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Recruitment of Diverse Populations for Health Research

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Title: 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 lt 2 of potential
    participants 3 of eligible and lt2 of refusals
  • ethnicity on 59 vs. age on 91 and gender on
    80 of enrolled subjects
  • (Ness R. AEP, 77 472-8)

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 Cores of 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 Characteristics CBO 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 gt college graduate

13
CBO Survey Unmet Needs of Community Elders
  • Percent Needing
  • Lots/Huge
  • Rank Unmet 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 Survey Attitudes 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 Survey Trust 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

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 Characteristics Focus Group
Participants
  • 36 participants in 4 focus groups
  • Ages 58 to 84 mean age 73
  • 19 lt 6th grade education
  • 42 annual income lt 10,000
  • 100 insured
  • 31 of African Americans and 95
  • of Latinos agreed to be re-contacted

19
Focus Groups Social 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 Groups Health Priorities
  • Need for community-based health centers
  • Access to new prevention and treatment options
  • Better communication with physicians
  • Better insurance coverage

21
Focus Groups Barriers 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 Groups Experimentation
  • They dont know if people are tellin the
    truth. You know, they will tell you youre gonna
    get in this research. Well, what IS this
    research? Are you REALLY gonna do what you say
    youre 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 Im not aware? People are afraid. They
    just dont know enough about these programs.

23
Focus Groups Benefits of Research
  • Advance scientific knowledge
  • To preserve ones health
  • To learn more about a specific disease
  • To teach researchers about cultural differences
  • Access to new treatments

24
Focus Groups Lack 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 knewthe findings would
    benefit the community, and something would be
    DONE with those findings. Theyve got researchers
    from UC everywhere, have been out here to
    research the soil, the air, everything. And then
    after, they go, thats the last we hear of it.

25
CBO Survey Early 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 Framework
  • Recruitment Factors
  • Sampling frame
  • Individual characteristics
  • Study characteristics
  • Recruitment methods
  • Characteristics of personnel
  • Stages of Recruitment
  • Invitation to participate
  • Establishing contact
  • Responding
  • Study completion

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 Doesnt?
  • 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 Doesnt?
  • 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. 19173-202)

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. 19173-202)

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 possible6th 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

51
Recruitment Guidelines
  • Personal contact is important
  • Respect for authority will lead many to say yes
    when they really wont do it
  • Refusal/agreement cards with initial contact
  • Endorsement by CBO
  • Use leverage of health professional
  • Investigators have to get involved

52
Programa Latino Para Dejar de Fumar Example of a
Community Intervention
  • Guia Para dejar de Fumar--self-help guide
  • Electronic media in Spanish
  • Print media limited
  • Billboards
  • Community participation and presence
  • Health professionals role?

53
Evaluation Of Community Interventions
  • Is it possible to prove efficacy?
  • Effectiveness methods less rigorous
  • What about process?
  • Can the gut overcome the brain?

54
Pathways to Cancer Screening for Latinas
Community Intervention
  • Free distribution of educational booklet in
    Spanish on breast and cervical cancer screening
  • Creation of a network of volunteers to
    disseminate materials
  • Spanish-language mass media campaign using
    community role models to increase awareness

55
Lessons Learned
  • Have to work with the community
  • Systematic approach defines content
  • Prestige of university still has relevance
  • High intensity and emphasis on process
  • RCT would be best.
  • Independent cross- sectional samples?
  • Cohort follow-up
  • Alternatives?
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