Academic Research Partnerships: Issues And Challenges

1. Academic Research Partnerships: Issues And Challenges BY Aida L. Giachello, PhD JACSW-Midwest Latino Health Research, Training and Policy Center University of Illinois-Chicago aida@uic.edu & Margaret Davis, RN Health Care Consortium of Illinois Margaretadavis@yahoo.com Presentation at the Minority Research Training Institute national televideo conference, University of North Caroloina-Chapel Hill, School of Public Health, June 21,2001.

2. Objectives of Presentation • To discuss some of the issues and challenges in establishing academic research partnerships with primarily community-based organizations • To stress the importance of community participatory research models and how to link research with social action • To illustrate with case studies strategies for culturally-appropriate research partnerships • To share lessons learned

3. The UIC-Midwest Latino Health Research, Training and Policy Center & the Health Care Consortium of Illinois?

4. UIC-Latino Research Center • Is a 10 year old outcome research center that focus on issues of health disparities primarily among Hispanic/Latinos and African Americans in the areas of chronic conditions and maternal and child health following a community participatory research model

5. UIC JACSW Midwest Latino Health Research, Training & Policy Center UIC Natioal partners: REDES EN ACCION-Cancer Network National Ltino Council on alcohol & tobacco Univ. (e.g.,-Schools of Public Health -Colleges of Nursing,) --Hospitals & clinics; ---Churches -Other Human Services Organization Jane Addams College of Social Work Midwest Latino Health Research, Training and Policy Center Regional Advisory Board 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 -Asthma -Diabetes -Hypertension -Cancer -Other Women Child & Fam. Welfare Material and Child Health Minority Inv. Health Care Providers

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

7. Health Care Consortium of Illinois • A coalition of community-based health and human services organizations working in the areas of maternal and child health, child welfare, asthma, diabetes and other critical community issues • The organization started its work over 10 years ago, in the Chicago Southeast communities and gradually expanding its geographical area to include the state of Illinois

8. 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

9. 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.

10. 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 • To do better behavioral research

11. Partnerships… • Are not a new concept • 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 later on in the 1980s, to address other health issues

12. 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)

13. Why partnerships with minority organizations are important? • The research activity on people of color has not involved a careful and diligent search of available facts.

14. The research on minority health traditionally has had limited or no utility in understanding or solving important health and social issues.

15. Research on minority health tends to emphasize genetic and cultural factors as solely responsible for minority poor health and ignores socioeconomic, political and environmental influences.

16. Most research on minorities 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.

17. Most research on minorities have not included them as part of the research team, and when they do, they seldom are included in leadership roles

18. 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

19. 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

20. 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…

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

22. 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

23. 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

24. 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 (or more) important than “knowledge”

25. 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)

26. 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

27. Barriers to University and Community Partnerships Barriers associated with: • Academic Institutions • Researchers • Research Participants or Subjects • Research Process • Community

28. 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)

29. 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

30. 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

31. 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

32. Distrustful attitude Socio-cultural Linguistic Socioeconomic Geographic barriers Fear of research due to history of abuses Limited access to care No monetary incentive Barriers Related to Research Participants or Subjects

33. 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

34. 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

35. 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

36. Barriers Related to Community Leaders (cont.) • Limited understanding about how universities operate and work • Community leaders have different expectations of the research partnerships

37. Community Expectations • Respect • Equal Partnership in terms of decision-making and equal partnership • Technical Assistance • Job Opportunities • Training • Collaboration in Publications

38. Main Strategy: Community Participatory Research Models

39. Participatory Research Definition • Calls for the active involvement of the ordinary people in the target community in the collective assessment/investigation of the realities related to persons at risks of developing diabetes or living with diabetes in order to transform it.

40. Participatory Research (cont) Key processes: • 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”

41. 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).

42. Participatory Research (cont) • 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.

43. 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

44. Example 1 COMMUNITY STRATEGIES TO ADDRESS ENVIRONMENTAL RISKS: THE BLUE ISLAND EXPERIENCE

45. 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.

46. The Blue Island Experience (3) • In 1940 the Clark Oil Refinery was established in this area, serving as the major employer to Blue Island and surrounding communities • On October 21, 1997, an explosion occurred at the Clark Oil Plant. This raised public concerns about safety issues. • Community residents began complaining in large scale of symptoms of illnesses, particularly respiratory problems such as asthma.

47. 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

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

49. The Blue Island Experience (6) In partnerships with Blue Island community representatives, the UIC Latino Latino Health Research, Training and Policy Center assisted in conducting a community needs assessment. Specifically, we • Assisted in the development of a survey questionnaire • We Trained and worked closely with community volunteers as interviewers or data collectors.

50. The Blue Island Experience (7) • Providing assistance in data entry and analyses • Assisting in the development & implementation of an action plan