Academic Research Partnerships: Issues
And Challenges
BY
Aida L. Giachello, PhD
JACSW-Midwest Latino Health Research, Training
and Policy Center
University of Illinois-Chicago
aida@uic.edu
&
Margaret Davis, RN, MSN, FNP
Health Care Consortium of Illinois
margaretadavis@yahoo.com
Presentation at the Minority Research Training Institute,National Televedio Conference,
University of North Carolina-Chapel Hill, School of Public Health, June 21,2001.
Objectives of Presentation
• To discuss some of the issues and challenges in
establishing academic research partnerships with
primarily community-based organizations
• To stress the importance of community participatory
research models and how to link research with social
action
• To illustrate with case studies strategies for culturallyappropriate research partnerships
• To delineate strategies that will keep researchers true
to the principles of public health
• To share lessons learned
The Midwest Latino Health Research,
Training and Policy Center
JACSW-University of Illinois-Chicago
&
The Health Care Consortium of Illinois
UIC-Midwest Latino Health
Research Center
• Is a 10 year old outcome research center
that focus on issues of health disparities
primarily among Hispanic/Latinos and
African Americans in the areas of chronic
conditions and maternal and child health
following a community participatory
research model
UIC JACSW Midwest Latino Health Research,
Training & Policy Center
UIC
Natioal partners: REDES EN ACCION-Cancer
Network
Jane Addams
College of
Social Work
Midwest
Latino Health Research, Training
and Policy Center
Regional Advisory Board
Latino Research
Network
Material
and Child
Health
Training and
Mentorship
Data Base
Management
Women
Child &
Fam. Welfare
Health
Students care
Faculty
Providers
Chronic Conditions
-5Asthma
-Diabetes
-Hypertension
-Cancer
-Other
Univ. (e.g.,-Schools of Public Health
-Colleges of Nursing,)
--Hospitals & clinics;
---Churches
-Other Human Services Organization
Contract and Grant
Development
Executive Committee
Research
Cross Cultural
Assessment
& interventions
National Ltino Council on alcohol & tobacco
Policy & Research
Dissemination
-Resources Center
-Scientific Lectures
-Briefing Policy Papers
-Directory of Latino Health
Services Researchers
-Annotated Bibliographies
-News letters/Bulletins
-Manuscripts/Publications
-Coalition Building
-Others
Technical Assistance
Community
Health
Education
Community
Based
Organizations
Minority
Inv.
Health
Care
Providers
December 18,00
UIC-JACSCO MIDWEST LATINO HEALTH RESEARCH,TRAINING & POLICY CENTER
Example, Current Research & Training Programs
Diabetes
(Multi-site studies)
Cancer
(Redes En Accion)
Tobacco
National Partners
(multi-site studies
Partners
-Univ. of California San Fco.
-Baylor College
-Brooklyn Hosp. Center- NY
-Univ. of Texas S. Antonio
-San Diego State University
-Latinos for Healthy Ilinois
-National Latino Council on Alcohol &
Tobacco. (LCAT)
Regional Partners
Wisconsin Latino
Health Organization
Michigan
Eastern
University
Indiana
Wishard Health
Service
Minesota Hispanic
Network
Nebraska
Office of Minority
Health and Human
Service
C:/Research Program.ppt
Ohio Adelante
INC
Kansas
Cancer
Information
Service
Illinois
Chicago
Dept of Health
(Hispanic Health
Coalition)
Illinois-Dept of Health
Cancer Information
Service
UIC College of Medicine
-Hispanic Center of Excellence
- Dept of Oncology/Hematology
Norwegian American
Hospital’s women’s
Health Center
Y-Me National
Breast Cancer
Program
Health Care Consortium of
Illinois
• A coalition of community-based health and human
services organizations working in the areas of
maternal and child health, child welfare, asthma,
diabetes and other critical community issues
• Under the leadership of Salim AlNurridin,
Executive Director, the organization started its
work over 10 years ago, in the Chicago Southside
communities and gradually expanding its
geographical area to include the state of Illinois
Importance of Black and Brown
Partnerships
US Census 2000
%
% 1990-2000
in Population Change
Hispanics
Blacks
35.3 million 12. 5%
36.4 million 12.6%
– Black only 34.6 million
– Black &
60%
20%
12.3%
Other race
1.76 million
Note: Hispanic count does not include PR or undocumented
workers or census undercount
2000 Population Composition by
Race/ethnicity
White
Black/AA
Hisp/Latino
Am. India/AN
Asian
N. Hawaiian/OPI
211.4 million
34.6 million
35.3 million
2.4 million
10.2 million
0.3 million
% US Pop
75.1%
12.3%
12.5%
0.9%
3.6%
0.1%
Black and Brown Partnerships
(cont)
Similarities in
• Socioeconomic disadvantages
• Problems with accessing the health and human
services systems
• Health beliefs
• Health disparities
• Religiosity/spirituality
• Community Orientation
• Key in creating equity and resource distribution
HCI, Inc., contn
• HCI is an administrative service organization
which brokers services it 30 member agencies
• Programs activities
– Healthy Start Southeast Chicago
– 1000 Maternal/Child clients
– Health Works
• Medical Care for 25,000 wards of the state
– Senior Care
• Case management for 3000 seniors
Academic & Community
Research Partnerships
• Formal and informal grouping of organizations
and academic institution(s) coming together to
achieve common goals or address common
problems and where research (e.g., assessment
of needs and asset, clinical trial recruitment) is
the main area of one of the main area of activity.
• The partnership is complementary in nature
where each partner, usually, has a unique
contribution to make and/or a benefit to receive
Why Organizations want to partner with
Academic Institutions?
• Commitment to a particular research issue
• Opportunity to have “contact”, to be in the
“network”, or to gain credibility
• Opportunity to obtain the latest information and
technology, financial resources, jobs and training
opportunities
• Opportunity to complement each other, to share
resources and to work in a cost-effective way
• To minimize competition
• There is a perceived “pay-off”. Organizations believe
that there is something for them.
Why Academic Institutions want to
partner with community organizations?
• Opportunity to successfully apply for
funding where partnerships formation is
required
• To reach out to the “hard-to-reach”
• To make an impact in the community
• To be known in the community
Benefits of the Partnerships…
•
•
•
•
•
To do better research
To create training sites for the students
To integrate knowledge and practice
To improve the health of the community
To facilitate the translation of the research
findings
Partnerships…
• Are not a new concept
• In the 1960s to 1970’s
– Community health movement (50% of the centers
boards had community representatives)
– In 1980 they emerged in the area of health (e.g.,
partnership with hospitals to deal with cost-containment
issues)
• In the 1980s partnerships developed to study and
address HIV/AIDS, and other health issues
Partnerships….
• In the past year, Public Health has experienced
rapid change and is refocusing on populationbased care and core functions.
• Care has returned to community-level prevention
and interventions
• Therefore, population-based prevention research
is an ideal type of research for community
participation
Partnerships….
• Public health workers and researchers must
knowledge and skills in:
–
–
–
–
–
–
–
Community assessment
Epidemiological analytic thinking
Effective communication
Community development
Communication
Coalition-buildings
Policy and advocacy
Partnerships….
• Can be formed with public and/or
private institutions and/or with
community-based organizations
• They can be short-term or long-term
• Partnerships formation were promoted by
local and federal agencies (e.g., CDC,
HRSA, USDHHS-Office of Minority
Health)
Example of HRSA promoting
partnerships
Academic-Community Partnership
Initiative
• Partnerships are oriented toward the
needs of the community
• Major partners have equal status
• Improvement of Health as a major goal
Current Practices of Research on
People of Color
• The research activity on people
of color has not involved a
careful and diligent search of
available facts.
• The research on the health of
people of color health traditionally
has had limited or no utility in
understanding or solving important
health and social issues.
• Research on People of Color tends
to emphasize genetic and cultural
factors as solely responsible for
minority poor health and ignores
socioeconomic, political and
environmental influences.
• Most research on people of color has not
been culture or gender specific.
• Most research on poor women of color
has been done by researchers who
belong to either the middle class and/or
have a middle class mentality or
framework in conducting research
• Most research on people of color have
not included them as part of the research
team, and when they do, they seldom are
included in leadership roles
People of color are arbitrarily excluded
from studies because of:
• financial constraints
• inconvenience to the research
team
• language barriers
• lack of familiarity
• personal preference of the
investigator
• In behavioral research, the research
hypotheses and overall research
design tend to stress a cultural
deficit model that reinforces, as a
result of the findings, the victim
blaming ideology
In summary,
The research process has included
methods of observation, criteria for
validating facts and theories that
intentionally or unintentionally have
been designed to justify pre-conceived
ideas and stereotypes of people of
color,
and consequently…
have reinforced in our
society, traditional patterns
of power, status and
privilege (Hixson, 1993)
Re-Framing the Research
Agenda
• Rethinking research:
-Research is done within a
socioeconomic, historical and political
framework.
-We need to question the myth of
“research” as inherently scientific,
objective, or useful
Re-Framing the Research
Agenda (cont.)
–Research can be “scientific”,
but it can also be political,
racist, or classicist
–Unlearning old “knowledge”
is as important as new
learning
Re-Framing the Research Agenda
(cont.)
Therefore,
The research agenda is one of confronting
issues of power, politics and racism
– Attitudes, beliefs, and perspectives are as
important or more than “knowledge”
Re-Framing the Research Agenda
(cont.)
• Moving from research “on” minorities to
research “with” or “by” minorities
– (You can’t explain what you don’t
understand)
• We have to move beyond understanding
the problems to solving them
– (Beyond what we know -- to what we
can do)
Re-Framing the Research Agenda
(cont.)
• Becoming effective “consumers” of
research (understanding how critical
research is for policy implications)
• Minority Research entities (centers)
are critical for establishing and
challenging legitimacy
Barriers to University and
Community Partnerships
Barriers associated with:
•
•
•
•
•
Academic Institutions
Researchers
Research Participants or Subjects
Research Process
Community
Barriers Related to the Academic
Institution
• Limited involvement in minority
communities
• Limited or no reward system for faculty to
work with communities (tenured-track
Faculty are particularly discouraged)
• No economic investment in communities
• Limited services to communities (e.g.,
medical care, job opportunities, technical
assistance)
Barriers Related to Researchers
• Limited experience working with
minority Communities
• Limited skills and knowledge about
–how to access community gate
keepers
–community group
dynamics/politics
Barriers Related to Researchers
(cont.)
• Do not see benefits of having minority
investigators in research team or having
community representation
• Poor detailed planning in the design of
minority health research
• Lack cultural, gender, age & educational
appropriateness in their research
approach
Barriers Related to Researchers
(cont.)
• They come to community when
they need letters of support for
grants
• Partnership negotiations with
communities at times are not made
on an equal basis
Types of Investigators
• Committed to improving the health of the
community (but limited vision about
empowerment and capacity-building)
• Duo Personality (“Talk the Talk but don’t
walk the walk”)
Typology…
• “ The politically correct” Investigator
(bureaucratic/and frustrated researcher.
They think they are doing the right,
they get burned-out, but no opportunity
for promotion)
• Activist researchers (committed to
improving health, understand the
issues and the political processes. Use
research for action and social justice.)
Barriers Related to the Research
Process
• Limitations of data for planning and
implementation on studies on People
of Color
• Limited research funding
• Limited minority research
infrastructures or centers
• Poor data collection instruments
Barriers Related to the Research
Process (cont.)
• Limited participation of people of color
in local and national Organizations,
foundations, government entities where
research priorities are being developed
Barriers Related to Research
Participants or Subjects
• Distrustful attitude
• Socio-cultural
• Linguistic
• Socioeconomic
• Geographic
• Fear of research
due to history of
abuses
• Limited access to
care
• No monetary
incentive
Barriers Related to Community
Leaders
• Lack of trust due to history of
oppression, abuses and violations of
individual rights (e.g., Lack of
informed consent, confidentiality)
• Lack of understanding about the
importance of research for public
policy and program planning and
implementation
Barriers Related to Community
Leaders (cont.)
• Limited understanding about
how universities operate and
work
• Community leaders have
different expectations of the
research partnerships
Community Expectations
• Respect
• Equal Partnership in terms of decisionmaking and financial resources
• Technical Assistance
• Job opportunities
• Training
• Collaboration in Publications
Main Strategy:
Community Participatory
Research Models
“ Any research study must include the
qualities of respect, honesty, and integrity.
Participatory research should be the “gold
standard” toward which all federally funded
research aspires.” in Building Community
Partnerships, 1997 written by CDC and other
federal agencies representatives.
Participatory Research
Definition
• Calls for the active involvement of the
ordinary people in the target community in the
collective assessment/investigation of their
daily realities in order to transform it.
• Community members bring knowledge about
the culture, social norms and network, and
also about the community health and how the
research should be conducted.
Participatory Research (cont)
Key processes:
• Develop, jointly, a set of priorities and
research questions
• Promotes collective investigation and
assessment of the problems and issues
facing a community with the full and active
participation of its residents
• It is an educational process for both the
community involved and the “researchers”
Participatory Research (cont)
Key Processes:
• Development of questionnaires, data
collection, analyses and dissemination are
through methods which are relevant and
sensitive to the social and cultural context
of the people
• Encourages collective action aimed at
both short-term and long-term solutions to
the problem (international Council for Adult
Education, 1993).
Participatory Research (cont)
• Employs popular education
• Creates consciousness-raising among
community residents
• This leads to a state of readiness, that
can be enhanced through leadership
development
• Residents and providers can become
effective agents of social change while
building community capacity-building.
Participatory Research Models
(cont.)
• Provides the opportunity to benefit the community
with program and services
• It institutionalizes activities in the community
• It embraces personal and community
empowerment as:
• Philosophy
• Process
• outcomes
Example 1
COMMUNITY STRATEGIES TO
ADDRESS ENVIRONMENTAL
RISKS: THE BLUE ISLAND
EXPERIENCE
Giachello, Rodriguez & Zayad. From Data to Social Action: A
community- University Partnership in Environmental Justice. M.
Sullivan (editor). Forthcoming Publication-APHA Book.
The Blue Island Experience (2)
• The Good Neighbor Committee (TGNC),
was formed in 1996
• TGNC, is a non-profit community
organization that advocate on behalf of
the health and social needs of the
community
• Environmental Justice is one of their
main goals.
The Blue Island Experience (3)
• In 1940 the Clark Oil Refinery was established in
this area, serving as the major employer to Blue
Island and surrounding communities
• On October 21, 1997, an explosion occurred at
the Clark Oil Plant. This raised public concerns
about safety issues.
• Community residents began complaining in large
scale of symptoms of illnesses, particularly
respiratory problems such as asthma.
Blue Island Experience (4)
• Representatives of The Good Neighbor
Committee approached the UIC-Midwest
Latino Health Research, Training & Policy
Center
• They heard about the work of the UIC
Latino Health Research Center in the area
of asthma through the media
Blue Island, Illinois
PARTICIPATORY RESEARCH & COMMUNITY ORGANIZING MODEL
1.
Partnership
Process
Formation
A
c
t
i
v
i
t
i
e
s
Orientation
Strengthening
2.
Community
Dialogue
Problem
Definition
Community
involvement
3.
CapacityBuilding
(Training)
-Air
Pollution
-Asthma
Research
methods
4.
Assessment
& Data
Collection
Face-toFace
Household
Other
Research
Methods
5.
Community
Organizing
Implementation
Action Plan
Community
Forums
Working
Groups
Policy
Community
Education
Training
Others
6. Development &
Other
committees
Resource
development
The Blue Island Experience (6)
In partnerships with Blue Island community
representatives, the UIC Latino Latino Health
Research, Training and Policy Center assisted in
conducting a community needs assessment.
Specifically, we
– Assisted in the development of a survey questionnaire
– We Trained and worked closely with community
volunteers as interviewers or data collectors.
The Blue Island Experience (7)
• Providing assistance in data entry and analyses
• Assisting in the development & implementation
of an action plan
The Blue Island Experience (8)
The Action Plan consisted of:
• community awareness and education about
asthma and other respiratory conditions
• town meetings and forums
• Effective use of the media
The Blue Island Experience (9)
Community Needs Assessment
Objectives:
• To document community symptoms and selected
illnesses and their relationship with environmental
pollution.
• To explore which geographical areas in the target
communities were most affected.
The Blue Island Experience (10)
Method:
• 500 face-to-face household interviews were conducted
based on a convenience sample.
• Information was collected on a total of 1106 persons.
• Data was collected between October & December,
1997.
The Blue Island Experience (11)
Selected Findings:
• 68% of the residents of Blue Island reported illnesses and
symptoms of illnesses
• Illnesses & symptoms of illnesses vary by census track.
• The percentage of illnesses related to environmental
pollution vary from 38.9% to 79.9% in some areas.
The Blue Island Experience (12)
Table I
Number of Symptoms & Illnesses by Census Track and by
Percentage of Total Respondents
Track #
Total #
respondents
Track 1
Track 2
Track 3
Track 4
Track 5
Track 6
Track 7
Track 8
181
81
249
123
116
107
95
154
Total
reported
symptoms/illnesses
121
38
199
79
73
73
37
67
% of total
illnesses
66.9%
46.9%
79.9%
64.4%
62.9%
68.2%
38.9%
43.5%
The Blue Island Experience (13)
Symptoms of illnesses most often reported:
•
•
•
•
•
headaches
Respiratory problems
Eye Irritation
Nausea
“flu like”
37.0%
24.5%
20.9%
19.8%
8.4%
(409)
(271)
(231)
(219)
( 93)
The Blue Island Experience (14)
Study Conclusions:
• Those residents living downwind of the
Clark Oil Refinery were most likely to
report symptoms of illnesses.
The Blue Island Experience (15)
• The closer in proximity respondents resided
to the Clark Refinery, the more prevalence
were the illnesses & symptoms.
• There was a positive correlation between
respondents years of residents in the
community and the severity of their
symptoms.
The Blue Island Experience (16 )
From data to Action:
• Press Conference
• Town meetings and community forums
The Blue Island Experience (17)
From Data to Action (cont):
• Building community coalitions: church
groups, PTAs, etc.
• Organizing the community into working
committees through The Good Neighbor
Committee
• Using the media for agenda setting
• Getting the attention & engaging in
negotiations with the Illinois and the
Federal Environmental Protection Agencies
The Blue Island Experience (18)
•
•
•
•
Challenges Encountered By Residents
Fear of lost of jobs if plant close
down
Fear of diminished property value
Fear of increased taxes
Fear of loosing refinery support in
sponsoring community events.
EXAMPLE 2
The Chicago Southeast
Diabetes Community Action
Coalition
(CSeDCAC)
REACH 2010
• A CDC demonstration project
• Two phase project
• Aimed at community mobilization and
organization
• Looking for effective and sustainable
programs
• Aimed at the elimination of health
disparities
Facts about Diabetes
• Diabetes Type 2 is an emerging condition
impacting everyone
• Recently is emerging among younger
populations, including children and
adolescents
• Represents a major public health problem
in terms of health burden and economic
• Latinos and African-Americans experience
an unequal burden
Diabetes is a Costly Disease
Reflected in:
• Billions of dollars in medical care
(ex., hospitalization, kidney dialysis,
amputations)
• Low productivity
• Premature mortality
• Complications (blindness,
amputations, heart diseases, etc)
Risks Factors for Diabetes
• Unmodifiable:
– Genetic or
hereditary
– Ethnicity (being
Latino)
– Age
– Gender
• Modifiable
–
–
–
–
Physical exercise
Diet
Weight control
Others (smoking,
drinking)
– Environment
System that can be Impacted
through Research partnerhip
Ecological Model
The Individual
The Family
The Community/Neighborhood
Health Care Delivery System
Other Macro System
Chicago Southeast Diabetes
Community Action Coalition
History
• Originally it was a maternal and child health
coalition working under the Healthy Start
Initiative through the HCI, Inc (formally SHC)
• Represented a coalition of primarily African
Americans and Latinos
• With REACH funding, coalition was expanded
CSeDCAC: Target Areas
• Action Planning area included 6
communities in Chicago South east
–
–
–
–
–
–
South shore
South Chicago
South Deering
East Side
Calumet Heights
Hegewisch
CSeDCAC:The History of
Southeast Side
• A suburb of Chicago until 1898
• Known as a center of international
transportation
• People from many lands settled here: Lake
Michigan was a shipping port; the railroads
provided jobs for all who wanted to work.
CSeDCAC: The History (cont)
• The heat of the urns of US, Republic, and
Wisconsin Steel heated the economy of these
neighborhoods with jobs.
• The shipyards and grain elevators also created
many jobs.
• These blue collar jobs provided work. A “blue
collar culture” was created and instilled
generation after generation. Children did not have
to go to college because they could easily get jobs
in the mills, ships, trucking or grain elevators.
CSeDCAC: 1980s Decline of Industry
& Neighborhoods
• In 1980, the steel industry which had built the
infrastructure of communities began to feel the pain of not
keeping up with the retooling of their plants.
• US and Wisconsin Steel Mills shut down their Chicago
plants
• Republic Steel downsized several times
• The steel industry’s infrastructure crumbled as we
purchased steel from Japan
• With the loss of the industry the shipping industry and
trucking industry also declined.(Domino effect)
CSeDCAC: Community
Description
• Low income and education, and high dependency in
public assistance
• Mortality higher for diabetes, unintentional injury,
homicide, pulmonary diseases, pneumonia and
influenza, heart diseases, and diabetes mellitus
• Rate of domestic violence is high
• Two of the communities experience high infant
mortality, babies born of low birth weight and teen
pregnancy
• Environmental condition is a serious problem due to
toxic waste
CSeDCAC: Example of Principles
• Commitment to Equity
• Challenging social and environmental inequalities
that affect health
• Collective decisions
• Collective action
• High quality, ethical research and interventions
• Ownership of the data
• Collective interpretation and dissemination of the
data
CSeDCAC: Principles (cont)
• Welfare of coalition members
• Institutionalization of programs which benefit the
community
• To pursue funding to support Programs
• Support diabetes-related community changes,
education, policy and actions that ultimately will
lead to positive health outcomes.
Kelly, M. Social Networks on the Use of Prenatal care
(forthcoming publication)
CSeDCAC: Mission Statement
“To assure and enhance access to quality health
services and quality of life of persons at risk and
with diabetes in the Chicago Southeast
communities through the establishment and
institutionalization of a diabetes coalition of
community residents, health and human services
providers, and persons living with diabetes, that
will engage in community approaches to reduce
diabetes and its consequences”
CHICAGO SOUTHEAST DIABETES COMMUNITY ACTION COALITION
PARTICIPATORY RESEARCH & COMMUNITY ORGANIZING MODEL
REACH 2010
1.
Coalition
Process
Formation
A
c
t
i
v
i
t
i
e
s
Orientation
Expansion
Strengthening
2.
Capacity
Building
(Training)
Diabetes
Today
Research
Methods
Ex. Focus
Groups
Others
3.
Data
Collection
Focus Groups
Telephone
Survey
Community
Leaders
Hlth providers
FGs &
Survey
Community
Assets/Inv
Secondary data
analyses , ex.
- vital Statistics
- hospital data-
4.
5.
Community Action Plan
Organizing
Community
Values
Forums
Goals/
Objectives
Working
Groups
Strategies
Policy
Training
Comm. Educ.
Prov. Training
Strengths &
Limitations
Resources
Needed
Work plans
Evaluation
6. Implementation of
Action Plan
Resource
development
CSeDCAC: Training and CapacityBuilding
•
•
•
•
•
•
•
•
Diabetes Workshops
Coalition-building
Community Planning
Diabetes Management Information and Patient
Tracking System (Cornerstone)
Quality Improvement
Research Methodologies (focus group facilitation,
telephone survey, community inventory)
Resource development (eg., proposal-writing)
Instrument development
CSeDCAC: Training and
Capacity-Building (cont)
Training activities targeted:
• Community leaders
• Community providers
• Persons living with diabetes-members of the
coalition
• Health Promoter/community lay health workers
• UIC undergraduate and graduate students (School
of Public Health, and colleges of Social work,
Medicine, Pharmacy)
CSeDCAC: Working Committees
•
•
•
•
•
•
Focus Groups Task Force
Health Care Providers Task Force
Telephone survey Task Force
Community Inventory Task Force
Committee on Epidemiology
Committee on Community Forums and
information dissemination
CSeDCAC: Committees Tasks
• Development of a Work Plan (list of
activities, identification of committee
members responsible, deadlines, etc)
• Development and revision of IRBs
• Instrument development and/or revisions
– FG guides, participant recruitment Criteria,
Participant Profile,etc
CSeDCAC: Committees Tasks
(cont)
–
–
–
–
Diabetes Risk Assessment Qx
Telephone Survey
Community inventory
Health care providers surveys
• Planning and Implementation of committee
assessment activities(logistically speaking)
• Analyses and interpretation of data
• Planning and implementing community forums and
town meetings activities, and other dissemination
activities (e.g., APHA presentation)
• Evaluation
1 - 2%
5%
LIVING WITH
DIABETES
3.4%
Diabetes with complication
and disability
-Poor quality of care
-Poor adherence
Barriers
UNDIAGNOSED
DIABETES
-People don’t want diagnosis
-No access medical care
-No preventive care
-Limited awareness
POPULATION AT RISK
FOR DEVELOPING DIABETES
POPULATION WITH NO KNOWN
RISK FOR DIABETES
Genetic; Race/ethnicity
lack of exercise
Diet; Obesity;Hypertension
Gestational DM
Birth weight > 9 lbs;
Age > 45 years
Giachello & Arrom
Model (1999)
CSeDCAC:Survey Design
•
•
•
•
•
•
•
Random Digit Dialing Telephone Method
3 Zipcodes: 60617, 60633, 60649
Selected persons over 18 with
Spanish and English instruments
Modeled after BRFSS
Acculturation Scale
Community and bilingual interviewers
CSeDCAC: Focus Groups and
Town Meetings
• 10 with people with Diabetes (1 in Spanish)
• 10 with people at risk for diabetes (1 in
Spanish)
• 2 Focus Groups with providers
• 2 town Meetings (1 in Spanish)
C
HI
C
AG
O
ST
H
E
RI
NG
SI
D
EE
19
HE
G
EW
IS
C
EA
D
26
SO
UT
H
AG
O
SH
O
RE
HI
C
24
HE
IG
HT
S
C
UM
ET
SO
UT
H
AL
C
35
30
25
20
15
10
5
0
SO
UT
H
TO
TA
L
Rate per 100,000
DIABETES MORTALITY BY SELECTED
SOUTHSIDE COMMUNITIES 1994-1996
32
25
18
21
Disparities in Lifestyle
70
60
50
40
30
20
10
Black
White
Hispanic
0
Physical
inactivity
Activity program Ever smoked Control diet/past
yr
Disparities in Risk Factors
35
30
25
20
Black
White
Latino
15
10
5
0
Mean BMI
Eat outside
home (#/wk)
Heart disease
Hypertension
High
cholesterol
CSeDCAC:Selected Health
Disparities
• High prevalence of type 2 diabetes (telephone
survey: AA: 16.6%; Latinos: 10.8%).
• Selected areas represented 20% of all diabetes
related hospitalization
• Partner hospitals diabetes inpatient care are at
times higher that diabetes ambulatory care
• High gestational diabetes
• Medicare Claim data indicate low use of home
blood monitoring device (range 10% to 22%
depending on community and ethnic group)
CSeDCAC: Disparities in the
Impact of Diabetes
60
50
40
Hospitalized/past yr
Unable to work
Fair-poor health status
30
20
10
0
AfricanAmer
NH Whites Hispanics
CSeDCAC:High Prevalence of Diabetes
Risk Factors in the Southeast Chicago
Community
•
•
•
•
•
•
•
•
•
Family History (First Degree Relatives)
Obesity
Poor Diet
Gestational diabetes
Hypertension
Dyslipidemia
Physical inactivity
Smoking
Diabetes related disabilities
CSeDCAC:High Prevalence of Diabetes
Risk Factors in the Southeast Chicago
Community
• Low testing for hgb A1c (around 36%)
• People eat out of their homes, in average, 5
days out of 7.
• About 54% reported eating in fast food
places, when they eat out
Action Plan
• Capacity building:
• Improving Quality of Care
• Patient Education
• Community awareness and education
CSeDCAC Group
Processes:key to success
• Building trust (with the inclusion of new
members)
• Building Social capital
• Development of Principles and Values
• Developing and implementing rules and
regulations
• Establish group goals
• Set rules and regulations
• Empowering people- through decision-making
process
CSeDCAC: Group Dynamics (cont)
• Set membership requirements
• Establish written memorandum of
agreements/understanding
• Have regular meetings with substantive agendas
• Identify and define the roles of Principal
Investigator(s), project staff and partners
• Develop decision-making framework and process
• Establish communication mechanisms
• Clear discussions about the budget, IRBs, and how
university works, and about expectations
Issues And Lessons Learned
• There is no single best way of organizing
communities, particularly poor communities
and community of color
Main Strategies
• Building Trust
• Distribution of Resources
Strategies
Other Strategies
• Familiarize yourself with the community in
questions (e.g., history, social and leadership
structures and norms, health and human services
and needs
• Establish contact with key community leaders and
with health and human services organizations
 Assess the conditions and issues that call for a
coalition and/or partnerships
Strategies (cont)
• Assess and use existing networks and structures
in placed, instead of establishing new ones
• Coalitions must be representative of all critical
sectors (e.g., Depts of health, church groups,
neighborhood health facilities and hospitals,
managed-care organizations, schools, etc.)
• Be careful in the selection of members process
Selection of Partners: Potential
Criteria
• Who is affected by the problem
• Who will benefit by the coalition/partnership
actions
• Who has worked on this problem before, or have
knowledge and/or expertise
• What are the resources that each potential member
has to offer to the coalition/partnership
• What are the credibility of individuals and
organizations being considered as coalition
members
Selection of Partnership:
Things to avoid
• Don’t invite people who don’t like you or who don’t
work well with you, or who question your
organization involvement
• Don’t invite people who don’t get along among
themselves
• Have strategies for people who don’t like you or don’t
like each other (eg., memorandum of agreement,
remind them of the benefits, etc)
• Once the partnership coalition is formed or during the
process of formation, issues of governance needs to be
addressed depending of membership size
Strategies (cont)
• Establish decision-making structure and
framework (decision- making power)
• Establish membership criteria and type:
individual and/or organization
• Establish rules and regulations (e.g., by-laws)
• Establish process for larger membership
participation in program and policy decisions
Strategies (cont)
• Have clear discussions about membership
benefits and services
• Have clear discussions about situations in
which the partnership or coalition might be
in competition with member organizations
for public or private grants and contracts
Tasks to Maintain The Partnership or
Coalition Once It Has Been Formed
1. Dealing effectively with group
dynamics
2. Managing the environment
3. Fulfilling research and other contract
commitment
Inner Group Challenges
• Maintain good relations through building trust
and group cohesiveness
– Members must set aside their egos for control
and for visibility
• Establish good line of communication
Communication must be
– Honest
– clear
– With good listening skills
Group Dynamics (cont)
•
•
•
•
Establish group goals
Set clear rules and regulations
Set membership requirements
Establish written memorandum of
agreements/understanding
• Have regular meetings with substantive agendas
• Identify and define the roles of Principal
Investigator(s), project staff and partners
• Develop decision-making framework and process
Group Dynamics (cont)
• Define the term community
• Define “community leader(s)”
Qualities of good leaders.
credibility
honesty
respect for others
respect for group process
flexible
fair
adapt behaviors according to
occasions
Group Dynamics (cont)
– facilitate group process
– bring people together
– Is/are task-oriented and emotional-oriented person
Is important to let the person with most ability to
lead
Group Dynamics (cont)
Indications that the group process and dynamics are fine:
• Members in the meetings are happy and smiling, they
are making jokes
• Members care for each other. They ask about the wellbeing of members and their families
• Members attend regular meetings and to commit to
tasks
• Meetings are productive in terms of substance, are
shorter and, runs smoothly
• There is high group morale and respect
• Group work gets done
When There is problems
with the partnership
• There is distrustfulness (particularly around
leadership and use of funds)
• There is group tension
• Some members will try to manipulate
activities and group processes behind the
scene
• Meetings are tense, long and very little is
accomplished or decided
Problems with Partnerships
• Researchers may feel a great need to control the
group process and may not trust community
representatives’ capability of learning or doing the
tasks assigned to them well
• Community representative tend to be more
“relational-oriented”
• At times there might be social distance between
researchers and community: issues of “they”
versus “us”
Problems with Research
Partnership (cont.)
• Researchers assume the role of “experts”,
they “know it all” because of technical
knowledge
• At times, researchers do not value the
contribution of minority investigators or
community workers
Other Problems Related to
Participatory Research
• Process is too slow
• Funding sources do not want to
approve equitable allocation of funding
to community partners
• It not yet well accepted by the
“scientific community”
Tasks relate to the Environment
 Engage in social marketing of research activities
and services of the partnership/coalition
 Assess partnership membership and expand
membership, if necessary
 Avoid duplication of services with those who
choose not to be part of your group
Activities related to the
Environment
• Be supportive and sensitive to other
partnerships/coalitions
• Establish credibility and integrity
• Promote the important group activities
being conducted on behalf of the
community
Conclusions
• It is essential to examine how the
research on the health of people of
color is being done. Who does it,
who benefits from it and who it
serves
• Working in collaboration is hard
work and is a slower process
Conclusions…
• The researchers and the health workers
and community representatives must
refine or develop:
– Facilitation skills
– Community organizing and coalitionbuilding skills
– Communication & negotiation skills
– Leadership development skills
Conclusions (cont.)
• Many so called research partnerships do
not truly involved the community (e.g,
residents or grass roots organizations
meaningfully)
• Many so called leaders of HSO’s are
only interested in what is there for them
(in terms of funding), and do not have
true commitment to improving the health
of the community
Conclusions
• The group dynamics can be quite
difficult if the researchers are not
prepared.
Recommendations
1. Funding sources must provide sufficient funding
to support collaborative work during the
demonstration projects, and continued TA after
the grant funding ends
“sustainability is necessary if successful research is to
to be translated into programs and lasting benefits
to the community” in Building Comm. Partnerships
(1997)
2. Building community and university partnerships
require universities to invest in neighborhoods
and in communities of color in a more
comprehensive fashion
Recommendations….
3. To correct the limitations in conducting
research on people of color we need to:
A) Train more investigators into
community action research
B) Encourage more minorities to get
into health professions and to
complete their HH, BA/BS, PhDs and
MDs
Recommendations….
C) Work closely with Universities to
hire more people of color in faculty
positions and assure that those
institutions are investing in those
individuals so they can be promoted
to tenured positions
Recommendations…..
4. Increase non-categorical funding for
community-based research done by
communities of color with re-authorization
of how indirect cost is distributed
5. Research on communities of color, should
include researchers of color in leadership
roles (PI)
Recommendations…..
6. To Establish minority Research
Centers. These Centers can:
• Increase data on people of color health
• Impact public policy
• Train new POC investigators including
students, junior and senior faculty on the
health of people of color
Recommendations
Minority Research Centers can…
• Improve cross-cultural research
methodologies
• Institutionalize the above efforts in
academic institutions
Recommendations….
7. Finally, Partnerships and Coalitions
need ongoing:
–Technical Assistance
–Training
–Sufficient funding
–In addition to public health
reseach goals there have to be
goals for community capacity