Academic Research Partnerships: Issues And Challenges

1
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_at_uic.edu
• Margaret Davis, RN, MSN, FNP
• Health Care Consortium of Illinois
• margaretadavis_at_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.

2
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
  culturally-appropriate research partnerships
• To delineate strategies that will keep
  researchers true to the principles of public
  health
• To share lessons learned

3

• The Midwest Latino Health Research, Training and
  Policy Center
• JACSW-University of Illinois-Chicago
• The Health Care Consortium of Illinois

4
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

5
UIC JACSW Midwest Latino Health Research,
Training Policy Center
UIC
Natioal partners REDES EN ACCION-Cancer
Network National Ltino Council on alcohol
tobacco Univ. (e.g.,-Schools of Public
Health -Colleges of Nursing,)
--Hospitals clinics
---Churches -Other Human Services Organization

Jane Addams College of Social Work
Midwest Latino Health Research, Training and
Policy Center
Regional Advisory Board
Contract and Grant Development
Latino Research Network
Executive Committee
Policy Research Dissemination
Training and Mentorship
Research
Technical Assistance
Cross Cultural Assessment interventions
Health care Providers
Students
Faculty
Community Health Education
Data Base Management
-Resources Center -Scientific
Lectures -Briefing Policy Papers
-Directory of Latino Health Services
Researchers -Annotated Bibliographies
-News letters/Bulletins
-Manuscripts/Publications -Coalition Building
-Others
Community Based Organizations
Chronic Conditions -5Asthma -Diabetes
-Hypertension -Cancer -Other
Women Child Fam. Welfare
Material and Child Health
Minority Inv.
Health Care Providers
6
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
Illinois
Michigan Eastern University
Wisconsin Latino Health Organization
Minesota Hispanic Network
Indiana Wishard Health Service
Norwegian American Hospitals womens Health
Center
Illinois-Dept of Health Cancer Information Service
Chicago Dept of Health (Hispanic Health
Coalition)
Nebraska Office of Minority Health and Human
Service
Ohio Adelante INC
Y-Me National Breast Cancer Program
UIC College of Medicine -Hispanic Center of
Excellence - Dept of Oncology/Hematology
Kansas Cancer Information Service
C/Research Program.ppt
7
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

8
Importance of Black and Brown Partnerships
9
US Census 2000

• 1990-2000
• in Population Change
• Hispanics 35.3 million 12. 5 60
• Blacks 36.4 million 12.6 20
• Black only 34.6 million 12.3
• Black
• Other race 1.76 million
• Note Hispanic count does not include PR or
  undocumented workers or census undercount

10
2000 Population Composition by Race/ethnicity

• US Pop
• White 211.4 million 75.1
• Black/AA 34.6 million 12.3
• Hisp/Latino 35.3 million 12.5
• Am. India/AN 2.4 million 0.9
• Asian 10.2 million 3.6
• N. Hawaiian/OPI 0.3 million 0.1

11
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

12
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

13
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

14
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.

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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

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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

17
Partnerships

• Are not a new concept
• In the 1960s to 1970s
• 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

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Partnerships.

• In the past year, Public Health has experienced
  rapid change and is refocusing on
  population-based 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

19
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

20
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)

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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

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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.

23

• 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.

24

• 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.

25

• 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

26

• 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

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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

28

• 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

29

• 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

30

• have reinforced in our society, traditional
  patterns of power, status and privilege (Hixson,
  1993)

31
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

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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

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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

34
Re-Framing the Research Agenda (cont.)

• Moving from research on minorities to research
  with or by minorities
• (You cant explain what you dont understand)
• We have to move beyond understanding the problems
  to solving them
• (Beyond what we know -- to what we can do)

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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

36
Barriers to University and Community Partnerships

• Barriers associated with
• Academic Institutions
• Researchers
• Research Participants or Subjects
• Research Process
• Community

37
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)

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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

39
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

40
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

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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 dont walk
  the walk)

42
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.)

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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

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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

45
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

46
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

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Barriers Related to Community Leaders (cont.)

• Limited understanding about how universities
  operate and work
• Community leaders have different expectations of
  the research partnerships

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Community Expectations

• Respect
• Equal Partnership in terms of decision-making and
  financial resources
• Technical Assistance
• Job opportunities
• Training
• Collaboration in Publications

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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.

50
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.

51
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

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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).

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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.

54
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

55
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.

56
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.

57
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.

58
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

59
Blue Island, Illinois PARTICIPATORY RESEARCH
COMMUNITY ORGANIZING MODEL
Process
1. Partnership Formation
2. Community Dialogue
3. Capacity- Building (Training)
4. Assessment Data Collection
5. Community Organizing
6. Development Implemen- tation Action Plan
A c t i v i t i e s
Community Forums
Problem Definition
Face-to- Face Household
Resource development
Orientation
-Air Pollution -Asthma
Working Groups
Community involvement
Other Research Methods
Policy
Strengthening

Research methods
Community Education
Training
Other committees
Others
60
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.

61
The Blue Island Experience (7)

• Providing assistance in data entry and analyses
• Assisting in the development implementation of
  an action plan

62
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

63
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.

64
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.

65
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.

66
The Blue Island Experience (12)

• Table I
• Number of Symptoms Illnesses by Census Track
  and by Percentage of Total Respondents
• Track Total Total
  of total
• respondents reported
  illnesses
• symptoms/illnesses
• Track 1 181 121 66.9
• Track 2 81
  38 46.9
• Track 3 249 199
  79.9
• Track 4 123 79
  64.4
• Track 5 116 73
  62.9
• Track 6 107 73
  68.2
• Track 7 95 37
  38.9
• Track 8 154 67
  43.5

67
The Blue Island Experience (13)

• Symptoms of illnesses most often reported
• headaches 37.0 (409)
• Respiratory problems 24.5 (271)
• Eye Irritation 20.9 (231)
• Nausea 19.8 (219)
• flu like 8.4 ( 93)

68
The Blue Island Experience (14)

• Study Conclusions
• Those residents living downwind of the Clark Oil
  Refinery were most likely to report symptoms of
  illnesses.

69
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.

70
The Blue Island Experience (16 )

• From data to Action
• Press Conference
• Town meetings and community forums

71
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

72
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.

73
EXAMPLE 2

• The Chicago Southeast Diabetes Community Action
  Coalition
• (CSeDCAC)

74
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

75
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

76
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)

77
Risks Factors for Diabetes

• Unmodifiable
• Genetic or hereditary
• Ethnicity (being Latino)
• Age
• Gender

• Modifiable
• Physical exercise
• Diet
• Weight control
• Others (smoking, drinking)
• Environment

78
System that can be Impacted through Research
partnerhip

• Ecological Model
• The Individual
• The Family
• The Community/Neighborhood
• Health Care Delivery System
• Other Macro System

79
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

80
CSeDCAC Target Areas

• Action Planning area included 6 communities in
  Chicago South east
• South shore
• South Chicago
• South Deering
• East Side
• Calumet Heights
• Hegewisch

81
CSeDCACThe 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.

82
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.

83
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 industrys infrastructure crumbled as
  we purchased steel from Japan
• With the loss of the industry the shipping
  industry and trucking industry also
  declined.(Domino effect)

84
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

85
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

86
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)

87
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

88
CHICAGO SOUTHEAST DIABETES COMMUNITY
ACTION COALITION PARTICIPATORY RESEARCH
COMMUNITY ORGANIZING MODEL REACH 2010
Process
1. Coalition Formation
2. Capacity Building (Training)
3. Data Collection
4. Community Organizing
5. Action Plan
6. Implemen- tation of Action Plan
A c t i v i t i e s
Diabetes Today
Focus Groups
Values
Community Forums
Resource development
Orientation
Telephone Survey
Goals/ Objectives
Expansion
Research Methods
Community Leaders
Working Groups
Strategies
Strengthening
Hlth providers FGs Survey
Strengths Limitations
Ex. Focus Groups
Policy Training Comm. Educ. Prov. Training
Resources Needed
Community Assets/Inv
Work plans
Others
Secondary data analyses , ex. - vital
Statistics - hospital data-
Evaluation
89
CSeDCAC Training and Capacity-Building

• 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

90
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)

91
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

92
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

93
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

94
1 - 2
Diabetes with complication and disability
5
-Poor quality of care -Poor adherence Barriers
LIVING WITH DIABETES
-People dont want diagnosis -No access medical
care -No preventive care -Limited awareness
UNDIAGNOSED DIABETES
3.4
Genetic Race/ethnicity lack of exercise Diet
ObesityHypertension Gestational DM Birth weight
gt 9 lbs Age gt 45 years
POPULATION AT RISK FOR DEVELOPING DIABETES
POPULATION WITH NO KNOWN RISK FOR DIABETES
Giachello Arrom Model (1999)
95
CSeDCACSurvey 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

96
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)

97
(No Transcript)
98
Disparities in Lifestyle
99
Disparities in Risk Factors
100
CSeDCACSelected 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)

101
CSeDCAC Disparities in the Impact of Diabetes
102
CSeDCACHigh 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

103
CSeDCACHigh 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

104
Action Plan

• Capacity building
• Improving Quality of Care
• Patient Education
• Community awareness and education

105
CSeDCAC Group Processeskey 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

106
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

107
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

108
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

109
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

110
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

111
Selection of PartnershipThings to avoid

• Dont invite people who dont like you or who
  dont work well with you, or who question your
  organization involvement
• Dont invite people who dont get along among
  themselves
• Have strategies for people who dont like you or
  dont 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

112
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

113
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

114
Tasks to Maintain The Partnership or Coalition
Once It Has Been Formed

• Dealing effectively with group dynamics
• 2. Managing the environment
• 3. Fulfilling research and other contract
  commitment

115
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

116
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

117
Group Dynamics (cont)

• Define the term community
• Define community leader(s)
• Qualities of good leaders. credibility honest
  y respect for others respect for group
  process flexible fair adapt behaviors
  according to occasions

118
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

119
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
  well-being 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

120
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

121
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

122
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

123
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

124
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

125
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

126
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

127
Conclusions

• The researchers and the health workers and
  community representatives must refine or develop
• Facilitation skills
• Community organizing and coalition-building
  skills
• Communication negotiation skills
• Leadership development skills

128
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 HSOs 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

129
Conclusions

• The group dynamics can be quite difficult if the
  researchers are not prepared.

130
Recommendations

• 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

131
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

132
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

133
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)

134
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

135
Recommendations

• Minority Research Centers can
• Improve cross-cultural research methodologies
• Institutionalize the above efforts in academic
  institutions

136
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