Introduction to Community-Engaged Research
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Welcome to the University of Kansas Medical Center’s Introduction to CommunityEngaged Research. This training provides a brief overview of the concepts of community
engagement for investigators interested in collaborating with community partners on
research projects. All researchers who indicate a community component to their projects
on the Regulatory Knowledge and Support survey must complete this course.
Introduction: What, Why and Who
What is Community Engagement?
CDC defines community engagement 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.”
Community-engaged health promotion, policymaking,
and research are based on the social ecological model
of health which conceives of health as the interaction
between the individual, the community, and the
physical, social, and political environments. Behavior,
lifestyle, and incidence of disease are imbedded in the
context of the community.
Successful interventions aimed at improving population
and individual health begin with critical knowledge of
the community. The best way to obtain this knowledge
is by engaging community partners who bring their own
perspectives and experiences to a project.
What is a Community?
“Community” is not just a geographic term synonymous with places such as a city or a
neighborhood. Instead, a community is any group of people linked by social ties who share
interests or other common characteristics. These groups may or may not share geographic
boundaries.
Despite being held together by common characteristics, communities are internally diverse.
They seldom speak with a single voice. Researchers beginning community work will need to
select the initial partners – individuals and community organizations – with which they will
work as representatives of the larger community. These initial contacts can be expanded or
changed over time to provide a wider picture of the community.
A Continuum of Engagement Possibilities
OUTREACH
Provide
information
and
services
COLLABORATE
Form partnerINVOLVE
ships with the
Invite
community on
community
each aspect of
participation on a project from
CONSULT
specific issues
Get
development
information or
to completion
feedback from
the community
SHARED
LEADERSHIP
Form strong
partnership
structures
among
participating
entities
(Source: Clinical and Translational Sciences Awards Consortium Community Engagement
Key Functions Committee Task Force on the Principles of Community Engagement, 2011.)
A Continuum of Research Possibilities
Degree of Community Involvement
Not all community engagement activities are related to research. Many activities – especially
in the initial stages of community engagement – involve trust building, listening, learning, and
capacity building. Once the decision has been made to engage the community in research a
range of relationships exist:
More
Intensive
Collaborate fully in all aspects of research: e.g., defining
study questions, designing methods, implementation,
analyzing findings, and disseminating results .
Medium
Assist with implementation of a researcher-designed
study: e.g., participant recruitment, data collection,
consulting on aspects of study design or data
interpretation. Community partners often serve as
sub-contractors.
Less
Intensive
Assist in performing discrete steps in a researcher
designed study such as recruiting participants.
(Source: Community-Engaged Research : A Quick Start Guide ,for Researchers.
University of California at san Francisco, 2010)
Community-Engaged Research
 Community-engaged research is not a research
methodology but is a specific approach for
conducting research.
 Community engagement is defined by a set of
principles that guide research and relationships
with the community. This includes respectful
access to cultures and communities, community
participation and empowerment, coalitionbuilding, and the ethical conduct of research.
 Community-engaged research requires
partnership development based on mutual
respect and a commitment to addressing local
health issues.
 Community engagement recognizes the
knowledge and skills of community organizations
and individuals and encourages people to expand
upon those skills.
Who are Potential Community Partners?
 Community members
•
Individuals or small groups of people who, for example,
share a common illness, health or social concern or have an
advocacy position on a issue
 Community-based organizations
•
Community-based organizations include, but are not limited
to, neighborhood associations, social and service clubs,
churches, advocacy organizations, schools, and local county,
and state governments.
 Community-based clinicians
•
Community-based clinicians include physicians, nurses,
dentists, pharmacists, and others. Community-based
clinicians may be included in research studies through
practice-based research networks.
Translational Research
With the launch of the Clinical and Translational Science Award (CTSA) program in
2006, the National Institutes of Health made translational research a key priority.
NIH’s emphasis on accelerating basic science discoveries and speeding translation
of those discoveries into clinical practice has given rise to three translational
blocks:
 T1 – Translation from animal studies to humans
 T2 – Translation from human clinical studies to patients
 T3 – Translation from patients to practice
Unfortunately, the translational path from bench to bedside to practice does not
currently occur quickly. One study estimates that it takes 17 years on average for
new scientific discoveries to enter day-to-day practice. By concentrating on T2
and T3 studies, community-engaged research provides the engine for accelerating
the acceptance and application of new knowledge.
All breakthrough, no follow through.
-- Steven H. Woolf (Washington Post, 2006)
The Use of Community Engagement in Translational Research
Translation of evidence-based medicine from bench to practice is not simply a
matter of perfecting communication to improve the uptake of the latest scientific
evidence. Phase 1 and 2 clinical trials attempt to limit variations in study
populations to maximize internal validity. These study populations are a good
deal more homogeneous than the public at large, and treatment effects are
frequently measured as study population means which may mask variation.
Clearly, all patients do not benefit equally from a new treatment.
Translational research attempts to determine whether evidence acquired from
studying homogeneous populations in controlled settings holds in the untidy,
heterogeneous world of day-to-day medical practice, and if not, why.
Many practice-based and community studies involve bidirectional interaction
between communities and academic researchers. Clinical practices and
communities members – especially minority populations who have experienced
disparities in treatments and outcomes – contribute clinical observations and
pose new questions that influence the next phase of study. These studies
produce different kinds of evidence that may be of value in diffusion and
adoption of evidence-based interventions.
2 Principles of Community Engagement
Before Starting a Community Engagement Effort:
•
Be clear about the purposes or goals of the
engagement effort and the populations and/or
communities you want to engage.
•
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.
Source: Clinical and Translational Sciences Awards Consortium Community Engagement Key Functions Committee
Task Force on the Principles of Community Engagement, 2011
For Engagement to Occur, it is Necessary to…
•
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.
•
Remember and accept that collective selfdetermination 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 selfinterest.
For Engagement to Succeed…
•
•
•
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.
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
actions.
•
Investigators who 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.
•
Community collaboration requires longterm commitment by the engaging
investigators and supporting institutions.
3 Challenges to Collaboration
Genuine community-engaged research does not come easily or without investment. Years
of neglect, distrust, poor communication, and lack of respect has resulted in reluctance in
some communities to participate in research activities. It takes time and effort to reach out
and meet a community on its own terms.
This section will discuss two of the major challenges to conducting community-engaged
research.
Engaging and maintaining
community involvement, and
Overcoming differences between
and among academics and
communities
Engaging and Maintaining Community Involvement
Community engagement begins with the researcher gaining entry into the community. Entry
into a community may be facilitated by a research colleague or a clinician who has worked in
and is knowledgeable about the community. This approach, however, merely opens the door;
each researcher must establish their own relationship with individuals and organizations within
the community. Shared interests among parties set the stage for future collaborations, and
mutual trust makes collaborations possible.
One strategy for engaging the community in a research project is to involve the community as
the ideas for research are being considered, and before questions and procedures are set. This
provides an opportunity to draw upon the strengths and assets of the community, and to
recognize its priorities in setting the research agenda. It is a trust-building experience, one that
reinforces the notion that the project is truly collaborative.
Challenges to Engaging and Maintaining Community Involvement
Community engagement must be maintained not only during a research project but also
between research projects. One way to enhance existing relationships and create long-term
partnerships is to establish a community advisory board or “CAB”. CABs play several roles in the
research process:
• They provide project-related community outreach and education
•
•
•
•
They offer input on research and project design
They assist in participant recruitment
They help researchers to resolve problems that arise during the project
They provide a visible and credible link between academia and the community
Community advisory boards should be composed of individuals representing various parts of the
community. Some of the members may belong to community organizations that actively
participate in research projects. Memorandums of understanding should be signed between
researchers and participating community organizations to enhance communication by spelling
out expectations, roles and responsibilities, and governance.
Overcoming differences between academics and the community
Despite the existence of common aims that unite academic and community partners,
differences in culture, language, education, socioeconomic backgrounds, and power can
provide substantial challenges to community engagement. Many of these differences
can be overcome by patient, respectful, humble, and flexible engagement on behalf of
researchers.
There is no substitute for spending time in the community. Initially it may be essential
for researchers to spend time in the community to agree on common goals that set the
foundation for further collaboration. Community visits should be scheduled as
frequently as possible.
It is important to recognize that community-engaged research is a process of mutual
capacity-building in which both sides learn from each other and power is shared. Each
side has something unique to offer.
4
Differences Between Traditional & Community-Engaged Research
Traditional
Research
Community-engaged Research
Defined by researcher
Defined in collaboration with
community partners
Human subject in community
Community members are seen as
participants or partners
Researcher controls all aspects of
the project
Researchers and communities work
together to improve instruments,
increase participation, and interpret
results.
Knowledge acquisition
Researcher obtains new
knowledge
Researchers and communities
collaboratively obtain new
knowledge and skills
Data and disseminations
Owned and controlled by
researcher
Data is shared; community and
researchers agree on dissemination
plans
Attribute
Topic/research question
Focus/unit of analysis
Study design and execution
(Adapted from: “Practicing Community-engaged Research,” MA McDonald, Duke Center for Community Research)
Recruitment and Retention of Minority Research Participants

To redress historic racial and ethnic disparities in health, growing attention has
focused on the inclusion of these previously under-represented populations in
clinical and health services research.

Fears of mistreatment, exploitation, surrendering of rights during the informed
consent process, or being treated as a “guinea pig” top the list of reasons why
minorities are reluctant to participate in research studies.

Community engagement is a common approach to building trust and lowering the
barriers to participation.

Through the routine engagement of communities, researchers can also prepare the
ground for future studies by explaining the research process and the ethics of
research, and describing the value of research to the community and individuals.
5 Working With Community-based Clinicians
Practice-based Research Networks (PBRN)
•
PBRNs are defined by the Agency for Healthcare Research and Quality as "a group of
ambulatory practices devoted principally to the primary care of patients. Typically,
PBRNs draw on the experience and insight of practicing clinicians to identify and frame
research questions whose answers can improve the practice of primary care.“
•
By linking these clinician-identified questions with rigorous research methods, the PBRN
can produce research findings that are immediately relevant to the clinician and, in
theory, more easily assimilated into everyday practice
•
PBRNs have been used in clinical research for over 30 years, but growth in the number
of networks has been most substantial during the last 20 years.
•
Kansas Providers Engaged in Prevention Research (KPEPR), a PBRN associated with
KUMC, is composed of approximately 40 primary care practices located in mostly rural
communities across the state.
Design and Methods
The willingness of community clinicians to participate in a research projects
can be greatly influenced by methodological issues. Two issues that may raise
concerns are the use of control groups and randomization. Some clinicians are
uncomfortable with the idea that some of their patients will receive a
potentially valuable intervention and others will be assigned to a nonintervention control group.
Bearing this issue in mind, it is useful to discuss the topic of methods with
clinicians early in the planning process and, if necessary, to select from among
the growing menu of ideas for modifying randomized designs.
6 Why should I participate in community-engaged
research?

Community engagement changes the choice/focus of projects and how
they are conducted and funded; new opportunities await!
 Community collaboration leads to improvements in study designs, tools,
interventions, participation, data collection, analysis, and dissemination
that is more apt to move research into practice.

Engaged research can lead to new or improved services being made
available, policy or funding changes, or transformation of professional
practices in all fields of health and medicine.
 Academic partners can obtain an enhanced understanding of health
issues under study by taking into account the full context of communities
(e.g., environment, culture and identity).
 Community partners can enhance their knowledge and skills, enabling
them to improve their capacity to solve local problems and creating the
framework for possible future collaborations with academic partners.
 Engagement with communities makes it easier for individuals – especially
racial and ethnic minorities – to participate and enrich the outcomes of
research.
6 Summary:
Should I participate in community-engaged research?
Questions to ask before initiating a community-based research project:
 Do you need to obtain additional skills or bring on co-investigators to carry
out community-engaged research??
 Are you a researcher who is uncomfortable with changing your methods to
work with participants?
 Does the burden to the community outweigh potential research benefits?
 Do you really accept the values and principles of community engaged
research?
(Source: CCPH CBPR Curriculum, 2006.)
Support and Resources
How the Community Partnership for Health Can Help You
Frontiers was created with numerous community affiliates and partners at KUMC as the
institute to carry forward the CTSA grant from NIH. The Community Partnership for Health
(CPH) is the organization formed as part of Frontiers to provide a community engagement
resource at KUMC.
CPH is ready to help you with your community-engaged research projects in a
number of ways:
1. Project planning and consultation on community-engaged research.
2. Match-making between community-based research teams and Frontiers
researchers.
3. Training and mentoring for inexperienced community-based researchers.
4. Introduction to community organization and institutional contacts.
5. Respectful access to potential community research participants.
6. Review of protocol by the Frontiers Community Council members.
CPH staff can be contacted at 913-588-1956, Monday-Friday 9:00 am – 4:00 pm.