The Role of Community
Engagement in Translational
Research
ITHS Bootcamp
September 21, 2012
Leo S. Morales, MD, PhD
Group Health Research Institute
Department of Health Services, UW
Co-Director, Community Outreach and Research Translation Core, ITHS
Translational Research Continuum
T1
Basic
Research
T2
Early phase
Clinical
Trials
Translating
discoveries into
treatments
(phase 1 and 2
clinical trials)
T3
Later phase
clinical
trials
Developing
treatment
guidelines (phase 3
clinical trials)
T4
Community
Practice
Disseminating
and
implementing
evidence-based
care in practices
Community
Disseminating
and
implementing
evidence-based
interventions in
communities
What is Community Engaged
Research?
Community-engaged research is a framework or
approach for conducting research that entails
involving users of the research and other
stakeholders in the formulation as well as the
application of the research. A wide range of
research methods—epidemiologic, experimental,
survey, focus-group, qualitative interview—can be
applied in the service of participatory research. The
choice depends on the methods called for by the
research questions and the feasibility of the
methods in the particular circumstances.
What is a Community?
A group of people with diverse
characteristics who are linked by social
ties, shared perspectives, and engage
in joint action in geographical locations
or settings.
Source: MacQueen KM, McLellan E, Metzger DS, Kegeles S,
Strauss RP, Scotti R, Blanchard L, Trotter RT. What Is
Community? An Evidence-Based Definition for Participatory
Public Health. American Journal of Public Health. 2001;
91(12): 1929-1938.
Contrasting Research Paradigms
Traditional Research
Community Engaged Research
Community Based Participatory
Research
Research
Objective
Investigators set the
research agenda
Investigators set the research agenda
with community input
Investigators and community set
research agenda
Study Design
Investigators design
study
Investigators design study with
community input
Investigators and community
design study together
Recruitment
Investigators determine
recruitment strategies
Investigators select recruitment
strategies with community input
Investigators and community
select recruitment strategies
Data Collection
Investigators select data
collection strategies.
Investigators select data collection
strategies with community input.
Community members assist with
some aspects of data collection.
Investigators and community
select data collection strategies.
Community members collect
data - focus on capacity building
Analysis/Interpret
ation
Investigators conduct
analyses and interpret
data
Investigators conduct analyses and
interpret data with community input
Investigators and community
conduct analyses and interpret
data.
Dissemination
Peer-reviewed
publications and
scientific meetings
Peer-reviewed publications, scientific
meetings and community
presentations
Community members involved
in all dissemination efforts
including peer-reviewed
publications.
Participation of Different Groups
in Translational Research
Patients,
Families,
Communities
Academic
Investigators
T1: Basic Research
T2, T3: Clinical Trials
T3, T4: Dissemination
and Implementation
Research
Health Systems
& Practices
Degree of Participation by
Stakeholders by Type of Research
Source: Green LW, Mercer SL. Can public health researchers and agencies reconcile the push from
funding bodies and the pull from communities? Am J Public Health. 2001 Dec;91(12):1926-9.
Principles of Community
Engagement
• Have a clear statement of the purpose or goals of
the engagement effort
• Define the community or population you wish to
engage
• Become knowledgeable about the community or
population you wish to engage
• Go to the community, establish relationships, build
trust, and seek commitments from community
organizations and leaders to move the engagement
process forward
• Approach community members with humility and
respect, recognizing the expertise and resources
they can bring to a research project
Adapted from: Principles of Community Engagement, 2nd Edition, June 2011
Principles of Community
Engagement
• Recognize that communities are diverse.
Awareness of various factors affecting diversity
must be considered when planning, designing
and implementing community engagement
• Seek to identify and mobilize community assets
and develop a community’s capacity to make
decisions and take action (build social capital)
• Be prepared to adapt your methods and
interventions to meet the needs of the
community
• Be prepared to make long-term commitments
to community partners
Adapted from: Principles of Community Engagement, 2nd Edition, June 2011
Community Engagement
Continuum
Barriers to Community
Participation in Research
• History of poor relationships with
academic researchers
– Topics of research not of interest
– Results of research not shared with
community
– Community members subjects of
experimentation
• Limited time and resources for research
• Limited experience proposing or
conducting research
• Lack of tangible benefits to community
Barriers to Academic Participation
in Community Engaged Research
• Insufficient time to build relationships with
community members and organizations
• Community engagement may not recognized or
rewarded by academic faculty
• NIH funding is not suited to ongoing community
engagement
– Long and uncertain application process
– Project-based funding
• Communities may not be willing to wait for
published articles to learn about the results of
research
ITHS CORT
(Community Outreach and Research Translation)
• Community Based Practice Research: UW
Department of Family Medicine (Laura Mae
Baldwin lmb@fammed.washington.edu)
• American Indian/Alaskan Native Community
Outreach: Partnership for Native Health (Dedra
Buchwald dedra@uw.edu)
• Hispanic Community Outreach: Group Health
Research Institute (Leo Morales
morales.l@ghc.org)
Resources for Learning More About
Community Engagement
•
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•
•
•
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•
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Principles of Community Engagement, 2nd Edition, Clinical and
Translational Science Awards Consortium
Viswanathan, M., Ammerman, A., Eng, E., et al., (eds).
(2004). Community-Based Participatory Research: Assessing the
Evidence. Rockville, MD: Agency for Healthcare Research and Quality.
Minkler, M. and Wallerstein, N. (eds). (2008). Community-Based
Participatory Research for Health: From Process to Outcomes (2nd
edition). San Francisco, CA: Jossey-Bass.
Research Toolkit (http://www.researchtoolkit.org/)
Israel, B., Eng, E., Schulz. A., et al., (eds). (2005). Methods in
community-based participatory research for health. San Francisco, CA:
Jossey-Bass.
Wallerstein N, Duran B Community-based participatory research
contributions to intervention research: the intersection of science and
practice to improve health equity American Journal of Public Health
2010;100(Suppl 1):S40-46
Seifer, S.D. and Calleson, D.C. (2004). Faculty perspectives on
community-based research in academic health centers: Implications for
policy and practice. Journal of Interprofessional Care. 18(4): 63-74.
Office of Behavioral and Social Sciences Research, NIH
(http://obssr.od.nih.gov/scientific_areas/methodology/community_bas
Levels of Participation of Different
Groups in Participatory Research
Source: Green LW, Mercer SL. Can public health researchers and agencies reconcile the push from funding
bodies and the pull from communities? Am J Public Health. 2001 Dec;91(12):1926-9.