalition formation is more likely when leadership. management, and communications development and delivery.
7. Sustainability results from Information/Data on:
there is participation from community
gatekeepers. identifying and mobilizing • Network demographics and socioeconomic status.
7. Coalition formation usually begins by community assets and from • Network cultural beliefs, attitudes, and behaviors regarding health
developing capacities and
recruiting a core group of people com- resources. and other aspects of community life.
mitted to resolving the issue. 9. Community collabora- • Network structures and opinion leaders within these structures.
8. More effective coalitions result when
tion requires long-term • Network “boundary-spanners” who provide linkage across population
the core group expands to include par- commitment.
ticipants who represent diverse interest and system segments of the community.
groups. Organizational Structures to:
9. Open, frequent communication creates a • Recognize and reward personnel who effectively perform community
positive climate for collaborative synergy. engagement network duties.
12. Strong leadership improves coalition • Identify and understand the patterns of communication, influence,
functioning and makes collaborative and
synergy more likely. resource flow.
13. Paid staff with interpersonal and • Establish information systems to manage and maintain trusted two-
organizational skills can facilitate the way network communication.
collaborative process. • Encourage personnel to affiliate with formal and informal organiza-
15. Satisfied and committed members will tions and groups across the community and leverage those affiliation
participate more fully in the work of the points to support the organization’s network structures (communica-
coalition. tion, power/influence, and resource flow).
16. Synergistic pooling of resources pro- • Establish information systems to support network formation and affili -
motes effective assessment, planning, ation processes, network planning and implementation, and network
and implementation. resource identification and leveraged management.
17. Comprehensive assessment and plan- • Oversee communications and policy-related activities needed to lever-
ning aid successful implementation of age resources within the network structure.
effective strategies. • 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.

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.

105
Table 4.4. Mobilize Communities and Constituencies for Decision Making and Social Action4

Community Coalition Principles of

Community Structural Capacity Needed
Action Theory
Engagement
Propositions: Principles: People Skilled in:
6. Coalition formation is more likely when 4. Remember and accept that • Mobilization and engagement processes, execution of mobiliza-
there is participation from community community self-determination tion strategies, initiative planning and implementation, collaborative
gatekeepers. is the responsibility and right organizational formation and participatory governance, listening,
7. Coalition formation usually begins by of all people who comprise a appreciating diverse populations and viewpoints, collaborative leader-
community. No external entity ship to ethically manage asymmetric power relationships, resource
recruiting a core group of people com- should assume it could bestow identification, and leveraged resource management, and communica-
mitted to resolving the issue. to a community the power to tions development and delivery.
10. Shared and formalized decision-making act in its own self-interest. • Technical assistance and training to build partner capacity to partici-
helps make collaborative synergy more 5. Partnering with the community pate in community actions.
likely through member engagement and is necessary to create change Information/Data on:
pooling of resources. and improve health.
11. Conflict management helps create a • Emerging or new competitive viewpoints and cultural beliefs,
6. Recognize and respect the attitudes, and behaviors regarding health and other aspects of com-
positive organizational climate, ensures various cultures of a community munity life.
that benefits outweigh costs, and and other factors that indicate • Shifts in community structures and opinions of leaders within these
achieves pooling of resources and its diversity in all aspects of
member engagement. designing and implement- structures.
12. Strong leadership improves coalition ing community engagement • Impacts of engagement and mobilization efforts
approaches.
functioning and makes collaborative
Organizational Structures to:
synergy more likely. 7. Sustainability results from
identifying and mobilizing • Collectively govern the collaborative process and communicate
13. Paid staff with interpersonal and community assets and from effectively with community partners.
organizational skills can facilitate the developing capacities and
collaborative process. • Establish information systems to manage and maintain trusted two-
resources.
way network communication.
14. Formalized rules, roles, structures, and
8. Be prepared to release control • Establish information systems to support affiliations and mobilization
procedures make collaborative synergy
more likely. to the community, and be process of engagement initiatives, contingency planning to adapt
flexible enough to meet implementation of collaborative interventions, and feedback on use
15. Satisfied and committed members will the changing needs of the and management of network resources.
participate more fully in the work of the community.
coalition. 9. Community collabora- • Deliver technical assistance and training.
16. Synergistic pooling of resources pro- tion requires long-term • Establish information systems to provide feedback loops to evaluate
motes effective assessment, planning, commitment. impacts of engagement and intervention mobilization efforts.
and implementation. • Track personnel affiliated with formal and informal organizations and
17. Comprehensive assessment and plan- groups across the community.
ning aid successful implementation of • Leverage affiliation points to support the organization’s network and
effective strategies.
mobilization activities (communication, power/influence, resource
18. Coalitions that direct interventions at flow, and collaborative interventions).
multiple levels are more likely to create • Oversee communications and policy-related activities network and
change in community policies, practices,
and environments. mobilization activities.
• Manage resource exchange needed to accomplish coordinated com-
munity 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.

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.

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Challenges in Improving Community
Engagement in Research
Chapter 5
Challenges in Improving Community
Engagement in Research

Jo Anne Grunbaum, EdD

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 commu-nity
engagement efforts These challenges and some approaches for meeting them are
illustrated with a series of vignettes that describe real-life experi-ences 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 pub-lic 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

109
recommended public health practices For more information on the PRC pro-
gram, visit www cdc gov/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 U S 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 www CTSAweb org

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 pro-vide 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

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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 U S , 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 main-taining the
relationship over time The take-home messages offered at the end of each
vignette are grounded in the principles of community engage-ment, 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 ques-tion 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

111
 This inclusive approach
ensured participation from a
broad array of community

members from the beginning

of the study.

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 com-munities by
inviting key partners to participate For example, local grocery stores, health care
providers, families, Head Start teachers, teaching assis-tants, 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 (e g , 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, equip-
ment, 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 turn-over, 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

112
• 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 num-ber 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 research-ers 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

113
 These challenges do not compare, however, with those created by the histori-cal
exploitation of residents in some of these communities In the Southwest, where
research has too often been conducted in an exploitative manner with-out 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 com-munity 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
Together, the partners They used a variety of participation strategies to achieve trust For
established and maintained the example, local customs and cultural constructs were considered in
formulating the intervention, local advisory councils were formed,
bidirectional trust necessary elders were included as advisors, local community members were

to develop and implement a hired, formative assessment was conducted to determine the feasibil-
ity and acceptability of the proposed prevention strategies in local
successful intervention. 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 under-
represented 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

114
• 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 com-

munities 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 for-mula 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

115
 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 researchers found that lack the research institute staff began to attend community and farming
events, getting to know residents and families and learning what the
of familiarity with the author’s community’s important issues were Research institute staff asked
research institute and the people about these issues and attended events or supported efforts in the
farming communities that were not necessarily related to health
involved might be one barrier promotion but were key to the farm families in the granges Several
to full participation of the rural farm family members became part of the project’s community
advisory board, giving both advice and direction to the new plans
residents and grange members. 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
Armstrong-Brown, MPH

116
Challenge

The John Avery Boys and Girls Club (JABGC), located in the heart of a low-to-
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 fund-
ing 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 priori-ties 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 accom-plished 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

117
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

indepen-dently 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,

partner-ships 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 low-

income 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

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2.OVERCOMING 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 addi-tion, 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 com-munities 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 under-served

communities, such as American Indians, who have historically been exploited
For this reason, CBPR approaches served as the framework for

119
 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
The researchers and the of tribal leaders, parents, teachers, school personnel, and clergy
The researchers and the community board developed a document
community board developed a of shared values to guide the research process Community input
document of shared values to regarding the nature of the program was obtained from focus
groups, interviews, surveys, and informal discussions, including
guide the research process. 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 specifi-cally 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 pro-gram’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 U S
for information about the program The initial partnership was sup-ported 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

120
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 initia-tive 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

121
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 No 03-5375 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 secu-rity In
contrast, the backgrounds of the community partners ranged from two years of
college to nearing completion of a Ph D , 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 (e g , data-driven

dialogue and consensus about the final topic selected), the community-university
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 (e g , design, contents of the intervention,
recruitment strategy, and comparison community) were discussed mostly through
conference calls

122
Action Steps

The university partners began writing, collating what others wrote, and initi-ating
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 net-works 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 set-tings (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 univer-sity 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 part-ners’ 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 prob-lems
that have taken time to address and to heal

123
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

124
 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 hier-

archies 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 middle-class 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 inter-actions 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 Approaches to engage the
focused on community participation The AAHIP research team community can be used as
consists of African American and white researchers from Duke
University with terminal degrees and research experience and health
bridge builders when
professionals/community advocates from the Community Health working with economically
Coalition, Inc, a local nonprofit The community advisory board (CAB)
divided groups.
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

125
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, dissimilari-ties 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 (i e , the CAB plus the research
team) The research team assumed a leadership role in making recommendations
Notably, even within the CAB, differ-ences 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 lead-ers 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 univer-sity

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, sub-committees were
established to address important business These made active participation easier
because of the size of the group

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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 out-come 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://pewsocialtrends org/files/2010/10/ Race-2007 pdf

127
3. WORKING WITH NONTRADITIONAL COMMUNITIES

As described in Chapter 1, communities vary greatly in their composition New

communication technologies mean that increasingly there are commu-nities 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 follow-ing 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 U
S 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 com-

munication and used that method for regular scheduled contacts The methods
were mostly electronic (telephone, email, or fax) Every scheduled contact

128
 The face-to-face interaction

allowed by these visits was

meaningful to the PI and the

partners.

brought a communication from the contact person in the community, no matter

how insignificant The community partners contributed to the com-munication,
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 dura-tion of the six-year project

The PI knew that relying on electronic communication alone was not suf-ficient
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 (e g , 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

129
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 U S 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 collab-orative 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 high-est
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 specifi-cally 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

130
and research leadership Partners also committed to ongoing Partners also committed to
collaborations through frequent conference calls, the sharing of ongoing collaborations through
resources, and using research to improve tobacco control policy and
practice In addition, a statewide focus for the PRC was reiterated In frequent conference calls, the
2001, the PRC formed and funded a statewide Community
sharing of resources, and using
Partnership Board to ensure adequate representation and voice from
across the state This board provided input into the PRC’s tobacco research to improve tobacco
research agenda Partners collectively framed pilot research on
control policy and practice.
tobacco and the original core research project, the development and
evaluation of the N-O-T teen smoking ces-sation 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

131
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 policy-makers
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.

132
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

133
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, business-people,
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 assess-ment
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 pre-venting 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

134
Action Steps

Morehouse continued to work with Joyland, Highpoint, and the surround-ing

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 com-munity 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

135
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) com-
munity 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 opera-tions 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 appre-hension 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 com-munities 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 com-munities 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 metropoli-tan Atlanta community members and researchers to increase
awareness

136
 For more than a decade, critical

research has been implemented

and communities have sustained

change.

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 blue-print
for the governing body As much as possible, board members should be people
who truly represent the community and its priorities Agency staff (e g , 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 infrastruc-ture 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 communica-

tion and feedback, beyond formal monthly or quarterly meetings, to keep
members engaged

137
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

brand-new 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 community-based
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

138
Action Steps

The CHC was brought into the development of the grant proposal at the begin-
ning, 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

139
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

his-tory 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 participa-
tion on a research team

• Communicate and invest in capacity building. The operating procedures

and needs of academic institutions, federal agencies, and small community-based

140
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

141
5.OVERCOMING 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 assump-tions 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 inves-tigators; after an
informal discussion, CBO members gave the university

142
members a letter requesting specific items in return for their participation A
formal response to the letter was not provided by the university part-ner; 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 com-munity 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 collabora-
tion 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
consid-ered resolved by everyone involved

• Transparency is always essential for all entities.

143
 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
Academic research institutions priorities (Butterfoss, 2007), tools for assessing the “fit” between
and community organizations partnering organizations are scarce This vignette describes the
challenges faced by a CBPR partnership during the preparation and
often partner on research projects
implementation of a joint grant proposal
even though they may differ
significantly in key ways…

In October 2007, NIH announced the NIH Partners in Research

Program Each application was required to represent a partner-ship
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
144
 A second challenge arose that

highlighted the difference in

expectations between university

and community partners.

30% community/70% university split of direct costs In addition, every dol-lar 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 com-
munity workers facilitate discussion groups To accomplish this, the
community portion of the budget had to pay to train commu-nity
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 pro-
cedures 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

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Take-Home Messages

• “Splitting budgets in half” is too blunt a tool for the delicate work of
build-ing 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 com-
petitive differences and work together for the good of their mutual communities

146
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 con-
sultants 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 part-ners 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 (e g , 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

147
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 partici-pants 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

mis-sion 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

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The Value of Social Networking
in Community Engagement
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

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 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 relation-ships, 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 (e g , 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,
Social networks can be a key 2011) Social networks may also have negative effects on health,
however (Arthur, 2002; Cattell, 2001) Christakis et al (2007),
factor in determining how healthy for example, found “clusters” of obesity within a network of
a community is. 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 educa-tion
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 interven-tion (Erwin et al , 2007)

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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 net-works, 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 com-munity
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 know-ing 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

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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 represent-ing
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 com-munity

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 knowl-edge about social
networks and gathering knowledge from such networks are essential to the
development of relevant strategies for health improve-ment 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 com-
munication 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

154
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 mobi-lizing 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)

155
In addition, social media can generate a discussion archive that is useful for
revisiting opinions, information, and collective history Furthermore, the man-ner
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 par-

ticipants 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 com-munity
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 com-munity
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 supple-mentary or complementary, particularly in the
early stages of community

156
 Given the resources necessary to

involve social media, it would be a

mistake to try to be “everywhere.”

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 engage-ment 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 engage-ment ”
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 itera-tive 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

157
health, and the growing use of community-engaged health promotion and
research has brought to the fore the potential for social networks to sup-port
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 net-works just as they should be to all
engagement efforts

158
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: Jossey-
Bass; 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

159
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

160
Program Evaluation and Evaluating
Community Engagement
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 commu-nity
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 rel-evant to

community engagement programs, including definitions, categories, approaches,
and issues to anticipate The chapter is not intended as a com-prehensive
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

163
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 (i e , 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 participa-tion 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

164
 Evaluation can be classified

into five types by intended use:

formative, process, summative,

outcome, and impact.

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 informa-
tion 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 implementa-tion of
a program Summative evaluation informs judgments about whether
the program worked (i e , 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 (i e ,
“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 ces-sation

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 partici-pate Reduction in
morbidity and mortality associated with cardiovascular disease may represent an
impact goal for a smoking cessation program (Rossi et al , 2004)

165
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, activi-
ties, 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
stan-dards 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, util-ity,
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

166
in or affected by the program evaluation In addition to the rights of human
subjects that are the concern of institutional review boards, propriety stan-dards
promote a service orientation (i e , designing evaluations to address and serve the
needs of the program’s targeted participants), fairness in iden-tifying 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 cred-ible
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 meth-ods
Meeting accuracy standards might, for example, include using mixed methods (e
g , 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

167
 Defining and identifying

stakeholders is a significant

component of the planning stage.

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 pro-gram? 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 researcher-community 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 stake-
holders 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, community-based
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 commis-sions, 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

168
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 stakehold-ers 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, main-taining 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 cor-rections 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 immedi-ate

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

169
 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 (e g , participating in a pro-gram 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.

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 evalu-ation 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

170
presentations may be difficult for community members who have other com-
mitments (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 assess-ment
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 empow-
erment 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 nec-essary
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

171
 • 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
The major goal of empowerment management of the program (Fetterman, 2008) The major goal
of empowerment evaluation is to transfer evaluation activities
evaluation is to transfer evaluation from an external evaluator to the stakeholders Empowerment
activities from an external evaluation has four steps: (1) taking stock of the program and
determining where it stands, including its strengths and weak-
evaluator to the stakeholders. nesses; (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):

172
• 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,

opportuni-ties, obligations, and bargaining power

• Use of community knowledge to understand the local context and to

inter-pret 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 tech-
nical 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)

173
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? How are participants experiencing the change?
What are the changes in performance? How does the program change the way individuals relate to or feel
How many/what resources are used during implementation? about each other?
To what extent is the intervention culturally and contextually valid?

Outcome Is there a change in quality of life? How has the culture changed?
Is there a change in biological and health measures? What themes underscore the participant’s experience?
Is there a difference between those who were involved in the What metaphors describe the change?
intervention and those who were not? 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 7 1 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

174
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 (e g , 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 evalu-ation 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 mean-ings
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

175
 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 (e g ,
were clients of the program being evaluated) Focus group participants
discuss their ideas and insights in response to open-ended ques-tions
The evaluation of from the facilitator The strength of this method is that group
discussion can provide ideas and stimulate memories with topics
community engagement may
cascading as discussion occurs (Krueger et al , 2000; Morgan, 1997)
need both qualitative and
quantitative methods because
of the diversity of issues
addressed

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 collec-tion, 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 (e g ,
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
176
Questions to ask when evaluating community engagement include the fol-lowing
(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

inter-vention? 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
aca-demics? 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 com-munity
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

177
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 plan-ning and implementing organizational structures to
facilitate community engagement initiatives as discussed in Chapter 4

CHALLENGES

Engaging the community in developing and implementing a program evalu-ation

can improve the quality and sustainability of the program However, several
challenges must be overcome to ensure an appropriate and effec-tive 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 organiza-tional 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 uncomfort-
able, addressing those issues can contribute to the program’s improvement
Finally, an appropriate evaluation design and methodology should be used

178
CONCLUSION

Program evaluation can take a variety of forms and serve a variety of pur-poses,
ranging from helping to shape a program to learning lessons from its
implementation or outcomes Engaging stakeholders throughout the evalu-ation
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 community-engaged partnerships in and of
themselves is an emerging area In addition, SNA and formal models of
engagement may provide useful frameworks for evaluating engagement

179
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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://www cdc gov/prc/pdf/ esfall2009-full
pdf

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://www rri pdx edu/fetterman_empowerment_ 10-2008 pdf

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 evalu-

ation and measuring results. Social Development Direct; 2009 Retrieved from
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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 recommen-
dations 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: combin-ing

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
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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://www med umich edu/meded/
pdf/Newsletters/12-2009 pdf

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 participa-tory
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

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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, et al

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Summary
Chapter 8
Summary
Donna Jo McCloskey, RN, PhD, and Mina Silberberg, PhD

This primer presents the case for community engagement in health promo-tion
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

185
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 impor-tant? 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

accom-plish? 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

commu-nity on specific programs or issues? How? Are there existing
collaborations with other institutions or agencies? Are community leaders or
representa-tives 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 com-munity
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 geo-

graphic community, including all of those who live within its boundaries, or is
it a community that is defined in some other way?

186
• Know the extent to which the focus of the community engagement
efforts is flexible As more is learned about the community and issues of inter-
est, 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 proj-ects,
if they understand what it means to become involved and believe their
participation will be meaningful Using a community-engaged All interested individuals, groups,
approach and working within communities requires a continual
effort to balance costs and benefits and sustain cooperation and and organizations must feel they
accountability among participating groups All interested individuals, can join a community engagement
groups, and organizations must feel they can join a community
effort and influence it.
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, relation-ships
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 gover-nance 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

187
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 sci-ence 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

188
Appendix A:
Acronyms
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 Children 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

191
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

192
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

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NIH Publication No. 11-7782