academic research partnerships: issues and challenges by aida l. giachello, phd jacsw-midwest latino...

Academic Research Partnerships: Issues And Challenges

BYAida L. Giachello, PhD

JACSW-Midwest Latino Health Research, Training and Policy Center

University of [email protected]

&

Margaret Davis, RN, MSN, FNPHealth Care Consortium of Illinois

[email protected] 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 culturally-appropriate 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

Jane AddamsCollege of

Social Work

Regional Advisory Board

Midwest Latino Health Research, Training

and Policy Center

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

Executive CommitteeContract and Grant

Development

Policy & ResearchDissemination

Technical AssistanceTraining and Mentorship

Research

Healthcare

ProvidersStudents FacultyData Base

Management

Materialand Child

Health

Chronic Conditions-5Asthma -Diabetes -Hypertension -Cancer

-Other

Latino ResearchNetwork

CommunityHealth

Education

CommunityBased

Organizations

MinorityInv.

HealthCare

Providers

Cross CulturalAssessment

& interventions

WomenChild &

Fam. Welfare

-Resources Center -Scientific Lectures -Briefing Policy Papers

-Directory of Latino Health Services Researchers

-Annotated Bibliographies -News letters/Bulletins -Manuscripts/Publications-Coalition Building -Others

UIC JACSW 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

-Univ. of California San Fco.-Baylor College-Brooklyn Hosp. Center- NY-Univ. of Texas S. Antonio-San Diego State University

Partners

-Latinos for Healthy Ilinois-National Latino Council on Alcohol & Tobacco. (LCAT)

Regional Partners

Minesota HispanicNetwork

Illinois Michigan

EasternUniversity

Wisconsin LatinoHealth Organization

IndianaWishard Health

Service

Nebraska Office of MinorityHealth and Human

Service

Ohio AdelanteINC

Norwegian AmericanHospital’s women’s

Health Center

Illinois-Dept of HealthCancer Information

Service

Kansas Cancer

InformationService

Chicago Dept of Health

(Hispanic Health Coalition)

Y-Me National Breast Cancer

Program

UIC College of Medicine-Hispanic Center of Excellence- Dept of Oncology/Hematology

UIC-JACSCO MIDWEST LATINO HEALTH RESEARCH,TRAINING & POLICY CENTER December 18,00

C:/Research Program.ppt

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 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

% 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)

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 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

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


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”


• 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)


• 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

• Limited participation of people of color in local and national Organizations, foundations, government entities where research priorities are being developed

Barriers Related to the Research Process (cont.)

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 decision-

making 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.


• 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, IllinoisPARTICIPATORY RESEARCH & COMMUNITY ORGANIZING MODEL

Process

Activities

1. Partnership Formation

2.Community

Dialogue

3. Capacity- Building

(Training)

4.Assessment

& DataCollection

5. Community

Organizing

6. Development &Implemen-

tation

Action Plan

Orientation

Strengthening

ProblemDefinition

Communityinvolvement

-AirPollution-Asthma

Face-to-Face

Household

OtherResearchMethods

CommunityForums

Working Groups

Policy

Community Education

Training

Other committees

Resourcedevelopment

Research methods

Others


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.


• Providing assistance in data entry and analyses

• Assisting in the development & implementation of an action plan


The Action Plan consisted of:

• community awareness and education about asthma and other respiratory conditions

• town meetings and forums

• Effective use of the media


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.


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.


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.


Table INumber of Symptoms & Illnesses by Census Track and by Percentage

of Total RespondentsTrack # Total # Total % of total

respondents reported illnessessymptoms/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%


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)


Study Conclusions:

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


• 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


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


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 COALITIONPARTICIPATORY RESEARCH & COMMUNITY ORGANIZING MODEL

REACH 2010

Process

Activities

1. Coalition

Formation

2.CapacityBuilding

(Training)

3. Data

Collection

4.Community Organizing

5. Action Plan

6. Implemen-tation of

Action Plan

Orientation

Expansion

Strengthening

DiabetesToday

Research Methods

Secondary data analyses , ex.- vital Statistics- hospital data-

Focus Groups

Telephone Survey

Hlth providers FGs & Survey

Community Assets/Inv

Community

Forums

Working Groups

Policy Training

Comm. Educ. Prov. Training

Values

Goals/Objectives

Strategies

Strengths & Limitations

Resources Needed

Work plans

Evaluation

Resourcedevelopment

Community Leaders

Ex. FocusGroups

Others

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

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%

Diabetes with complication and disability

-Poor quality of care-Poor adherenceBarriers

LIVING WITHDIABETES

3.4%UNDIAGNOSED

DIABETES

POPULATION AT RISKFOR DEVELOPING DIABETES

POPULATION WITH NO KNOWNRISK FOR DIABETES

-People don’t want diagnosis-No access medical care-No preventive care-Limited awareness

Genetic; Race/ethnicity lack of exerciseDiet; Obesity;HypertensionGestational DMBirth weight > 9 lbs;Age > 45 years

Giachello & ArromModel (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)

DIABETES MORTALITY BY SELECTED SOUTHSIDE COMMUNITIES 1994-1996

1924

26 25

32

1821

051015

20253035

Ra

te p

er

10

0,0

00

Disparities in Lifestyle

0

10

20

30

40

50

60

70

Physicalinactivity

Activity program Ever smoked Control diet/pastyr

BlackWhiteHispanic

Disparities in Risk Factors

0

5

10

15

20

25

30

35

Mean BMI Eat outsidehome (#/wk)

Heart disease Hypertension Highcholesterol

BlackWhiteLatino

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

0

10

20

30

40

50

60

African-Amer

NH Whites Hispanics

Hospitalized/past yrUnable to workFair-poor health status

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

• 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


• Define the term community • Define “community leader(s)”

Qualities of good leaders.credibilityhonestyrespect for othersrespect for group processflexiblefairadapt behaviors according to occasions


– 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


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

• 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 coalition-building 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

academic research partnerships: issues and challenges by aida l. giachello, phd jacsw-midwest latino...

Documents

health center illinoisdept

issues of health disparities

school of public health

principles of public

academic research partnerships

training policy center

policy center jacswuniversity

policy center natioal