Community Based Participatory Research through
Coalition Building in a Suburban Environment
Melody S. Goodman, PhD
Assistant Professor of Preventive Medicine, Graduate Program in Public Health
Director, Center for Public Health & Health Policy Research
Stony Brook University
Jewel D. Stafford, MSW
Priscilla A. Barnes, MPH, CHES
Center for Public Health &
Health Policy Research
Western Michigan University
Stony Brook University
Purpose
Describe social
determinants that
contribute to health
disparities and the impact
on Long Island residents
Discuss the multifaceted
approach that engages
communities to address
identified concerns
Utilize community forums
and coalition building as a
vehicle for communitybased participatory
research
Investigator-Driven
Questions
How do researchers collect
information about
communities that
disproportionately
experience health
disparities when the data is
not available?
How do researchers use
coalitions as a vehicle for
community-based
participatory research?
Long Island’s Growing Racial Diversity
The non-white population of Long Island has increased by
56% between 1990 and 2000
The non-white population has grown from 16% of the total
population in 1990 to 24% in 2000
– African American (8%) and Hispanic (10%) residents
represent the largest minority populations
– The Hispanic population is the fastest growing minority
population increasing by 71% in the 1990’s
– The African American population increased by 33% in
the 1990’s
Although Long Island is growing more diverse it is not more integrated
Source: U.S. Census Bureau
Long Island: Residential Segregation
3rd most segregated region in the nation
Black White Index of Dissimilarity for Long Island is
74.4
In 2000, ten census tracts accounted for 60% of
Long Island’s African American population
Hispanic White Dissimilarity Index for Long Island is
47.2
Majority of minorities in Long Island live in segregated
communities regardless of their income
Sources: Erase Racism, NYCDOH Task force 2003, Rusk 2004, Long Island Index 2004
Where do Blacks live on Long Island?
http://www.cmap.nypirg.org
Where do Hispanics live on Long Island?
Source: http://www.cmap.nypirg.org
Where do Native Americans Live on
Long Island?
Source: http://www.cmap.nypirg.org
Race/Ethnicity of Public School Students
The majority of Long Island's students of color are
concentrated in 13 of its 127 school districts and attend
"high-poverty" schools with inadequate resources
71% of African American students and
55% of Hispanic students would have to
change schools to reach integration
Race, Space and Income
Analysis of Long Island census tracts by income indicate that
African American and Hispanic residents are concentrated in
low and moderate income census tracts
The lowest income census tracts in Long Island are 40%
African American and 45% Hispanic
– Low income tracts have median income less than 50% of the county
median
Racial Characteristics of Long Island
Census Tracts by Income 2003
100%
89%
90%
80%
80%
70%
60%
51%
50%
45%
40%
40%
30%
20%
21% 23%
11%
6%
10%
9%
2%
3%
0%
Low Income
Source: Federal Financial
Institutions Examination
Council;
http://www.ffiec.gov
Moderate Income
Middle Income
Upper Income
Census Tract Income Characteristic
% White
% African American
% Hispanic
Source: Federal Financial Institutions Examination Council http://www.ffiec.gov
Residential Segregation
Neighborhoods are separated by race
– Established as one of the many causes of the disparities in health between
whites and blacks
Differences in the social and physical environment that affects
health outcomes
–
–
–
–
–
–
–
Socioeconomic status
Income
Education
Housing
Social capital
Access to and quality of goods and services
Access to and quality of medical care
Segregation is often more than just the physical isolation of
people
– It is isolation from opportunity or opportunity structures
– Segregated minority Long Island neighborhoods have higher poverty
rates, lower incomes, poorer schools, older housing stock and lower
homeownership rates
Challenges
Traditional health indicators mask true picture
No cookbook solution to community engagement
Perceived tension among communities of color
Perceptions of Academic Institutions
Education
Geographic landscape and isolation
Transportation
Access
Undocumented residents
Uninsured and underinsured
Lack of sufficient data to demonstrate existing health inequities, problems
and the unique needs of minority and medically underserved communities
How can we improve minority health
outcomes?
‰ Utilize research methods to demonstrate the
unique needs of our community, county and
Long Island
ˆ Evidence-Based Public Health
Increasing community participation to identify
needs effectively
ˆ Community Based Participatory Research
Develop and prioritize a comprehensive action
plan with long term sustainable results
ˆ Coalition building
Conceptual Framework
Multidisciplinary team
Transition from anecdotal evidence to
evidence-based public health
ty
i
n
u
t
m
n
e
m
Co essm
s
s
A
Community
based
Participatory
Research
Community
Engagement
& Organization
Coalition
Building
Community
Health
Improvement
Community Engagement
Establish trust with community through a long-term
continued presence
Provide a sustainable community based infrastructure
– Develop a shared vision through collective action
– Empowers and educates community members
Identify concerns and develop culturally appropriate
solutions to improve minority health outcomes
Engaging the community is the foundation for building
trust and establishing long-term relationships
Mini-Summits on Minority Health
Community Assessment & Engagement
Mini-summit I – July 25, 2007 Race, Class and Public Health
Unite a group of action-oriented individuals with a shared vision to
improve health outcomes and reduce the health disparities
Identify areas of concerns, develop goals and recommend strategies to
achieve the goals
Mini-summit II – October 10, 2007 Introduction to CBPR
Mini-summit III – February 28, 2008 SMHAC Ribbon Cutting Ceremony
Findings from the Mini-Summits
Identified issues of concern
–Transportation
–Cultural competency and sensitivity
–Medicaid and Insurance
–Advocacy, training and education
–Lack of county level data collection efforts
Self-Sustaining entity or coalition
Utilizing Community Based Participatory Research
–Requested CBPR Training
Suffolk County Minority
Health Action Coalition
First Coalition Meeting – 6/11/08
Suffolk County Minority Health Summit – 10/20/08
ƒ Diverse group of action oriented community members, key
leaders and health professionals
ƒ Goal to improve health outcomes, and reduce the health
disparities affecting minority and medically underserved
populations in Suffolk County
ƒ Seed grant funding to form SMHAC
ƒ Developed five committees
™Cultural Competency Committee
™Data Collection Committee
™Insurance Committee
™East End Committee
™Coalition Structure (Executive) Committee
Coalitions: The Power of Partnerships
Collaboration that brings people and
organizations together to improve health, health
care, and the functioning of the health system
Groups coming together to combine their
perspectives, resources and skills- creating
synergy
“Synergy” enables a partnership to produce
something that no one organization could have
Lasker & Weiss, 2003
developed alone
Community-based
participatory research
Collaborative approach that equitably involves all
partners in the research process
– Community organizations, Community members, Activist, Civic
leaders join forces with academic researchers (faculty, staff and
students) to produce knowledge that is used for the benefit of the
community
Recognizes the unique strengths that each brings
– Values local community’s perspectives and seeks active
engagement from all facets of the community at each phase of
the research process
W.K. Kellogg Foundation
Community Health Scholars
Program (2001)
Edward Ginsberg Center for
Community Service and
Learning
Community Alliance for Research
Empowering for Social Change
(CARES)
NIH Partners in Research-(R03)
™Collaboration between CPHHPR/SBU and Literacy Suffolk
Inc. to improve research literacy
™Sponsored by National Institutes of Health grants
1R03HD061220 (Stony Brook) and 1R03HD061219
(Literacy Suffolk, Inc.)
™Train 20 community members/community health workers to
identify the needs of the community and utilize research as a
mechanism for social action and social change
™16 libraries have signed up to be CARES designated sites
CARES Specific Aims
Unite key community stakeholders to improve health
outcomes by pooling member resources into one
comprehensive community based research network
Enhance the community’s knowledge and understanding of
research
Build the infrastructure for community-based participatory
research that explores and addresses community health
concerns
Develop evidence-based culturally appropriate interventions
Create a pool of trained community members that can serve
on institutional review boards and community research
advisory boards
Unexpected Outcomes
Service-learning opportunities for students
– The ripple effect
Paradigm shift in community with an increase in summitlike events and an increased knowledge of research
Emphasis on community-driven research agenda
– Data collection
– Cost-benefit analysis
Both scientific (NGHRI) and community-based (Literacy
Suffolk, Inc.) partners in health literacy initiatives
CPHHPR is a community resource
Developed a flexible framework that set boundaries while
allowing community members to provide content and
direction
CBPR Approach to Eliminating Health
Disparities
“Health Disparities is a fight that can be won
if our most oppressed communities can be
fully engaged as partners in identifying,
exploring and taking action to address the
social and health problems they- not we
as outsiders- care most deeply about.”
Minkler 2000