Transcript Community-engaged Research Developed through the APTR Initiative to Enhance Prevention and Population Health Education in collaboration with the Brody School of Medicine.

Community-engaged Research
Developed through the APTR Initiative to Enhance Prevention and Population
Health Education in collaboration with the Brody School of Medicine at East
Carolina University with funding from the Centers for Disease Control and
Prevention
APTR wishes to acknowledge the following individuals who
developed this module:

Anh Tran, PhD, MPH
Duke University School of Medicine, Department of Community & Family Medicine
Duke Center for Community Research

Victoria S. Kaprielian, MD, FAAFP
Duke University School of Medicine , Department of Community & Family Medicine

Mary Anne McDonald, MA, DrPH
Duke University School of Medicine , Department of Community & Family Medicine
Duke Center for Community Research
This education module is made possible through the Centers for Disease Control and Prevention (CDC) and the
Association for Prevention Teaching and Research (APTR) Cooperative Agreement, No. 5U50CD300860. The module
represents the opinions of the author(s) and does not necessarily represent the views of the Centers for Disease
Control and Prevention or the Association for Prevention Teaching and Research.
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Identify the historical and philosophical basis of
community-engaged research (CEnR).
Describe the principles of CEnR.
List the differences between a traditional research
approach and a CEnR approach.
Discuss how research can benefit from
collaboration between researcher and community.
Explain how CEnR exists on a continuum.
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Framework/approach for conducting research
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Used with both qualitative and quantitative methods
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Recognizes and builds on community strengths
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Characterized by principles that guide research
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Requires partnership development
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Many different ways to conduct
medical/health research in communities, and
CEnR is one of them.
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Over the past few decades, community
engaged approach has been used more
widely in both domestic and international
health promotion and research programs.
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Empowerment education
 Equality and co-learning
 Community problem solving
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Different theories with valid views on what is being
observed
 Role and experience of the observer
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Differences between a traditional research approach
and a community-engaged approach
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Elements of community-based participatory research
(CBPR)
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How community-engaged research exists on a
continuum
(CDC/ATSDR Committee on Community Engagement, 1997)
Researchers
Communities
Common Language for Community
Engagement
What’s Said:
I’m recruiting
participants for a
study…..
What’s Heard:
What if my
employer
finds out….
Will this make
our
neighborhood
look bad?
They just
want to take
advantage of
me..
Maybe I can
gain new
information
about my
health…
Researchers
Communities
Communities
Being the subject of research is different
from being a participant in research
Traditional Research Process
Researchers identify research question or
respond to request for proposals
Develop research plan, select community
& secure funds
Develop & implement intervention
Collect data
Analyze data
Interpret data, write papers &
disseminate results
Traditional
Research
Approach
Community-engaged
Researcher
defines problem,
community
maythe
contribute
Research with
community
Researcher defines Research IN the community, or
WITH the community
problem
Research (CEnR)
Community-based
Participatory Research
Approach
Community identifies
problem or works with
researcher to identify
problem
Research WITH
community as full partner
Research IN or ON
the community
Research WITH community as
partner
People as subjects
People as participants
Community
organizations may
assist
Community organizations may
help recruit participants &
serve on Advisory Board
Researchers gain
skills & knowledge
Researchers gain skills &
Researchers & community
knowledge, some awareness of work together to help build
helping community develop
community capacity
skills
Researchers control research,
Researcher & community
community representatives
share control equally
may help make minor decisions
Researchers
control process,
resources & data
interpretation
Researchers own
data, control use &
dissemination
Researchers own the data &
decide how it will be used &
disseminated
People as participants &
collaborators
Community organizations
are partners with
researchers
Data is shared,
researchers and
community decide its use
and dissemination
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Understand community context/geography
Respect social customs
Respect cultural beliefs and behaviors
Recognize that people communicate differently
Be approachable
Observe community etiquette
Work towards becoming culturally competent
Is a collaborative approach to research
Involves all partners equitably in the research
process
 Recognizes unique strengths that each brings
 Finds a research topic important to the community
 Combines knowledge with action
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Ultimately, CBPR aims to improve health outcomes and
eliminate health disparities.
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Communities identify problems
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Communities develop solutions
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Shared decision making power
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Shared dissemination of data
Building a strong partnership takes
time, attention and reflection
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Researchers can develop questions about health
issues of concern to the community
 Results likely to be translatable
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Community partnerships can help participant
recruitment
 Community understanding can bring
community support
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Can improve the reliability and validity of:
 Measurement tools
 Questions and study procedures
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Can inform about community interpretations of
research results
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Epidemiological or descriptive studies
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Evidence-based practice
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Evaluation or practice-based evidence
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How does the researcher role differ in CEnR
compared to traditional research?
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How can projects include some principles of
community-engaged research (CEnR)?
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Problem identification
Community selected, research plan developed, and
funds secured
Begin study in community
Develop and implement intervention or data
Collection process
Collect data
Analyze data
Report and disseminate results
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Community members may approach researchers
OR
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Researchers may approach community
with a proposal for research
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Researchers may handle all these steps
OR
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Community organizations may contribute
 Research questions
 Ideas on recruitment
 Advice on logistics
 Suggest other collaborating organizations
 Advice on how to tailor for the
community context
Control groups
Different treatments or interventions provided to
groups
 Random assignment of participants
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© Duke Translational Medicine Institute
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Share drafts of the research proposal with
community partners OR co-author proposal with
them
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Include funding for the work of community partners
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Share information on the project budget
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Does not need to include explicitly ethical concerns
Can specify organizational and community level risks
and benefits
 Detail how
researchers and
community
organizations will
work together
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Establish how
decisions will
be made
© Duke Translational Medicine Institute
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Need IRB approval for project
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Need for community partners to be trained
on protection of human subjects
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Need for IRBs to be familiar with nature of
CEnR projects
 Organizations for members of ethnic or language
groups
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Native American
Tribal Organizations
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County Health
Departments
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School Boards
© Duke Translational Medicine Institute
Involve community members as:
 Project staff - in the office or in the field
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Advisors/Consultants
Involvement helps with:
 Recruitment and retention
 Community buy-in
Community partners can:
 Help tailor the intervention
 Help tailor the data collection process
 Advise on problems
 Promote the study in the community
 Collect community’s responses
Community members can be hired to:
 Administer questionnaires
 Log participation
 Read measurements
 Make observations
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Community staff can assist in activities such
as data cleaning
Community may want to use
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Meetings
Radio programs
Newspaper articles
Researchers need to discuss how and when to present
findings in the community
Community members and partner organizations should:
• Receive credit for their contributions
• Be included in press conferences
• Attend and present at meetings, if possible
• Be considered for inclusion as co-authors
in papers
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CEnR approach encompasses a range of possibilities
for research conducted with community partner
participation.
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CenR approach has potential to
yield more meaningful and
translatable findings.
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Department of Public Health
Brody School of Medicine at East Carolina University
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Center for Public Health Continuing Education
University at Albany School of Public Health
Mike Barry, CAE
Lorrie Basnight, MD
Nancy Bennett, MD, MS
Ruth Gaare Bernheim, JD, MPH
Amber Berrian, MPH
James Cawley, MPH, PA-C
Jack Dillenberg, DDS, MPH
Kristine Gebbie, RN, DrPH
Asim Jani, MD, MPH, FACP
Denise Koo, MD, MPH
Suzanne Lazorick, MD, MPH
Rika Maeshiro, MD, MPH
Dan Mareck, MD
Steve McCurdy, MD, MPH
Susan M. Meyer, PhD
Sallie Rixey, MD, MEd
Nawraz Shawir, MBBS
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Sharon Hull, MD, MPH
President
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Allison L. Lewis
Executive Director
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O. Kent Nordvig, MEd
Project Representative