3rd National Community Partner Forum on
Community-Engaged Health Disparities Research
April 29-30, 2014 ~ Chicago, IL
Ann-Gel Palermo, CCPH Board Chair-Elect
Harlem Community & Academic Partnership, NYC
Elmer Freeman, Past CCPH Board Chair
Center for Community Health Education
Research and Service, Boston
Presentation Outline
 Community-Campus Partnerships for Health
 Key Concepts
 Building from the 1st and 2nd Forums
 Community Network for Research Equity &
Impact: Agenda for Action
 Goals for the 3rd Forum
Mission
To promote health equity & social justice
through partnerships between
communities & academic institutions
Defining Community
CCPH board of directors, 2005
There is no “one” definition of community
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Geography
Age
Ethnicity
Gender
Sexual orientation
Disability, illness or health condition
Common interest or cause
Shared values or norms
Defining Community
CCPH board of directors, 2005
Defining “community” in the context of community-academic
partnerships and community-engaged research is more
about the process of asking questions than about a strict
definition of who “is” community or “represents”
community:
 Are those most affected by the problem at the table?
 Are those who have a stake in the issue being addressed at
the table?
 Are those with resources (e.g., knowledge, connections,
funding) needed to address the issue at the table?
 Do they play decision making roles?
Principles of Partnership
CCPH Board of Directors, 1998, 2006 & 2013
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Form to serve a specific purpose and may take on new
goals over time.
Agreed upon mission, values, goals, measurable
outcomes and accountability for the partnership.
Relationships of mutual trust, respect, genuineness, and
commitment.
Build on identified strengths and assets, but address
needs and increase capacity of all partners.
Balance power among partners and enables resources
among partners to be shared.
Make clear and open communication an ongoing priority.
Principles of Partnership
CCPH Board of Directors, 1998, 2006 & 2013
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Establish principles and processes with input and
agreement of all partners, especially for decision-making
and conflict resolution.
Feedback among all stakeholders, with goal of
continuously improving the partnership and its outcomes.
Partners share benefits of partnership's accomplishments.
Partnerships can dissolve and need to plan process for
closure.
Consider nature of their environment as a principle of
their design, evaluation and sustainability.
Partnership values multiple kinds of knowledge and life
experience.
Elements for an Authentic Partnership
Citation: Achieving the Promise of Authentic Community-Higher Education Partnerships:
Community Partners Speak Out! CCPH, 2007
What is Community Engagement in
the Context of Research?
“In research, community engagement is a process of
inclusive participation that supports mutual respect of
values, strategies and actions for authentic partnership
of people affiliated with or self-identified by geographic
proximity, special interest or similar situations to address
issue affecting the well-being of the community of focus.
Community engagement is a core element of any
research effort involving communities. It requires
academic members to become part of the community
and community members to become part of the research
team, thereby creating a unique working and learning
environment before, during and after the research. “
NIH Council of Public Representatives, 2008
Community-Based
Participatory Research
“A collaborative approach to research that
equitably involves all partners in the research
process and recognizes the unique strengths
that each brings. CBPR begins with a research
topic of importance to the community and has
the aim of combining knowledge with action
and achieving social change...”
W.K. Kellogg Foundation, 2001
Why Do CBPR?
Historically, research has…
• Rarely directly benefited and sometimes
actually harmed the communities involved
• Excluded them from influence over the
research process
• Resulted in understandable distrust of, and
reluctance to participate in, research
• Been labeled by communities as parachute,
helicopter or drive-by research
Why Do CBPR?
Interventions to improve health &
quality of life have often not been as
effective as they could be…
Not tailored to participant concerns &
cultures
Rarely include participants in all aspects of
design, implementation & evaluation
Focused narrowly on individual behavior
change with less attention to broader social
& structural issues
Why National Community Partner Forums?
 Community engagement in research is
central to understanding and addressing
disparities in health.
 There are few supports for communities
to engage faculty and institutions as
partners, or to conduct our own research.
 As more community organizations engage
in research, it is clear we need our own
networks for professional development,
mentoring and advocacy.
1st National Community Partner Forum on
Community-Engaged Research
December 5-7, 2011 ~ Boston, MA
2nd National Community Partner Forum on
Community-Engaged Research
December 5-7, 2012 ~ Washington DC
CCHERS Mission
To engage institutions, health providers and
communities, in education, research and
service partnerships to redirect health
professions education, improve health care
delivery, and promote health systems
change for ensuring health equity for all.
Goals
Promote community based, primary care oriented education for a range of
health professions students, from high school through graduate and
professional school, to improve community health services provided to
underserved populations.
Promote community derived and directed health services and clinical
research, in partnerships with academic medical center, government, and
university researchers, that focuses on health problems that impact diverse
urban populations.
Promote coordination of services and interagency collaboration among
universities, health services providers, community based organizations, and
community residents to create healthier communities.
Promote public and marketplace policy change in health professions
education, community health, and health care access to create an equitable
health care system for diverse urban populations and communities.
A Vision for the Future
Primary care for defined populations/communities.
Public health interventions to address social and
structural determinants of health
Community participation and empowerment.
Epidemiologic methods to identify major health
problems and guide clinical programs and research
Emerging professions diversifying the health care
workforce
New combinations of health personnel organized into
community health teams
Elimination of disparities in health/healthcare and
promotion of health equity
National Community Partner Forum
Community Network for Research Equity and Impact
Location: 27 states and DC
Setting: 80% urban, 11% rural, 3% frontier, 6%
Native Nation
Race/ethnicity*: 47% African-American, 23%
Caucasian, 20% Hispanic, 10% Mixed,, 8%
Asian, 4% Pacific Islander, 3% American
Indian/Alaska Native
Gender: 60% women, 40% men
Research experience: 57% involved in
community-engaged health disparities
research for over 5 years, 24% for 3-5 years,
16% for 1-3 years, 3% for less than one year
Research roles*: 70% research team member,
36% principal investigator (PI), 50% co-PI,
67% community advisory committee
member, 9% IRB member
* Multiple choices could be selected
The Message
For research to have any hope of moving the
needle on health disparities, communities of
color and low-income communities need to
have:
• Power in decisions made about research.
• Capacity and infrastructure to engage as
equal research partners with institutions and
conduct their own research.
• Significant roles in building the capacity of
academic institutions to engage and partner
with communities.
Recommendations
Re-define cultural norms and terms and coin new ones
– “We need to acknowledge and honor multiple ways of
knowing”
Develop research ready communities
– “As more established CBOs, we have a responsibility
to mentor & train newer CBOs”
Develop community ready researchers and institutions
– “We have a critical role to play in developing the
capacity of our academic partners”
Compensate communities for research and teaching
roles
– “Our expertise is not free”
Exchange existing and develop new resources
– “There’s no reason to reinvent the wheel”
Recommendations
Cultivate funders
– “Social justice funders who ‘don’t fund research’ may
invest in CBPR”
Hold funders, institutions, and researchers accountable
– “There’s a lot of rhetoric about CBPR – but is it really
happening on the ground?”
Change research ethics review policies and practices
– “Ethical research is more than protecting individual
study participants”
Cultivate and position leaders
– “We need to position leaders for high impact positions
& support them through the process”
Change NIH policies and practices
– “It’s a no-brainer: funds for community research
infrastructure should come to communities”
Agenda for Action
Leadership Development
– Communities want a shared, balanced, and
equal ownership stake in the decision making
system for the research enterprise at the
federal, state, local and academic levels.
– Research funding agencies must make
meaningful financial investments to ensure
that community leaders participate on
national advisory councils, grant review
panels and policy-making bodies related to
research and that their voices are heard.
Agenda for Action
Accountability
– Research institutions must be held accountable for
equitable partnerships through clearly articulated
memoranda of understanding with communitybased organizations that describe the principles that
will be followed and a plan for how these will be
monitored and evaluated.
– Public research funding agencies should establish a
minimum set of standards when making grants to
research institutions for community-engaged
research. These would include, for example:
Agenda for Action
Institutional Review Boards (IRBs) &
Ethics
– Funding is needed to support the start-up and
continued operations of community IRBs and
community-based research review boards.
– These entities – accountable to the
communities they serve and represent – play
critical roles in ensuring that community risks,
benefits and feasibility of proposed research
are carefully considered.
Agenda for Action
Research Funding & Policy
– Community leaders, community-based
organizations and their allies must advocate
for supportive changes in research funding
and policy that lead to:
– We must join forces with other like-minded
networks to strengthen our collective voice to
advance research equity and impact.
Agenda for Action
Training & Mentoring
– The successful integration of communities
into community-based participatory research
requires an organized network of seasoned
community leaders and community-based
organizations to convene and coordinate peer
training and support.
– The national network that has emerged from
the two forums, with support from
Community-Campus Partnerships for Health,
is poised to serve in that role.
Moving Our Agenda Forward
 Formed the Community Network for Research Equity
& Impact for peer mentoring, programs and
advocacy
 Created Academic Allies workgroup
 Presented Action Agenda to Institute of Medicine
and Congressional Black Caucus Health Braintrust
 Released report "Community Leaders from Across
the US Call for Health Research Equity and Impact”
 Held regional forums in New York and North
Carolina
 Conducted coaching conference calls
 Obtained funding to hold this 3rd forum!
Our Goals for Today
Support CBOs to play significant roles as partners
in research, ultimately ensuring that the results
of research are used to eliminate health
disparities and achieve health equity in their
communities.
Equip CBOs with knowledge, skills and networks
to:
– Successfully negotiate community-academic research
partnerships and fully engage as research partners
– Serve in leadership roles pertaining to research practice,
policy and funding
– Establish or strengthen community IRBs and research
review committees
– Effectively contribute to and benefit from NIH funding
Questions to Consider
1. How do we ensure that communities most affected by
health disparities have a voice at the tables that decide
what research gets conducted, how and by whom?
2. How do we support communities most affected by health
disparities to conduct and manage their own research?
3. How do we ensure that communities work as equal
partners with universities and other institutions to make
sure that community research interests are met?
4. How do we ensure that social justice is central to
community-engaged research?
5. How do we grow and sustain the Community Network for
Research Equity & Impact?
6. What steps will you take when you get back home?