The Community Engagement Studio:
Strengthening Research Capacity
through Community Engagement
Consuelo H. Wilkins, MD, MSCI
Executive Director, Meharry Vanderbilt Alliance
Associate Professor of Medicine
Vanderbilt University School of Medicine
and Meharry Medical College
AAMC Meeting
February 12, 2015
What is stakeholder engagement?
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Patient- (1) a person who has lived with and/or experienced
an illness or injury, (2) a caregiver or family member of such a
person, or (3) a member of a relevant advocacy organization.
Stakeholder- all other members of healthcare community, such
as clinicians, hospitals and health systems, purchasers, payers,
industry, training institutions, and policy makers.
Engagement- A bidirectional relationship between the
stakeholder and researcher that results in informed decisionmaking about the selection, conduct, and use of research.
PCORI; Concannon et al, 2012; J Gen Intern Med 27(8):985–91
Benefits of Engaging Patients in
Research
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Patients and consumers bring experiential knowledge, which is only
gained by having the daily experience of living with a certain
disease or condition or living in a certain community.
It is more practical and complements the researchers’ scientific
knowledge.
Engaging stakeholders can
 Prioritize topics important to patients
 Identify outcomes & comparators relevant to patients
 Improve patient enrollment and decreases attrition
Enhance dissemination (more meaningful and understandable)
 Increase chances of uptake of research results
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Leshner et al 2013; Michener et al 2012; Frank et al 2014; Krumholz 2012
Challenges to Engaging Stakeholders
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A new concept for many researchers
Skills typically developed in rigorous research
training do not translate to identifying, recruiting
and convening stakeholders
Without training and experience, strategies are
often ineffective, burdensome and leave
stakeholders feeling disenfranchised
Becoming proficient requires training and hands-on
experience, which may take years
Research infrastructure may be limited
Mallery 2012; Staley 2009; Garces 2012
The Community Engagement Studio
Community Engagement Studios (CE Studios) are
dynamic, consultative sessions that are specifically
intended to elicit patient, community or other
stakeholder input on a research project. The process
is more deliberative than a focus group and the
participants are compensated as stakeholder
"experts," not research participants.
Community Engagement Studios
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Structured process of eliciting projectspecific input
May be used in any phase of translational
research
Stakeholders selected based on
researchers’ needs
An experienced core team identifies
stakeholders and prepares them for
engagement; reduces burden to researcher
Joosten, et al. (in press). Community Engagement Studios: A Structured Approach to Obtaining Meaningful Input from Stakeholders to Inform Research.
Academic Medicine.
Community Engagement Studio
Request for CES
CES team reviews
requests
Researcher
Consultation
with CES team
Identifies
researchers’
needs
Determines
stakeholders’
characteristics
Community Engagement
Studio Team
Coaching on engaging
non-researchers
Facilitated Meeting
Researcher Outcomes
- changes in knowledge,
attitudes, study design
- more patient-centered
interventions,
comparators, and
outcomes
- usefulness of evidence for
decision-making
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Researcher presentation
Stakeholder feedback
Co-learning experience
Summary of oral and
and written
stakeholder feedback
Stakeholder
Recruit
“experts”
Pre-meeting
training
Stakeholder Outcomes
- perceptions of value,
relevance and
acceptability
- changes in knowledge
and attitudes about
research
- relevance of outcomes to
patients
Levels of Community Involvement
Funded by the National Institutes of Health (NIH) Clinical and Translational Science Award (CTSA) program, grant (U54TR000123). The CTSA program is led by the NIH's National Center for Advancing Translational Sciences (NCATS).
Clinical trial recruitment before and after a
Community Engagement Studio
Before: No participants enrolled after 3 months
of active recruitment
After: Targeted enrollment reached ahead of schedule; 100%
retention in randomized, blinded, placebo controlled trial with 10
study visits
CE Studios address a number of
barriers to stakeholder engagement
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Time commitment for both researchers and stakeholders
minimized
CE Studio team guides the selection of stakeholders based
on characteristics required to provide researcher with
specific input
Stakeholder recruitment done by CE Studio team, not
investigators
Researchers receive coaching in stakeholder engagement
Preparation for stakeholders provided pre-meeting
A trained/neutral facilitator moderates the sessions
Compensation provided to stakeholders
Community Engagement Studio Summary
Proven method for meaningfully engaging community members
 Establishing infrastructure is necessary for sustainability of communityengaged efforts
 Appropriate compensation standards for experts must be developed and
implemented
 Community engagement is appropriate and necessary in all stages of
research
 CES model easy to replicate and adaptable in varied contexts
 Not a community advisory board, but opportunity to actively engage
community and receive input
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Consuelo H. Wilkins, MD, MSCI
[email protected]
www.meharry-vanderbilt.org