Recruitment of Diverse Populations for Health Research

1. Recruitment of Diverse Populations for Health Research Anna Nápoles-Springer, Ph.D. Eliseo J. Perez-Stable, M.D.

2. Outline • NIH mandate • RCMAR Centers as a model to improve science of recruitment • Introduce recruitment issues in diverse groups • Review framework and critical questions for designing recruitment approaches • Community-based participatory research • Example from the field

3. NIH Mandate to Recruit Minorities • 1993 NIH Revitalization Act states that minorities must be included in clinical research supported by NIH • For clinical trials, recruitment methods must yield numbers to allow valid evaluation of ethnic differences • To provide scientific evidence to inform health policy or standard of care that is relevant for major ethnic groups

4. Lack of Evidence on Recruitment • Lack of systematic studies of recruitment effectiveness • Data on effectiveness of recruitment and retention methods seldom published by ethnicity • Review of recruitment studies (‘93-95) + all articles with human subjects from NEJM and Circulation (‘95) • ethnicity reported for < 2% of potential participants; 3% of eligible; and <2% of refusals • ethnicity on 59% vs. age on 91% and gender on 80% of enrolled subjects (Ness R. AEP, 7:7; 472-8)

5. Outline • NIH mandate • RCMAR Centers as a model to improve science of recruitment • Introduce recruitment issues in diverse groups • Review framework and critical questions for designing recruitment approaches • Community-based participatory research • Example from the field

6. The Resource Centers for Minority Aging Research (RCMAR) • Six Resource Centers for Minority Aging Research funded by NIA, NINR, and the Office of Research on Minority Health • To decrease minority health differentials in older people

7. What are the Community Liaison Coresof the RCMARS? • Create and maintain relationships with minority community members and CBO • To facilitate interaction among community members and researchers planning studies on aging in communities of color • To enhance recruitment and retention of ethnically diverse older participants • Conduct research on the effectiveness of research methods in diverse groups

8. Outline • NIH mandate • RCMAR Centers as a model to improve science of recruitment • Introduce recruitment issues in diverse groups • Review framework and critical questions for designing recruitment approaches • Community-based participatory research • Example from the field

9. Research in Older African Americans and Latinos: Perspectives from the Community A study by the CADC Community Liaison Core Anna Nápoles-Springer Mark Alexander Gina Moreno-John Kevin Grumbach Deirdra Forté Martha Rangel-Lugo

10. Objectives of CADC Study • To identify social and health priorities of African American and Latino communities • To describe attitudes of African American and Latino community about the participation of minorities in health research

11. Identifying Community Priorities and Attitudes about Research • Mail survey of San Francisco and Oakland CBOs serving African Americans and Latinos identified through community resource listings and prior outreach efforts • 4 Focus groups with community residents of Bay View Hunters Point, Western Addition and Mission District

12. Demographic CharacteristicsCBO Survey Participants • 117 respondents (75% response rate) • Average time with organization of 7 years • 15% African American, 37% Latino, 39% non-Latino White • Over half of the respondents ages 41 to 60 y • 73% women • Almost 90% of sample > college graduate

13. CBO SurveyUnmet Needs of Community Elders Percent Needing Lots/Huge RankUnmet Need Amount of Help 1 Affordable housing 71 2 Enough money to meet needs 70 3 Transportation 60 4 Safer neighborhoods 60 5 Medical care 53 6 Help with household tasks 45 7 Care for depression or anxiety 45

14. CBO SurveyAttitudes about Participation in Research CBOs asked to indicate how much they agree/disagree on items about participation of AA & L in research. Topics: • Trust in researchers • Reasons for participating • Reasons for not participating

15. CBO SurveyTrust in Researchers % Agree% Neither% Disagree L and AA do not take part due to distrust 65 29 6 L and AA afraid due to discrimination 43 39 18 Studies guard health of participants 41 45 14 Researchers protect rights of participants 35 55 10 Participants treated as guinea pigs 30 46 24 Good reason not to trust health researchers 25 43 32 Researchers are condescending to minorities 25 62 13

16. CBO Survey Benefits of Participation % Agree% Neither% Disagree Learn more about own health problem 82 15 3 Find safe and effective treatments 82 18 0 Improves health of their communities 79 15 6 Contributes to science 77 21 2 Increases access to medical advances 76 16 8 Place to go, someone to talk to 51 37 12 Good way to get free medical care 40 47 13

17. CBO Survey Reasons Do Not Participate % Agree% Neither% Disagree Researchers not same culture or language 73 21 6 Too busy meeting basic needs 49 31 20 Too busy with caregiving 43 28 29 Few real benefits to L & AA 34 31 35 Research not relevant to L & AA concerns 24 32 44 Results in loss of privacy 23 47 30 Too ill or disabled 14 32 54

18. Demographic CharacteristicsFocus Group Participants • 36 participants in 4 focus groups • Ages 58 to 84; mean age 73 • 19% < 6th grade education • 42% annual income < $10,000 • 100% insured • 31% of African Americans and 95% of Latinos agreed to be re-contacted

19. Focus GroupsSocial Priorities • Urban isolation and vulnerability • Racism and discrimination in housing and health care • Social impotence, hopelessness • Personal safety of elders • Affordable and easy access to housing

20. Focus GroupsHealth Priorities • Need for community-based health centers • Access to new prevention and treatment options • Better communication with physicians • Better insurance coverage

21. Focus GroupsBarriers to Participation in Research • Distrust of doctors, researchers, institutions • Lack of information • Lack of follow-up if adversely affected • Inconvenience • Lack of transportation • Caregiver obligations

22. Focus GroupsExperimentation “They don’t know if people are tellin’ the truth. You know, they will tell you you’re gonna get in this research. Well, what IS this research? Are you REALLY gonna do what you say you’re gonna do? Or are you gonna tell me, are you puttin’ me, and then injectin’ me with the AIDS virus, or a syphilis virus, or something else, and I’m not aware? …People are afraid. They just don’t know enough about these programs.”

23. Focus GroupsBenefits of Research • Advance scientific knowledge • To preserve one’s health • To learn more about a specific disease • To teach researchers about cultural differences • Access to new treatments

24. Focus GroupsLack of Tangible Benefits “Me, I would have to know that the information they get is gonna benefit the community, as well as me, in some way. If I knew…the findings would benefit the community, and something would be DONE with those findings. They’ve got researchers from UC everywhere, have been out here to research the soil, the air, everything. And then after, they go, that’s the last we hear of it.”

25. CBO SurveyEarly Involvement of the Community “Ensuring diverse participation by tapping into the expertise of leading Latino and African-American community members and involving them early on in the development of a research agenda and throughout is the best way to ensure that the research will be beneficial to the needs of these different communities.”

26. Researchers Working For Communities CBO respondent “Researchers need to spend time in agencies and in community or clients’ homes to develop trust. Paying people and providing transportation is not enough to increase participation. The study has to have some intrinsic worth to the research participant. Communicating the results back to the agency and participants is crucial to developing trust.”

27. Conclusions • Need to improve fit between the priorities of researchers and those of the community • AA & L community members place a great value on knowledge, especially if it improves their health or their communities’ health • AA & L are willing to participate if: • we openly address their concerns • we reduce barriers to participating

28. Outline • NIH mandate • RCMAR Centers as a model to improve science of recruitment • Introduce recruitment issues in diverse groups • Review framework and critical questions for designing recruitment approaches • Community-based participatory research • Example from the field

29. Recruitment Factors Sampling frame Individual characteristics Study characteristics Recruitment methods Characteristics of personnel Stages of Recruitment Invitation to participate Establishing contact Responding Study completion Recruitment Framework

30. Factors and Stages of Recruitment: Critical questions Stage 1: Invitation to participate • Is the sampling frame likely to yield a representative sample of the targeted subgroups (adequate coverage)? • Does the initial contact method take into account, literacy, culture, education, language, familiarity with and acceptance of research? • Are the messages appealing to the targeted audience? • Are their pre-recruitment strategies that might be helpful (e.g., radio ads, outreach)?

31. Factors and Stages of Recruitment: Critical Questions Stage 2: Establishing Contact and Eligibility • How accurate is the contact information? • When is the best time to attempt contact? • Do I have to obtain the consent of other family members? • Is no response a soft refusal? • Will poor health/high mortality affect recruitment? • Is eligibility criteria a barrier?

32. Factors and Stages of Recruitment: Critical Questions Stage 3: Responding • How do I deal with refusals? • How do I deal with those who do not respond? • Is the respondent burden reasonable? • Are there tangible benefits to participating? • Are the setting, approach and personnel welcoming?

33. Factors and Stages of Recruitment: Critical Questions Stage 4: Study Completion • How do participants feel about the study? • How do I retain people in the study? • Is the respondent burden reasonable? • Are there tangible benefits to participating? • Are the setting, approach and personnel welcoming? • How do I feed back the results to participants and the communities involved?

34. Tailored Recruitment • Persons of less education and minorities less likely to respond to traditional method (e.g., flyers, newspaper ads, mail) • Need to develop recruitment messages, strategies and materials more likely to reach these groups • Need to track cost-effectiveness by ethnicity

35. What Works and What Doesn’t? • Use multiple strategies, personal approaches, community involvement, tangible benefits, culturally similar research personnel • Address language, economic, transportation, childcare needs • Openly address issues of distrust and fear

36. What Works and What Doesn’t? • Build credibility of research institution through community service-address issues of distrust • Increase awareness of the resources available at the research institution for the community • lectures, medical and referral services, translations, health screenings, clinical trials, grant writing • Increase access to research • community forums, outreach, convenience, newsletters, responsiveness to community priorities

37. Practical Recruitment Advice • Pretest recruitment messages and strategies • Ex: pre-tested ethnically tailored flyers, contact letters, envelopes • Write developmental time into grants for recruitment and instrument development • Ongoing monitoring of recruitment results is critical with adjustments as necessary • Report results by ethnicity-need to build data on effectiveness of methods

38. Outline • NIH mandate • RCMAR Centers as a model to improve science of recruitment • Introduce recruitment issues in diverse groups • Review framework and critical questions for designing recruitment approaches • Community-based participatory research • Example from the field

39. Why an Increased Focus on Communities? • To broaden our models of health to include individual, social and environmental influences • Expansion of outcomes from morbidity and mortality to include well-being and quality of life • Managed care focus on enrolled populations and health maintenance • Challenges of addressing health disparities

40. Redefining Primary Care • IOM concept of primary care: integrated, accessible health care services, attend to wide range of individual needs, long-term partnership with clients, and broader family and community context of health care • Attention to social and economic factors affecting individuals, families and communities that may compromise health and well-being • Includes specific community-based strategies that empower: utilize assets of a community to improve the health and well-being of its members

41. Why Include Communities in Research? • Enhances usefulness of research data • Develops skills and capacity of community members • Improves quality and validity of research • Creates theory based on social experience • Involves marginalized communities in addressing their own health issues

42. Key Principles of Community-based Participatory Research (CBPR) • Recognizes community as as important aspect of individual and collective identity • Builds on strengths and resources of community to improve health • Facilitates collaborative partnerships through all phases of research • Integrates knowledge and action for mutual benefit of all partners (Israel B. Annu Rev Public Hlth. 1998. 19:173-202)

43. Key Principles of CBPR • Shared learning and empowering to address social inequalities • Iterative process: partnership development and maintenance, assessment, goal-setting, development of methods, data collection, interpretation, dissemination, policy, action, sustainability • Positive and ecological perspective of health • Dissemination of findings to all partners (Israel B. Annu Rev Public Hlth. 1998. 19:173-202)

44. Methodological Issues • Flexibility to tailor methods to objectives, context, and interests of community • Involve community members in all stages • Conduct community assessment • Develop training and educational opportunities • Involve partners in dissemination • Interdisciplinary research teams

45. Other Issues • Community individuals and agencies often volunteer their time (as do research staff) • CBPR may not carry same promotional weight in academia as other types of research • More difficult to obtain funding • Lack of support for relationship building and facilitating community change • Need for more in-depth publications of processes and outcomes of CBPR

46. Limitations of CBPR • Will not resolve racism and social inequalities by itself • Social inequalities persist in the research process as well But….. CBPR explicitly takes aim at these inequalities and their implications for health differentials

47. Outline • NIH mandate • RCMAR Centers as a model to improve science of recruitment • Introduce recruitment issues in diverse groups • Review framework and critical questions for designing recruitment approaches • Community-based participatory research • Example from the field

48. Translation and Language • Standard technique: Forward/Backward • Reconcile differences on review by fluent speakers • Target specific population in your area • Interviewers must be fluent • Reading level as low as possible–6th grade minimum • Do not assume that any standard method will work

49. Sampling Strategies • RDD telephone survey • Use census tracts to identify sample • Self identified ethnicity • Define household • Last one to have birthday • Limited to households with telephones • Literacy less problematic • Challenge to sample older persons

50. Sampling Strategies • Use lists and identify surnames • 80% sensitive and specific for Latinos • Very sensitive and specific for Vietnamese • Increasing technique with proliferation of phones • Expensive