Recruitment of Minorities as Participants in Public Health Research

1. Recruitment of Minorities as Participants in Public Health Research Aida L. Giachello, Ph.D. Associate Professor and Center Director Midwest Latino Health Research Training and Policy Center Jane Addams College of Social Work University of Illinois at Chicago 312 413-1952 sph 1998 Summer Public Health Research Institute on Minority Health, UNC-CH

2. Objectives of Presentation • To provide an overview of the many issues involved in recruitment of minorities as participants in public health research • To share some of the barriers and challenges in recruitment of minorities as participants • To share selected findings from a series of surveys conducted by the UIC Midwest Latino Health Research Center in the areas of Cancer Clinical Trials and Diabetes Education Intervention Studies

3. An Overview of the Issues Involved in the Recruitment of Minorities

4. 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 • It consequently has reinforced in our society the traditional patterns of power, status and privilege (Hixson, 1993)

5. Barriers to Recruitment of Minorities as Participants in Research Barriers associated with: • Institutions • Funding Sources • Researchers • Health Services Providers • Potential Participants or Subjects • Community • Research Process

6. Barriers Associated with Institutions

7. Barriers Related To Institutions(Academic, Depts of Public Health, Hospitals) • Limited involvement in minority communities • Limited number of minority staff • Limited or no reward system for faculty/staff to work with community organizations • (in universities, tenured-track Faculty are at times discouraged) • No economic investment in minority communities • Limited services (e.g., medical care, technical assistance) to communities of color

8. Challenges In Academic Institutions • Limited minority faculty and minority researchers • Minority faculty confront sexism, racism, and differential treatment on the basis of academic unit, rank, training, academic credentials (M.D. vs non-M.D.) • No infrastructure and support system to conduct research on Minority Health

9. Challenges In Academic Institutions (2) • Limited pool of experts on Minority Health (Lack of methodologists ) • Minority researchers tend to conduct research in isolation • Minority Health Research is considered important but is not valued • There are no/or limited policies and procedures to conduct multidisciplinary research

10. Challenges In Academic Institutions (3) • There are few Minority research projects where Minority investigators are in leadership positions • When non-minority researchers are doing research on minority health, they tend to a) use this as an opportunity to enhance their careers and; b) look down on minority students, faculty and minority researchers.

11. Barriers Associated with Funding Sources

12. Barriers with Funding Agencies • Provide limited funding for research • Program staff are non-minority • Program staff have strong biases against minority investigators • Program staff have limited knowledge and research experience and/or limited experience in working with minority communities and/or have never worked in a university setting • Funding agencies do not include people of color in local or national committees where research priorities are being developed, therefore, some studies are perceived by the communities as irrelevant • Project officer is a key individual requiring inclusion of women and minorities

13. Barriers Associated with Researchers

14. Barriers Related to Researchers • Limited experience working with Minority Communities • Poor knowledge and poor detailed planning in the design of the research • Limited skills and knowledge about • how to access gate keepers • community group dynamics/politics • community culture • Middle class orientation

15. Barriers Related to Researchers (2) • Do not see benefits of having minority investigators in research team or having community representation • Lack of cultural, gender, age & educational appropriateness in their research approach • Limited skills in recruitment and retention • They come to community when they need letters of support for grant • Partnership negotiations are not made on an equal basis

16. People of color are arbitrarily excluded from studies because: • There is a need for larger sample sizes for meaningful analysis • financial constraints (including extra cost of translation and cultural adaptation of instruments) • inconvenience to the research team • language barriers • lack of familiarity • personal preference of the investigator

17. Cancer Clinical Trials: Selected Findings from the Researchers survey (n=28) • 88% of clinical researchers (from academic and cancer centers) reported that with the exception of the media, they have no knowledge and skills on how to reach out to minorities and women inside and outside their institutions (e.g., teaching hospitals).

18. Cancer Clinical Trials: Selected Findings from the Researchers survey (2) • 90% reported that they have difficulties in recruiting minority patients in their own institutions due to: • competition for patients between departments and units • lack of internal referral systems • lack of institutional commitment to serving minorities and women, etc.

19. Cancer Clinical Trials: Selected Findings from the Researchers survey (3) • 67% of the researchers admitted that the clinical trials criteria that they develop for patient recruitment and enrollment tends to purposely exclude minorities and women, etc.

20. Other barriers identified by researchers for minority participation in cancer clinical trials were: • patients fears of government sponsored research (25%) • patient distrust of medical system (16%) • lack of study resources to provide patients with incentives (16%) • patients difficulties in understanding what is a clinical trial (8%) • and researchers difficulties in “finding” minorities (8%)

21. Barriers Related to Health Care Providers

22. Cancer & Clinical Trials: Selected Findings from Physicians &other health care providers survey (n=100) • About 42% of physicians reported being aware of current cancer trials • Primary care practitioners were least aware of these studies (26%) • Practitioners reported awareness of clinical trials in the areas of breast (33%) and colon (30%) cancers. However, only 73% stated that they have enough information to explain these types of trials to their patients

23. Cancer & Clinical Trials: Selected Findings from Physicians &other health care providers survey (2) • Most practitioners (90%) believe that cancer clinical trials will benefit their patients • 49% of all respondents stated that they had none or limited resources in terms of staff, facility, equipment or fund that would allow them to participate in clinical trials

24. Cancer & Clinical Trials: Selected Findings from Physicians &other health care providers survey (3) • About 30% of primary care physicians stated that they had no resources or limited resources • 65% of the practitioners will be interested in participating in clinical trials research with universities; However, 55% expect meaningful input in the research design • 53% expect monetary compensation for their time involvement, and/or for the use of their facilities and resources

25. Cancer & Clinical Trials: Selected Findings from Physicians &other health care providers survey (4) Potential reasons for refusing collaboration in cancer studies: • no staff made available (27%), • no monetary compensation provided (22%), • no time to help researchers (3%), • other reasons (14%).

26. Cancer & Clinical Trials: Selected Findings from Physicians &other health care providers survey (5) • 53% expect to be co-author of research reports or articles; and • 49% expect assurance that they would not loose their patients.

27. Barriers Associated with Potential Participants or Subjects

28. Barriers Related to Participants or Subjects in the Research Project • Distrustful attitude • Sociocultural Characteristics • Linguistic • Socioeconomic • High mobility • Limited telephone coverage

29. Barriers Related to Participants or Subjects in the Research Project (2) • Geographic barriers • Fear of treatment • Limited access to care • No monetary incentive

30. Cancer and Clinical Trials: Selected findings from Cancer Survivors survey (N=426) • 60% of cancer survivors said they have heard about clinical trials before having cancer. • However, once diagnosed with cancer, only 28% of them were asked by their doctors or by anyone else to participate in a clinical trial. • Of this group, only 15% had actually been a participant in a cancer research study and • 10% or 37 cancer survivors (out of 426) were active in a trial.

31. Cancer and Clinical Trials: Selected findings from Cancer Survivors survey (2) • Their main reasons for participating in a cancer clinical trial were: • desire to get better (hope for a cure) (53%) • wanted the latest treatment (26%) • wanted to help others (11.8%)

32. Suggested strategies by cancer survivors for recruiting cancer patients Recruitment should be done through: • primary care physicians (45%) • family (4%) • community organizations(10%) • providing simple information in writing (29%) • having information in native language (5%) Minorities, compared to whites, were most likely to suggest using the family system and community-based organizations.

33. Suggested strategies by cancer survivors for recruiting cancer patients (2) Mailing information about cancer studies and treatment options (20%) • Providing information through local and ethnic media (11%) • Providing reduced cost of new medical treatment (13%) • Providing financial compensation (9%) • Having support groups available (11%) • Providing other safeguards (13%) (to prevent abuses and violation of human rights)

34. Strategies to retain participants after enrollment: by providing: • payment for their time involvement and for taking time off from work (16%) • progress reports of results in trials (22%) • incentives such as gifts (5%) • support groups (20%) • maintaining regular contact (25%) • providing an information hotline (11%)

35. Barriers Associated with Community

36. Barriers Related to Community Involvement • 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 to improve public health, for public policy, and for program planning and implementation

37. Barriers Related to Community Involvement (2) • Limited understanding about how Universities and Depts. of Health operate and work • Community leaders have different expectations of the research partnerships

38. Selected Findings from the Community Organization Surveys Most of the organizations represented in the study were small, serving less than 1000 clients. Their primary client population was: • 40% Hispanic/Latino, • 17% White European, • 17% African American and • 10% Native American

39. Selected Findings from the Community Organization Surveys (2) • About 51% of the organizations reported being approached by researchers. • They were often being asked to: • organize discussion groups and focus groups with clients • get participants in a research study • get clients to participate in a prevention study; or • get clients to participate in a health education class

40. Selected Findings from the Community Organization Surveys (3) • 28% of respondents were aware of cancer research going on in their communities • but only 7% had been asked to participate in recruiting minorities or women for cancer clinical studies.

41. Selected Findings from the Community Organization Surveys (4) To be willing to assist researchers, community agencies want: • meaningful input in the development and design of research studies (35%) • monetary compensation for their time (30%) • monetary compensation for use of their facilities (24%) • want to be included as full collaborators of the study, and • to be co-authors of the publications (11%)

42. Community agencies perceived barriers for patient non-participation in studies: • fear of treatment (24%) • lack of bilingual/bicultural staff (22%) • cost of treatment (15%) • transportation problems (18%) • distrust of universities and researchers (11%) • distrust of government (10%)

43. Strategies suggested by community organizations to increase minority participation: • having researchers who understand communities and minority culture, and speak their language • provide patient with transportation, food and child care • provide patients with financial compensation, particularly to compensate patient taking time off from work

44. Community Organizations’ Expectations • Respect • Equal Partnership • Technical Assistance • Job Opportunities • Training • Collaboration in Publications

45. Barriers Associated with Research Process

46. Barriers Related to the Research Process • Limitations of Health Data for Planning and Implementing Health Studies on People of Color • Limited Research Funding • Limited Minority Research Infrastructure • Poor Data Collection Instruments

47. Barriers Once Involved in Research Partnerships with Community Organizations • Communication barriers • Cultural barriers • Researchers are more task-oriented • Community workers are more “relationship-oriented” • Social distance: “they” versus “us”

48. Barriers Once Involved in Research Partnerships with Community Organizations (2) • Researchers assume the role of “experts”, they “know it all” because of technical knowledge • Researchers do not value the contribution of minority investigators or the “culture” expertise community workers

49. Conclusions • It is critical for us to seriously examine how research is done in this society, who does it, who benefits from it and who it serves. • Building community and university partnerships will require universities to invest in neighborhoods and in minority communities in a more comprehensive fashion.

50. Recommendations • This involves using these institutions to have a presence in communities, to contribute to their economic well-being and to provide community agencies with technical assistance and training • To correct some of the limitations in conducting research on minority health we need to: 1. Train more minority investigators 2. To establish minority research centers in academic institutions.