Academic Research Partnerships: Issues And Challenges BY Aida L. Giachello, Ph. D JACSW-Midwest Latino Health Research, Training and Policy Center University of Illinois-Chicago aida@uic. edu & Margaret Davis, RN, MSN, FNP Health Care Consortium of Illinois margaretadavis@yahoo. com Presentation at the Minority Research Training Institute, National Televedio Conference, University of North Carolina-Chapel Hill, School of Public Health, June 21, 2001.
Objectives of Presentation • To discuss some of the issues and challenges in establishing academic research partnerships with primarily community-based organizations • To stress the importance of community participatory research models and how to link research with social action • To illustrate with case studies strategies for culturallyappropriate research partnerships • To delineate strategies that will keep researchers true to the principles of public health • To share lessons learned
The Midwest Latino Health Research, Training and Policy Center JACSW-University of Illinois-Chicago & The Health Care Consortium of Illinois
UIC-Midwest Latino Health Research Center • Is a 10 year old outcome research center that focus on issues of health disparities primarily among Hispanic/Latinos and African Americans in the areas of chronic conditions and maternal and child health following a community participatory research model
UIC JACSW Midwest Latino Health Research, Training & Policy Center UIC Natioal partners: REDES EN ACCION-Cancer Network Jane Addams College of Social Work Midwest Latino Health Research, Training and Policy Center Regional Advisory Board Latino Research Network Material and Child Health Training and Mentorship Data Base Management Women Child & Fam. Welfare Health Students care Faculty Providers Chronic Conditions -5 Asthma -Diabetes -Hypertension -Cancer -Other Univ. (e. g. , -Schools of Public Health -Colleges of Nursing, ) --Hospitals & clinics; ---Churches -Other Human Services Organization Contract and Grant Development Executive Committee Research Cross Cultural Assessment & interventions National Ltino Council on alcohol & tobacco Policy & Research Dissemination -Resources Center -Scientific Lectures -Briefing Policy Papers -Directory of Latino Health Services Researchers -Annotated Bibliographies -News letters/Bulletins -Manuscripts/Publications -Coalition Building -Others Technical Assistance Community Health Education Community Based Organizations Minority Inv. Health Care Providers
December 18, 00 UIC-JACSCO MIDWEST LATINO HEALTH RESEARCH, TRAINING & POLICY CENTER Example, Current Research & Training Programs Diabetes (Multi-site studies) Cancer (Redes En Accion) Tobacco National Partners (multi-site studies Partners -Univ. of California San Fco. -Baylor College -Brooklyn Hosp. Center- NY -Univ. of Texas S. Antonio -Latinos for Healthy Ilinois -National Latino Council on Alcohol & Tobacco. (LCAT) -San Diego State University Regional Partners Wisconsin Latino Health Organization Michigan Eastern University Indiana Wishard Health Service Minesota Hispanic Network Nebraska Office of Minority Health and Human Service C: /Research Program. ppt Ohio Adelante INC Kansas Cancer Information Service Illinois Chicago Dept of Health (Hispanic Health Coalition) Illinois-Dept of Health Cancer Information Service UIC College of Medicine -Hispanic Center of Excellence - Dept of Oncology/Hematology Norwegian American Hospital’s women’s Health Center Y-Me National Breast Cancer Program
Health Care Consortium of Illinois • A coalition of community-based health and human services organizations working in the areas of maternal and child health, child welfare, asthma, diabetes and other critical community issues • Under the leadership of Salim Al. Nurridin, Executive Director, the organization started its work over 10 years ago, in the Chicago Southside communities and gradually expanding its geographical area to include the state of Illinois
Importance of Black and Brown Partnerships
US Census 2000 % % 1990 -2000 in Population Change Hispanics Blacks 35. 3 million 12. 5% 36. 4 million 12. 6% – Black only 34. 6 million – Black & 60% 20% 12. 3% Other race 1. 76 million Note: Hispanic count does not include PR or undocumented workers or census undercount
2000 Population Composition by Race/ethnicity White Black/AA Hisp/Latino Am. India/AN Asian N. Hawaiian/OPI 211. 4 million 34. 6 million 35. 3 million 2. 4 million 10. 2 million 0. 3 million % US Pop 75. 1% 12. 3% 12. 5% 0. 9% 3. 6% 0. 1%
Black and Brown Partnerships (cont) Similarities in • Socioeconomic disadvantages • Problems with accessing the health and human services systems • Health beliefs • Health disparities • Religiosity/spirituality • Community Orientation • Key in creating equity and resource distribution
HCI, Inc. , contn • HCI is an administrative service organization which brokers services it 30 member agencies • Programs activities – Healthy Start Southeast Chicago – 1000 Maternal/Child clients – Health Works • Medical Care for 25, 000 wards of the state – Senior Care • Case management for 3000 seniors
Academic & Community Research Partnerships • Formal and informal grouping of organizations and academic institution(s) coming together to achieve common goals or address common problems and where research (e. g. , assessment of needs and asset, clinical trial recruitment) is the main area of one of the main area of activity. • The partnership is complementary in nature where each partner, usually, has a unique contribution to make and/or a benefit to receive
Why Organizations want to partner with Academic Institutions? • Commitment to a particular research issue • Opportunity to have “contact”, to be in the “network”, or to gain credibility • Opportunity to obtain the latest information and technology, financial resources, jobs and training opportunities • Opportunity to complement each other, to share resources and to work in a cost-effective way • To minimize competition • There is a perceived “pay-off”. Organizations believe that there is something for them.
Why Academic Institutions want to partner with community organizations? • Opportunity to successfully apply for funding where partnerships formation is required • To reach out to the “hard-to-reach” • To make an impact in the community • To be known in the community
Benefits of the Partnerships… • • • To do better research To create training sites for the students To integrate knowledge and practice To improve the health of the community To facilitate the translation of the research findings
Partnerships… • Are not a new concept • In the 1960 s 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 1980 s partnerships developed to study and address HIV/AIDS, and other health issues
Partnerships…. • In the past year, Public Health has experienced rapid change and is refocusing on populationbased care and core functions. • Care has returned to community-level prevention and interventions • Therefore, population-based prevention research is an ideal type of research for community participation
Partnerships…. • Public health workers and researchers must knowledge and skills in: – – – – Community assessment Epidemiological analytic thinking Effective communication Community development Communication Coalition-buildings Policy and advocacy
Partnerships…. • Can be formed with public and/or private institutions and/or with community-based organizations • They can be short-term or long-term • Partnerships formation were promoted by local and federal agencies (e. g. , CDC, HRSA, USDHHS-Office of Minority Health)
Example of HRSA promoting partnerships Academic-Community Partnership Initiative • Partnerships are oriented toward the needs of the community • Major partners have equal status • Improvement of Health as a major goal
Current Practices of Research on People of Color • The research activity on people of color has not involved a careful and diligent search of available facts.
• The research on the health of people of color health traditionally has had limited or no utility in understanding or solving important health and social issues.
• Research on People of Color tends to emphasize genetic and cultural factors as solely responsible for minority poor health and ignores socioeconomic, political and environmental influences.
• Most research on people of color has not been culture or gender specific. • Most research on poor women of color has been done by researchers who belong to either the middle class and/or have a middle class mentality or framework in conducting research
• Most research on people of color have not included them as part of the research team, and when they do, they seldom are included in leadership roles
People of color are arbitrarily excluded from studies because of: • financial constraints • inconvenience to the research team • language barriers • lack of familiarity • personal preference of the investigator
• In behavioral research, the research hypotheses and overall research design tend to stress a cultural deficit model that reinforces, as a result of the findings, the victim blaming ideology
In summary, The research process has included methods of observation, criteria for validating facts and theories that intentionally or unintentionally have been designed to justify pre-conceived ideas and stereotypes of people of color, and consequently…
have reinforced in our society, traditional patterns of power, status and privilege (Hixson, 1993)
Re-Framing the Research Agenda • Rethinking research: -Research is done within a socioeconomic, historical and political framework. -We need to question the myth of “research” as inherently scientific, objective, or useful
Re-Framing the Research Agenda (cont. ) –Research can be “scientific”, but it can also be political, racist, or classicist –Unlearning old “knowledge” is as important as new learning
Re-Framing the Research Agenda (cont. ) Therefore, The research agenda is one of confronting issues of power, politics and racism – Attitudes, beliefs, and perspectives are as important or more than “knowledge”
Re-Framing the Research Agenda (cont. ) • Moving from research “on” minorities to research “with” or “by” minorities – (You can’t explain what you don’t understand) • We have to move beyond understanding the problems to solving them – (Beyond what we know -- to what we can do)
Re-Framing the Research Agenda (cont. ) • Becoming effective “consumers” of research (understanding how critical research is for policy implications) • Minority Research entities (centers) are critical for establishing and challenging legitimacy
Barriers to University and Community Partnerships Barriers associated with: • • • Academic Institutions Researchers Research Participants or Subjects Research Process Community
Barriers Related to the Academic Institution • Limited involvement in minority communities • Limited or no reward system for faculty to work with communities (tenured-track Faculty are particularly discouraged) • No economic investment in communities • Limited services to communities (e. g. , medical care, job opportunities, technical assistance)
Barriers Related to Researchers • Limited experience working with minority Communities • Limited skills and knowledge about – how to access community gate keepers – community group dynamics/politics
Barriers Related to Researchers (cont. ) • Do not see benefits of having minority investigators in research team or having community representation • Poor detailed planning in the design of minority health research • Lack cultural, gender, age & educational appropriateness in their research approach
Barriers Related to Researchers (cont. ) • They come to community when they need letters of support for grants • Partnership negotiations with communities at times are not made on an equal basis
Types of Investigators • Committed to improving the health of the community (but limited vision about empowerment and capacity-building) • Duo Personality (“Talk the Talk but don’t walk the walk”)
Typology… • “ The politically correct” Investigator (bureaucratic/and frustrated researcher. They think they are doing the right, they get burned-out, but no opportunity for promotion) • Activist researchers (committed to improving health, understand the issues and the political processes. Use research for action and social justice. )
Barriers Related to the Research Process • Limitations of data for planning and implementation on studies on People of Color • Limited research funding • Limited minority research infrastructures or centers • Poor data collection instruments
Barriers Related to the Research Process (cont. ) • Limited participation of people of color in local and national Organizations, foundations, government entities where research priorities are being developed
Barriers Related to Research Participants or Subjects • Distrustful attitude • Socio-cultural • Linguistic • Socioeconomic • Geographic • Fear of research due to history of abuses • Limited access to care • No monetary incentive
Barriers Related to Community Leaders • Lack of trust due to history of oppression, abuses and violations of individual rights (e. g. , Lack of informed consent, confidentiality) • Lack of understanding about the importance of research for public policy and program planning and implementation
Barriers Related to Community Leaders (cont. ) • Limited understanding about how universities operate and work • Community leaders have different expectations of the research partnerships
Community Expectations • Respect • Equal Partnership in terms of decisionmaking and financial resources • Technical Assistance • Job opportunities • Training • Collaboration in Publications
Main Strategy: Community Participatory Research Models “ Any research study must include the qualities of respect, honesty, and integrity. Participatory research should be the “gold standard” toward which all federally funded research aspires. ” in Building Community Partnerships, 1997 written by CDC and other federal agencies representatives.
Participatory Research Definition • Calls for the active involvement of the ordinary people in the target community in the collective assessment/investigation of their daily realities in order to transform it. • Community members bring knowledge about the culture, social norms and network, and also about the community health and how the research should be conducted.
Participatory Research (cont) Key processes: • Develop, jointly, a set of priorities and research questions • Promotes collective investigation and assessment of the problems and issues facing a community with the full and active participation of its residents • It is an educational process for both the community involved and the “researchers”
Participatory Research (cont) Key Processes: • Development of questionnaires, data collection, analyses and dissemination are through methods which are relevant and sensitive to the social and cultural context of the people • Encourages collective action aimed at both short-term and long-term solutions to the problem (international Council for Adult Education, 1993).
Participatory Research (cont) • Employs popular education • Creates consciousness-raising among community residents • This leads to a state of readiness, that can be enhanced through leadership development • Residents and providers can become effective agents of social change while building community capacity-building.
Participatory Research Models (cont. ) • Provides the opportunity to benefit the community with program and services • It institutionalizes activities in the community • It embraces personal and community empowerment as: • Philosophy • Process • outcomes
Example 1 COMMUNITY STRATEGIES TO ADDRESS ENVIRONMENTAL RISKS: THE BLUE ISLAND EXPERIENCE Giachello, Rodriguez & Zayad. From Data to Social Action: A community- University Partnership in Environmental Justice. M. Sullivan (editor). Forthcoming Publication-APHA Book.
The Blue Island Experience (2) • The Good Neighbor Committee (TGNC), was formed in 1996 • TGNC, is a non-profit community organization that advocate on behalf of the health and social needs of the community • Environmental Justice is one of their main goals.
The Blue Island Experience (3) • In 1940 the Clark Oil Refinery was established in this area, serving as the major employer to Blue Island surrounding communities • On October 21, 1997, an explosion occurred at the Clark Oil Plant. This raised public concerns about safety issues. • Community residents began complaining in large scale of symptoms of illnesses, particularly respiratory problems such as asthma.
Blue Island Experience (4) • Representatives of The Good Neighbor Committee approached the UIC-Midwest Latino Health Research, Training & Policy Center • They heard about the work of the UIC Latino Health Research Center in the area of asthma through the media
Blue Island, Illinois PARTICIPATORY RESEARCH & COMMUNITY ORGANIZING MODEL 1. Partnership Process Formation A c t i v i t i e s Orientation Strengthening 2. Community Dialogue Problem Definition Community involvement 3. Capacity. Building (Training) -Air Pollution -Asthma Research methods 4. Assessment & Data Collection Face-to. Face Household Other Research Methods 5. Community Organizing Implementation Action Plan Community Forums Working Groups Policy Community Education Training Others 6. Development & Other committees Resource development
The Blue Island Experience (6) In partnerships with Blue Island community representatives, the UIC Latino Health Research, Training and Policy Center assisted in conducting a community needs assessment. Specifically, we – Assisted in the development of a survey questionnaire – We Trained and worked closely with community volunteers as interviewers or data collectors.
The Blue Island Experience (7) • Providing assistance in data entry and analyses • Assisting in the development & implementation of an action plan
The Blue Island Experience (8) The Action Plan consisted of: • community awareness and education about asthma and other respiratory conditions • town meetings and forums • Effective use of the media
The Blue Island Experience (9) Community Needs Assessment Objectives: • To document community symptoms and selected illnesses and their relationship with environmental pollution. • To explore which geographical areas in the target communities were most affected.
The Blue Island Experience (10) Method: • 500 face-to-face household interviews were conducted based on a convenience sample. • Information was collected on a total of 1106 persons. • Data was collected between October & December, 1997.
The Blue Island Experience (11) Selected Findings: • 68% of the residents of Blue Island reported illnesses and symptoms of illnesses • Illnesses & symptoms of illnesses vary by census track. • The percentage of illnesses related to environmental pollution vary from 38. 9% to 79. 9% in some areas.
The Blue Island Experience (12) Table I Number of Symptoms & Illnesses by Census Track and by Percentage of Total Respondents Track # Total # respondents Track 1 Track 2 Track 3 Track 4 Track 5 Track 6 Track 7 Track 8 181 81 249 123 116 107 95 154 Total reported symptoms/illnesses 121 38 199 79 73 73 37 67 % of total illnesses 66. 9% 46. 9% 79. 9% 64. 4% 62. 9% 68. 2% 38. 9% 43. 5%
The Blue Island Experience (13) Symptoms of illnesses most often reported: • • • headaches Respiratory problems Eye Irritation Nausea “flu like” 37. 0% 24. 5% 20. 9% 19. 8% 8. 4% (409) (271) (231) (219) ( 93)
The Blue Island Experience (14) Study Conclusions: • Those residents living downwind of the Clark Oil Refinery were most likely to report symptoms of illnesses.
The Blue Island Experience (15) • The closer in proximity respondents resided to the Clark Refinery, the more prevalence were the illnesses & symptoms. • There was a positive correlation between respondents years of residents in the community and the severity of their symptoms.
The Blue Island Experience (16 ) From data to Action: • Press Conference • Town meetings and community forums
The Blue Island Experience (17) From Data to Action (cont): • Building community coalitions: church groups, PTAs, etc. • Organizing the community into working committees through The Good Neighbor Committee • Using the media for agenda setting • Getting the attention & engaging in negotiations with the Illinois and the Federal Environmental Protection Agencies
The Blue Island Experience (18) • • Challenges Encountered By Residents Fear of lost of jobs if plant close down Fear of diminished property value Fear of increased taxes Fear of loosing refinery support in sponsoring community events.
EXAMPLE 2 The Chicago Southeast Diabetes Community Action Coalition (CSe. DCAC)
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
CSe. DCAC: Target Areas • Action Planning area included 6 communities in Chicago South east – South shore – South Chicago – South Deering – East Side – Calumet Heights – Hegewisch
CSe. DCAC: 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.
CSe. DCAC: 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.
CSe. DCAC: 1980 s 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)
CSe. DCAC: 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
CSe. DCAC: 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
CSe. DCAC: 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)
CSe. DCAC: Mission Statement “To assure and enhance access to quality health services and quality of life of persons at risk and with diabetes in the Chicago Southeast communities through the establishment and institutionalization of a diabetes coalition of community residents, health and human services providers, and persons living with diabetes, that will engage in community approaches to reduce diabetes and its consequences”
CHICAGO SOUTHEAST DIABETES COMMUNITY ACTION COALITION PARTICIPATORY RESEARCH & COMMUNITY ORGANIZING MODEL REACH 2010 1. Coalition Process Formation A c t i v i t i e s Orientation Expansion Strengthening 2. Capacity Building (Training) Diabetes Today Research Methods Ex. Focus Groups Others 3. Data Collection Focus Groups Telephone Survey Community Leaders Hlth providers FGs & Survey Community Assets/Inv Secondary data analyses , ex. - vital Statistics - hospital data- 4. 5. 6. Implemen. Community Action Plan tation of Organizing Action Plan Community Values Forums Goals/ Objectives Working Groups Strategies Policy Training Comm. Educ. Prov. Training Strengths & Limitations Resources Needed Work plans Evaluation Resource development
CSe. DCAC: 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
CSe. DCAC: 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)
CSe. DCAC: 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
CSe. DCAC: 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
CSe. DCAC: Committees Tasks (cont) – – Diabetes Risk Assessment Qx Telephone Survey Community inventory Health care providers surveys • Planning and Implementation of committee assessment activities(logistically speaking) • Analyses and interpretation of data • Planning and implementing community forums and town meetings activities, and other dissemination activities (e. g. , APHA presentation) • Evaluation
1 - 2% 5% LIVING WITH DIABETES 3. 4% Diabetes with complication and disability -Poor quality of care -Poor adherence Barriers UNDIAGNOSED DIABETES -People don’t want diagnosis -No access medical care -No preventive care -Limited awareness POPULATION AT RISK FOR DEVELOPING DIABETES POPULATION WITH NO KNOWN RISK FOR DIABETES Genetic; Race/ethnicity lack of exercise Diet; Obesity; Hypertension Gestational DM Birth weight > 9 lbs; Age > 45 years Giachello & Arrom Model (1999)
CSe. DCAC: 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
CSe. DCAC: 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)
Disparities in Lifestyle
Disparities in Risk Factors
CSe. DCAC: 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 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)
CSe. DCAC: Disparities in the Impact of Diabetes
CSe. DCAC: 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
CSe. DCAC: High Prevalence of Diabetes Risk Factors in the Southeast Chicago Community • Low testing for hgb A 1 c (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
CSe. DCAC 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
CSe. DCAC: 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 C Assess the conditions and issues that call for a coalition and/or partnerships
Strategies (cont) • Assess and use existing networks and structures in placed, instead of establishing new ones • Coalitions must be representative of all critical sectors (e. g. , Depts of health, church groups, neighborhood health facilities and hospitals, managed-care organizations, schools, etc. ) • Be careful in the selection of members process
Selection of Partners: Potential Criteria • Who is affected by the problem • Who will benefit by the coalition/partnership actions • Who has worked on this problem before, or have knowledge and/or expertise • What are the resources that each potential member has to offer to the coalition/partnership • What are the credibility of individuals and organizations being considered as coalition members
Selection of Partnership: Things to avoid • Don’t invite people who don’t like you or who don’t work well with you, or who question your organization involvement • Don’t invite people who don’t get along among themselves • Have strategies for people who don’t like you or don’t like each other (eg. , memorandum of agreement, remind them of the benefits, etc) • Once the partnership coalition is formed or during the process of formation, issues of governance needs to be addressed depending of membership size
Strategies (cont) • Establish decision-making structure and framework (decision- making power) • Establish membership criteria and type: individual and/or organization • Establish rules and regulations (e. g. , by-laws) • Establish process for larger membership participation in program and policy decisions
Strategies (cont) • Have clear discussions about membership benefits and services • Have clear discussions about situations in which the partnership or coalition might be in competition with member organizations for public or private grants and contracts
Tasks to Maintain The Partnership or Coalition Once It Has Been Formed 1. Dealing effectively with group dynamics 2. Managing the environment 3. Fulfilling research and other contract commitment
Inner Group Challenges • Maintain good relations through building trust and group cohesiveness – Members must set aside their egos for control and for visibility • Establish good line of communication Communication must be – Honest – clear – With good listening skills
Group Dynamics (cont) • • Establish group goals Set clear rules and regulations Set membership requirements Establish written memorandum of agreements/understanding • Have regular meetings with substantive agendas • Identify and define the roles of Principal Investigator(s), project staff and partners • Develop decision-making framework and process
Group Dynamics (cont) • Define the term community • Define “community leader(s)” Qualities of good leaders. credibility honesty respect for others respect for group process flexible fair adapt behaviors according to occasions
Group Dynamics (cont) – facilitate group process – bring people together – Is/are task-oriented and emotional-oriented person Is important to let the person with most ability to lead
Group Dynamics (cont) Indications that the group process and dynamics are fine: • Members in the meetings are happy and smiling, they are making jokes • Members care for each other. They ask about the wellbeing of members and their families • Members attend regular meetings and to commit to tasks • Meetings are productive in terms of substance, are shorter and, runs smoothly • There is high group morale and respect • Group work gets done
When There is problems with the partnership • There is distrustfulness (particularly around leadership and use of funds) • There is group tension • Some members will try to manipulate activities and group processes behind the scene • Meetings are tense, long and very little is accomplished or decided
Problems with Partnerships • Researchers may feel a great need to control the group process and may not trust community representatives’ capability of learning or doing the tasks assigned to them well • Community representative tend to be more “relational-oriented” • At times there might be social distance between researchers and community: issues of “they” versus “us”
Problems with Research Partnership (cont. ) • Researchers assume the role of “experts”, they “know it all” because of technical knowledge • At times, researchers do not value the contribution of minority investigators or community workers
Other Problems Related to Participatory Research • Process is too slow • Funding sources do not want to approve equitable allocation of funding to community partners • It not yet well accepted by the “scientific community”
Tasks relate to the Environment C Engage in social marketing of research activities and services of the partnership/coalition C Assess partnership membership and expand membership, if necessary C Avoid duplication of services with those who choose not to be part of your group
Activities related to the Environment • Be supportive and sensitive to other partnerships/coalitions • Establish credibility and integrity • Promote the important group activities being conducted on behalf of the community
Conclusions • It is essential to examine how the research on the health of people of color is being done. Who does it, who benefits from it and who it serves • Working in collaboration is hard work and is a slower process
Conclusions… • The researchers and the health workers and community representatives must refine or develop: – Facilitation skills – Community organizing and coalitionbuilding skills – Communication & negotiation skills – Leadership development skills
Conclusions (cont. ) • Many so called research partnerships do not truly involved the community (e. g, residents or grass roots organizations meaningfully) • Many so called leaders of HSO’s are only interested in what is there for them (in terms of funding), and do not have true commitment to improving the health of the community
Conclusions • The group dynamics can be quite difficult if the researchers are not prepared.
Recommendations 1. Funding sources must provide sufficient funding to support collaborative work during the demonstration projects, and continued TA after the grant funding ends “sustainability is necessary if successful research is to to be translated into programs and lasting benefits to the community” in Building Comm. Partnerships (1997) 2. Building community and university partnerships require universities to invest in neighborhoods and in communities of color in a more comprehensive fashion
Recommendations…. 3. To correct the limitations in conducting research on people of color we need to: A) Train more investigators into community action research B) Encourage more minorities to get into health professions and to complete their HH, BA/BS, Ph. Ds 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
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