Community Partnered,
Participatory Research in
Mental Health Services
Community-based Participatory
Research: Recommendations and
Challenges
Margarita Alegria, Ph. D.
Academy Health, June 29, 2009
Creating Communities of Practice

July 24-25, 2006, held conference to
gather teams of researchers from NIMH
centers for mental health research from
UCLA/RAND, Georgetown University,
Cambridge Health Alliance, and
Washington University in St. Louis with
their community partners
Creating Communities of Practice



Discuss opportunities and challenges in
partnered research
Strategize for future directions in developing
CPPR as part of focus on community impact
in MH services research
Effort to expand field of partnered research
for quality improvement in mental health
Recommendations

Structuring the
Partnership

Setting Up the CPPR
Project

Developing Creative
Dissemination

Training
Recommendations
Structuring the Partnership


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Forming partnerships so that it is a win-win
situation for everyone
Acknowledging and communicating different
goals and needs of community versus those
of investigators not only as the partnership is
getting structured but as it progresses
Necessary to develop strategies to better
understand each others worlds-community
members to understand what research has to
offer and for researchers to sit in community
advisory boards learning about community
Recommendations
Structuring the Partnership

Recognize there will be shifts in power
structure during different parts of project

Celebrate small victories as a way to sustain
the partnership

Integrate support for leadership development,
knowledge transfer and data dissemination
Recommendations
Setting Up the CPPR Project


Make expectations about
each group’s role clear
from early phases of
project so that groups are
not disappointed with tasks
and process as it unfolds
Outline objectives of
project from very beginning
in terms of goals for
community and for
institution

Establish consensus on who
should lead CPPR/ grant
application and under what
circumstances.

In ongoing relationships,
partners should take turns in
leading grant applications.

At the same time, becoming
aware of funding agency’s
agenda is critical to ensure
success of the CBPR project
Recommendations
Setting Up the CPPR Project


Developing consensus on
outcomes of CPPR and
clarifying how data
collected might benefit
partners
Ensuring community has
access to the data and
results of project

Restructure grants so that
financial equity is part of
funding criteria

Require all grants conduct
partnership evaluation, along
w/ other evaluations relative to
process of implementing
partnership

Institutionalize partnership or at
least develop sustainable
infrastructure for partnership to
continue after research has
been completed
Recommendations
Setting Up the CPPR Project

Pay attention to end user
to make sure information
has relevance, sustains
community interest and
engagement

Salient to sustain trust
among stakeholders,
maintaining
communication and
transparency
Recommendations
Developing Creative Dissemination




Dissemination for program development, methods
to evaluate outcomes and partnership success.
Publication of process papers on community
engagement and partnerships by groups already
involved as well as information of what works and
what doesn’t work in partnerships
Sharing success stories of CPPR w/ policy makers
Assisting media in framing different encounters
from mental health perspective and from social
activism perspective
Recommendations
Developing Creative Dissemination


Description of developmental  Importance of advocacy as
stages of partnership and
part of dissemination
manuals of lessons learned
strategies and marshalling
community support
 Development of toolkit on
Joint presentations and
how to adapt and
publications by partners and
disseminate evidencerecognition of role of
based practices in the
community organizations in
success of community based community to establish
“community validity.”
research
Recommendations
Training

NIH training for community
partners

Continue to have special NIMH
reviews with CPPR experts for
CPPR applications

Workshops should be provided
to train young investigators in
CPPR methods, including
processing the data so it is
useful to community agencies
Challenges in Successful CPPRs

1.
2.
3.
When criteria for CPPR
successful collaboration
is at odds w/ scientific
criteria for successful
funding:
Outcomes-illness vs.
Sx/Wellness
Time-funding cycle
Design-contamination,
case management
services, randomization



Lack of infrastructure to
facilitate efficient budget
management of project
from community groups
Flexibility in negotiating
something concrete at the
same time vagueness is
penalized for not being
scientific
Stigma-PC of CBPR rather
than the need
Challenges in Successful CPPRs

View of short term
investment vs. long term
investment in outcomes.

Difficulty showing
community impact w/
limited resources for
evaluation and
dissemination

Perception of CPPR as a
soft science, low value

Risky career choice for
young investigatorspublication record, where
to get things publish, how
to convince Dept Chairs
good investment of time

The Token CBPR group in
grants

Measurement of Impact of
CBPR, doe sit matter