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, 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.

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

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

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

5. UIC JACSW Midwest Latino Health Research, Training & Policy Center UIC Natioal partners: REDES EN ACCION-Cancer Network National Ltino Council on alcohol & tobacco Univ. (e.g.,-Schools of Public Health -Colleges of Nursing,) --Hospitals & clinics; ---Churches -Other Human Services Organization Jane Addams College of Social Work Midwest Latino Health Research, Training and Policy Center Regional Advisory Board Latino Research Network Contract and Grant Development Executive Committee Training and Mentorship Policy & Research Dissemination Research Technical Assistance Cross Cultural Assessment & interventions Students Health care Providers Faculty Community Health Education Data Base Management -Resources Center -Scientific Lectures -Briefing Policy Papers -Directory of Latino Health Services Researchers -Annotated Bibliographies -News letters/Bulletins -Manuscripts/Publications -Coalition Building -Others Community Based Organizations Chronic Conditions -5Asthma -Diabetes -Hypertension -Cancer -Other Women Child & Fam. Welfare Material and Child Health Minority Inv. Health Care Providers

6. December 18,00 UIC-JACSCO MIDWEST LATINO HEALTH RESEARCH,TRAINING & POLICY CENTER Example, Current Research & Training Programs Diabetes (Multi-site studies) Cancer (Redes En Accion) Tobacco National Partners (multi-site studies Partners • Univ. of California San Fco. • Baylor College • Brooklyn Hosp. Center- NY • Univ. of Texas S. Antonio • -San Diego State University • Latinos for Healthy Ilinois • National Latino Council on Alcohol & • Tobacco. (LCAT) Regional Partners 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 • Under the leadership of Salim AlNurridin, Executive Director, the organization started its work over 10 years ago, in the Chicago Southside communities and gradually expanding its geographical area to include the state of Illinois

8. Importance of Black and Brown Partnerships

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

10. 2000 Population Composition by Race/ethnicity % US Pop White 211.4 million 75.1% Black/AA 34.6 million 12.3% Hisp/Latino 35.3 million 12.5% Am. India/AN 2.4 million 0.9% Asian 10.2 million 3.6% N. Hawaiian/OPI 0.3 million 0.1%

11. Black and Brown Partnerships (cont) Similarities in • Socioeconomic disadvantages • Problems with accessing the health and human services systems • Health beliefs • Health disparities • Religiosity/spirituality • Community Orientation • Key in creating equity and resource distribution

12. HCI, Inc., contn • HCI is an administrative service organization which brokers services it 30 member agencies • Programs activities • Healthy Start Southeast Chicago • 1000 Maternal/Child clients • Health Works • Medical Care for 25,000 wards of the state • Senior Care • Case management for 3000 seniors

13. Academic & Community Research Partnerships • Formal and informal grouping of organizations and academic institution(s) coming together to achieve common goals or address common problems and where research (e.g., assessment of needs and asset, clinical trial recruitment) is the main area of one of the main area of activity. • The partnership is complementary in nature where each partner, usually, has a unique contribution to make and/or a benefit to receive

14. Why Organizations want to partner with Academic Institutions? • Commitment to a particular research issue • Opportunity to have “contact”, to be in the “network”, or to gain credibility • Opportunity to obtain the latest information and technology, financial resources, jobs and training opportunities • Opportunity to complement each other, to share resources and to work in a cost-effective way • To minimize competition • There is a perceived “pay-off”. Organizations believe that there is something for them.

15. 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

16. Benefits of the Partnerships… • To do better research • To create training sites for the students • To integrate knowledge and practice • To improve the health of the community • To facilitate the translation of the research findings

17. Partnerships… • Are not a new concept • In the 1960s to 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

18. Partnerships…. • In the past year, Public Health has experienced rapid change and is refocusing on population-based care and core functions. • Care has returned to community-level prevention and interventions • Therefore, population-based prevention research is an ideal type of research for community participation

19. Partnerships…. • Public health workers and researchers must knowledge and skills in: • Community assessment • Epidemiological analytic thinking • Effective communication • Community development • Communication • Coalition-buildings • Policy and advocacy

20. Partnerships…. • Can be formed with public and/or private institutions and/or with community-based organizations • They can be short-term or long-term • Partnerships formation were promoted by local and federal agencies (e.g., CDC, HRSA, USDHHS-Office of Minority Health)

21. 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

22. Current Practices of Research on People of Color • The research activity on people of color has not involved a careful and diligent search of available facts.

23. The research on the health of people of color health traditionally has had limited or no utility in understanding or solving important health and social issues.

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

25. Most research on people of color has not been culture or gender specific. • Most research on poor women of color has been done by researchers who belong to either the middle class and/or have a middle class mentality or framework in conducting research

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

27. People of color are arbitrarily excluded from studies because of: • financial constraints • inconvenience to the research team • language barriers • lack of familiarity • personal preference of the investigator

28. In behavioral research, the research hypotheses and overall research design tend to stress a cultural deficit model that reinforces, as a result of the findings, the victim blaming ideology

29. In summary,The research process has included methods of observation, criteria for validating facts and theories that intentionally or unintentionally have been designed to justify pre-conceived ideas and stereotypes of people of color, and consequently…

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

31. Re-Framing the Research Agenda • Rethinking research: -Research is done within a socioeconomic, historical and political framework. -We need to question the myth of “research” as inherently scientific, objective, or useful

32. 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

33. Re-Framing the Research Agenda (cont.) Therefore, The research agenda is one of confronting issues of power, politics and racism • Attitudes, beliefs, and perspectives are as important or more than “knowledge”

34. Re-Framing the Research Agenda (cont.) • Moving from research “on” minorities to research “with” or “by” minorities • (You 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)

35. Re-Framing the Research Agenda (cont.) • Becoming effective “consumers” of research (understanding how critical research is for policy implications) • Minority Research entities (centers) are critical for establishing and challenging legitimacy

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

37. Barriers Related to the Academic Institution • Limited involvement in minority communities • Limited or no reward system for faculty to work with communities (tenured-track Faculty are particularly discouraged) • No economic investment in communities • Limited services to communities (e.g., medical care, job opportunities, technical assistance)

38. Barriers Related to Researchers • Limited experience working with minority Communities • Limited skills and knowledge about • how to access community gate keepers • community group dynamics/politics

39. Barriers Related to Researchers (cont.) • Do not see benefits of having minority investigators in research team or having community representation • Poor detailed planning in the design of minority health research • Lack cultural, gender, age & educational appropriateness in their research approach

40. Barriers Related to Researchers (cont.) • They come to community when they need letters of support for grants • Partnership negotiations with communities at times are not made on an equal basis

41. 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”)

42. Typology… • “ The politically correct” Investigator (bureaucratic/and frustrated researcher. They think they are doing the right, they get burned-out, but no opportunity for promotion) • Activist researchers (committed to improving health, understand the issues and the political processes. Use research for action and social justice.)

43. 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

44. Barriers Related to the Research Process (cont.) • Limited participation of people of color in local and national Organizations, foundations, government entities where research priorities are being developed

45. 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 Research Participants or Subjects

46. Barriers Related to Community Leaders • Lack of trust due to history of oppression, abuses and violations of individual rights (e.g., Lack of informed consent, confidentiality) • Lack of understanding about the importance of research for public policy and program planning and implementation

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

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

49. Main Strategy: Community Participatory Research Models “ Any research study must include the qualities of respect, honesty, and integrity. Participatory research should be the “gold standard” toward which all federally funded research aspires.” in Building Community Partnerships, 1997 written by CDC and other federal agencies representatives.

50. Participatory Research Definition • Calls for the active involvement of the ordinary people in the target community in the collective assessment/investigation of their daily realities in order to transform it. • Community members bring knowledge about the culture, social norms and network, and also about the community health and how the research should be conducted.