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Academic Research Partnerships: Issues And Challenges. BY Aida L. Giachello, PhD JACSW-Midwest Latino Health Research, Training and Policy Center University of Illinois-Chicago a ida@uic .edu & Margaret Davis, RN, MSN, FNP Health Care Consortium of Illinois margaretadavis@yahoo.com

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Academic research partnerships issues and challenges
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
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


Academic research partnerships issues and challenges

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
UIC-Midwest Latino Health Research Center 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


Academic research partnerships issues and challenges

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

Latino Research

Network

Contract and Grant

Development

Executive Committee

Training and

Mentorship

Policy & Research

Dissemination

Research

Technical Assistance

Cross Cultural

Assessment

& interventions

Students

Health

care

Providers

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


Academic research partnerships issues and challenges

December 18,00 Center

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

Illinois

Indiana

Wishard Health

Service

Minesota Hispanic

Network

Chicago

Dept of Health

(Hispanic Health

Coalition)

Illinois-Dept of Health

Cancer Information

Service

Norwegian American

Hospital’s women’s

Health Center

Nebraska

Office of Minority

Health and Human

Service

Ohio Adelante

INC

UIC College of Medicine

-Hispanic Center of Excellence

- Dept of Oncology/Hematology

Y-Me National

Breast Cancer

Program

Kansas

Cancer

Information

Service

C:/Research Program.ppt


Health care consortium of illinois
Health Care Consortium of Illinois Center

  • 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



Us census 2000
US Census 2000 Center

% % 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


2000 population composition by race ethnicity
2000 Population Composition by Race/ethnicity Center

% 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%


Black and brown partnerships cont
Black and Brown Partnerships (cont) Center

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, Inc., contn Center

  • 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
Academic & Community Research Partnerships Center

  • 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
Why Organizations want to partner with Academic Institutions Center?

  • 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
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
Benefits of the Partnerships… organizations?

  • 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
Partnerships… organizations?

  • 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


Partnerships1
Partnerships…. organizations?

  • 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


Partnerships2
Partnerships…. organizations?

  • 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


Partnerships3
Partnerships…. organizations?

  • 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
Example of HRSA promoting partnerships organizations?

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
Current Practices of Research on People of Color organizations?

  • The research activity on people of color has not involved a careful and diligent search of available facts.


Academic research partnerships issues and challenges


Academic research partnerships issues and challenges


Academic research partnerships issues and challenges


Academic research partnerships issues and challenges


People of color are arbitrarily excluded from studies because of
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


Academic research partnerships issues and challenges


Academic research partnerships issues and challenges

In summary, research design tend to stress a cultural deficit model that reinforces, as a result of the findings, the victim blaming ideologyThe 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…


Academic research partnerships issues and challenges

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


Re framing the research agenda
Re-Framing the Research Agenda power, status and privilege (Hixson, 1993)

  • 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
Re-Framing the Research Agenda power, status and privilege (Hixson, 1993) (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 cont1
Re-Framing the Research Agenda power, status and privilege (Hixson, 1993) (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 cont2
Re-Framing the Research Agenda power, status and privilege (Hixson, 1993) (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 cont3
Re-Framing the Research Agenda power, status and privilege (Hixson, 1993) (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 to University and Community Partnerships power, status and privilege (Hixson, 1993)

Barriers associated with:

  • Academic Institutions

  • Researchers

  • Research Participants or Subjects

  • Research Process

  • Community


Barriers related to the academic institution
Barriers Related to the Academic Institution power, status and privilege (Hixson, 1993)

  • 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
Barriers Related to Researchers power, status and privilege (Hixson, 1993)

  • 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
Barriers Related to Researchers power, status and privilege (Hixson, 1993) (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 cont1
Barriers Related to Researchers power, status and privilege (Hixson, 1993) (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
Types of Investigators power, status and privilege (Hixson, 1993)

  • 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
Typology… power, status and privilege (Hixson, 1993)

  • “ 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
Barriers Related to the Research Process power, status and privilege (Hixson, 1993)

  • 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
Barriers Related to the Research Process power, status and privilege (Hixson, 1993) (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 power, status and privilege (Hixson, 1993)

Socio-cultural

Linguistic

Socioeconomic

Geographic

Fear of research due to history of abuses

Limited access to care

No monetary incentive

Barriers Related to Research Participants or Subjects


Barriers related to community leaders
Barriers Related to Community Leaders power, status and privilege (Hixson, 1993)

  • 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
Barriers Related to Community Leaders power, status and privilege (Hixson, 1993) (cont.)

  • Limited understanding about how universities operate and work

  • Community leaders have different expectations of the research partnerships


Community expectations
Community Expectations power, status and privilege (Hixson, 1993)

  • Respect

  • Equal Partnership in terms of decision-making and financial resources

  • Technical Assistance

  • Job opportunities

  • Training

  • Collaboration in Publications


Main strategy
Main Strategy power, status and privilege (Hixson, 1993):

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
Participatory Research power, status and privilege (Hixson, 1993)

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
Participatory Research (cont) power, status and privilege (Hixson, 1993)

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 cont1
Participatory Research (cont) power, status and privilege (Hixson, 1993)

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 cont2
Participatory Research power, status and privilege (Hixson, 1993) (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
Participatory Research Models power, status and privilege (Hixson, 1993) (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
Example 1 power, status and privilege (Hixson, 1993)

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 Blue Island Experience power, status and privilege (Hixson, 1993) (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
The Blue Island Experience power, status and privilege (Hixson, 1993) (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
Blue Island Experience power, status and privilege (Hixson, 1993) (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


Academic research partnerships issues and challenges

Blue Island, Illinois power, status and privilege (Hixson, 1993)

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


The blue island experience 6
The Blue Island Experience power, status and privilege (Hixson, 1993) (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
The Blue Island Experience power, status and privilege (Hixson, 1993) (7)

  • Providing assistance in data entry and analyses

  • Assisting in the development & implementation of an action plan


The blue island experience 8
The Blue Island Experience power, status and privilege (Hixson, 1993) (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
The Blue Island Experience power, status and privilege (Hixson, 1993) (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
The Blue Island Experience power, status and privilege (Hixson, 1993) (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
The Blue Island Experience power, status and privilege (Hixson, 1993) (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
The Blue Island Experience power, status and privilege (Hixson, 1993) (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%


The blue island experience 13
The Blue Island Experience power, status and privilege (Hixson, 1993) (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)


The blue island experience 14
The Blue Island Experience power, status and privilege (Hixson, 1993) (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 Blue Island Experience power, status and privilege (Hixson, 1993) (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
The Blue Island Experience power, status and privilege (Hixson, 1993)(16 )

From data to Action:

  • Press Conference

  • Town meetings and community forums


The blue island experience 17 from data to action cont
The Blue Island Experience power, status and privilege (Hixson, 1993) (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
The Blue Island Experience power, status and privilege (Hixson, 1993) (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
EXAMPLE 2 power, status and privilege (Hixson, 1993)

The Chicago Southeast Diabetes Community Action Coalition

(CSeDCAC)


Reach 2010
REACH 2010 power, status and privilege (Hixson, 1993)

  • 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
Facts about Diabetes power, status and privilege (Hixson, 1993)

  • 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
Diabetes is a Costly Disease power, status and privilege (Hixson, 1993)

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: power, status and privilege (Hixson, 1993)

Genetic or hereditary

Ethnicity (being Latino)

Age

Gender

Modifiable

Physical exercise

Diet

Weight control

Others (smoking, drinking)

Environment

Risks Factors for Diabetes


System that can be impacted through research partnerhip
System that can be Impacted through Research partnerhip power, status and privilege (Hixson, 1993)

Ecological Model

The Individual

The Family

The Community/Neighborhood

Health Care Delivery System

Other Macro System


Chicago southeast diabetes community action coalition
Chicago power, status and privilege (Hixson, 1993)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
CSeDCAC: Target Areas power, status and privilege (Hixson, 1993)

  • 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
CSeDCAC:The History of Southeast Side power, status and privilege (Hixson, 1993)

  • 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
CSeDCAC: The History (cont) power, status and privilege (Hixson, 1993)

  • 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
CSeDCAC: 1980s Decline of Industry power, status and privilege (Hixson, 1993)& 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
CSeDCAC: Community Description power, status and privilege (Hixson, 1993)

  • 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
CSeDCAC: Example of Principles power, status and privilege (Hixson, 1993)

  • 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
CSeDCAC: Principles power, status and privilege (Hixson, 1993) (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
CSeDCAC: Mission Statement power, status and privilege (Hixson, 1993)

“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”


Academic research partnerships issues and challenges

CHICAGO SOUTHEAST DIABETES COMMUNITY ACTION COALITION power, status and privilege (Hixson, 1993)

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

Others

Work plans

Secondary data

analyses , ex.

- vital Statistics

- hospital data-

Evaluation


Csedcac training and capacity building
CSeDCAC: Training and Capacity-Building power, status and privilege (Hixson, 1993)

  • 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
CSeDCAC: power, status and privilege (Hixson, 1993) 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
CSeDCAC: Working Committees power, status and privilege (Hixson, 1993)

  • 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
CSeDCAC: Committees Tasks power, status and privilege (Hixson, 1993)

  • 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
CSeDCAC: Committees Tasks power, status and privilege (Hixson, 1993) (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


  • Academic research partnerships issues and challenges

    1 - 2% power, status and privilege (Hixson, 1993)

    Diabetes with complication

    and disability

    5%

    -Poor quality of care

    -Poor adherence

    Barriers

    LIVING WITH

    DIABETES

    -People don’t want diagnosis

    -No access medical care

    -No preventive care

    -Limited awareness

    UNDIAGNOSED

    DIABETES

    3.4%

    Genetic; Race/ethnicity

    lack of exercise

    Diet; Obesity;Hypertension

    Gestational DM

    Birth weight > 9 lbs;

    Age > 45 years

    POPULATION AT RISK

    FOR DEVELOPING DIABETES

    POPULATION WITH NO KNOWN

    RISK FOR DIABETES

    Giachello & Arrom

    Model (1999)


    Csedcac survey design
    CSeDCAC:Survey Design power, status and privilege (Hixson, 1993)

    • 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
    CSeDCAC: Focus Groups and Town Meetings power, status and privilege (Hixson, 1993)

    • 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)


    Disparities in lifestyle
    Disparities in Lifestyle power, status and privilege (Hixson, 1993)


    Disparities in risk factors
    Disparities in Risk Factors power, status and privilege (Hixson, 1993)


    Csedcac selected health disparities
    CSeDCAC:Selected Health Disparities power, status and privilege (Hixson, 1993)

    • 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
    CSeDCAC: Disparities in the power, status and privilege (Hixson, 1993)Impact of Diabetes


    Csedcac high prevalence of diabetes risk factors in the southeast chicago community
    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 community1
    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
    Action Plan Southeast Chicago Community

    • Capacity building:

    • Improving Quality of Care

    • Patient Education

    • Community awareness and education


    Csedcac group processes key to success
    CSeDCAC Group Processes:key to success Southeast Chicago Community

    • 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
    CSeDCAC: Group Dynamics Southeast Chicago Community (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
    Issues And Lessons Learned Southeast Chicago Community

    • There is no single best way of organizing communities, particularly poor communities and community of color

      Main Strategies

    • Building Trust

    • Distribution of Resources


    Strategies
    Strategies Southeast Chicago Community

    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
    Strategies Southeast Chicago Community (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
    Selection of Partners: Potential Criteria Southeast Chicago Community

    • 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
    Selection of Partnership: Southeast Chicago CommunityThings 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 cont1
    Strategies Southeast Chicago Community (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 cont2
    Strategies Southeast Chicago Community (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
    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


    Inner group challenges
    Inner Group Challenges Been Formed

    • 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
    Group Dynamics Been Formed (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 cont1
    Group Dynamics Been Formed (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 cont2
    Group Dynamics Been Formed (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 cont3
    Group Dynamics Been Formed (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


    When there is problems with the partnership
    When There is problems with the partnership Been Formed

    • 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
    Problems with Partnerships Been Formed

    • 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
    Problems with Research Partnership Been Formed (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
    Other Problems Related to Participatory Research Been Formed

    • 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
    Tasks relate to the Environment Been Formed

    • 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
    Activities related to the Environment Been Formed

    • 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
    Conclusions Been Formed

    • 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


    Conclusions1
    Conclusions… Been Formed

    • 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


    Conclusions cont
    Conclusions Been Formed (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


    Conclusions2
    Conclusions Been Formed

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


    Recommendations
    Recommendations Been Formed

    • 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


    Recommendations1
    Recommendations…. Been Formed

    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


    Recommendations2
    Recommendations…. Been Formed

    • 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


    Recommendations3
    Recommendations….. Been Formed

    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)


    Recommendations4
    Recommendations….. Been Formed

    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


    Recommendations5
    Recommendations Been Formed

    Minority Research Centers can…

    • Improve cross-cultural research methodologies

    • Institutionalize the above efforts in academic institutions


    Recommendations6
    Recommendations…. Been Formed

    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