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Recruitment and Retention of Minority Participants

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Recruitment and Retention of. Minority Participants. Terry L. Mills, Ph.D. ... all NIH-supported biomedical and behavioral research involving human subjects is ... – PowerPoint PPT presentation

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Title: Recruitment and Retention of Minority Participants


1
Recruitment and Retention of Minority
Participants
  • Terry L. Mills, Ph.D.
  • IoA Professional Development Series
  • October 9, 2001

2
Recruitment and Retention of Minority
Participants
  • The purpose of this presentation is to stimulate
    imaginative thinking about approaches to building
    trustful relationships with underrepresented
    populations . . .
  • that result in long-term collaborative research
    partnerships with minority participants, thus
    enhancing grant applications, proposals, and
    study outcomes.

3
Overview of todays presentation
  • Why we need women and minorities in research
    studies.
  • African American attitudes towards research (a
    focus group study).
  • NIH requirement to include minorities and women.
  • A Theoretical Framework to explain recruitment.

4
Why we need women and minorities in research
studies
  • For many years, researchers did not include women
    in medical research studies because they believed
    it would make the studies too complicated.
  • Medical researchers assumed that if it worked for
    men, then it would work the same way for women
    (Society for Womens Health Research).
    www.womancando.org

5
Why we need minorities and women in research
studies
  • Of course, we now know that women and men can
    react differently to the same treatment.
  • Some treatments that work for men may not work
    for women.
  • Women and men may have different side effects
    from a drug, or need different doses of a drug
    than men.

6
Why we need women and minorities in research
studies
  • However, as obvious as the need to include women
    may seem . . .

7
Why we need women and minorities in research
studies
  • A review of the New England Journal of Medicine,
    Journal of the American Medical Association,
    Journal of the National Cancer Institute, and
    Circulation for the years 1993, 1995, 1997, and
    1998 showed that among NIH-funded, non-sex
    specific studies, approximately one fifth of the
    studies published each year failed to include
    women as research subjects (Vidaver, LaFleur,
    Tong, Bradshaw, Marts, 2000).

8
Why we need women and minorities in research
studies
  • Moreover, only one quarter to one third of the
    studies that included women analyzed data by sex
    of the subjects.
  • These data clearly show the need for increased
    awareness and monitoring of recruitment and
    retention of women in clinical research and for
    the analysis of data by sex of the subjects to be
    carried out consistently (Vidaver et al.)

9
African American attitudes about research
  • Attitudes and beliefs of African Americans toward
    participation in medical research (Corbie-Smith,
    Thomas, Williams, Moody-Ayers,1997)
  • Mistrust of doctors, scientists, and the
    government was consistently reported by focus
    group participants.
  • Many described concerns about the ethical conduct
    of clinicians and investigators.

10
African American attitudes about research
  • Corbie-Smith et al (continued)
  • Many focus group participants cited exploitation
    as supporting evidence for their mistrust of the
    medical establishment.
  • Few participants understood the concept of
    Informed Consent.
  • Participants saw signing the document as
    relinquishing their autonomy and as a legal
    protection for the investigator.

11
African American attitudes about research
  • The Tuskegee Syphilis Study continues to cast its
    long shadow on the contemporary relationship
    between African Americans and the biomedical
    community.
  • Several recent articles have argued that the
    Tuskegee Syphilis Study has predisposed many
    African Americans to distrust medical and public
    health authorities
  • and is a significant factor in the low
    participation of African Americans in clinical
    trials and in the reluctance of many black people
    in seeking routine preventive care.

12
African American attitudes about research
  • As one AIDS educator put it, "so many
    African-American people that I work with do not
    trust hospitals or any of the other community
    health care service providers because of that
    Tuskegee experiment. It is like ... if they did
    it then they will do it again (Report of the
    Tuskegee Syphilis Study Legacy Committee - Final
    Report -- May 20, 1996).

13
African American attitudes about research
  • Prior studies also suggest that African Americans
    are especially difficult to recruit into
    research. For example
  • Arean et al. (1993) reported only one percent of
    those responding to local newpaper and radio ads
    were minority.
  • Ballard, Nash, Raiford, Harrell (1993) reported
    that as of 1989 only roughly 10 of participants
    (60 of 607) in Alzheimers study were African
    American

14
African American attitudes about research
  • Eastman (1996) reported that African Americans
    comprised only 5 of participants in cancer
    clinical trials.
  • Reynolds (1996) reported only 6 African American
    participation in prostate, lung, colorectal, and
    ovarian cancer screening trial.

15
African American attitudes about research
  • A number of researchers have cited barriers to
    recruitment and retention of African Americans
  • researcher and physician bias due to belief that,
    there is greater difficulty in obataining
    African American compliance with a study
    protocol and that they have higher attrition
    rates (Shavers-Hornaday et al, 1997).

16
African American attitudes about research
  • Swanson and Ward (1995) suggest that bias is
    evidenced when researchers exclude minorities on
    the claim that, they are hard to reach.
  • Another barrier is the small number of minority
    researchers (Swanson and Ward).

17
African American attitudes about research
Recommended strategies for increasing African
American participation in research
  • Raising awareness through outreach programs.
  • Publicity campaigns targeted to African
    Americans.
  • Increasing awareness of research agendas among
    physicians . . .

18
African American attitudes about research
  • Use of incentives such as financial compensation,
    therapeutic interventions, provision of health
    services, and provision of transportation
    services to facilitate participation.
  • Better understanding of the underlying distrust
    and cultural context in which African Americans
    consider research (Shavers-Hornaday et al. 1997).

19
NIH Guidelines on inclusion of women and
minorities
  • The National Institutes of Health (NIH) has
    established guidelines on the inclusion of women
    and minorities and their subpopulations in
    research involving human subjects, including
    clinical trials, supported by the NIH, as
    required in the NIH Revitalization Act of 1993.

20
NIH Guidelines on inclusion of women and
minorities
  • Because the primary aim of biomedical and
    behavioral research is to provide scientific
    evidence resulting in a change in health policy
    or a standard of care, it is imperative to
    determine whether the intervention or therapy
    being studied affects women or men or members of
    minority groups and their subpopulations
    differently.
  • The guidelines are intended to ensure that all
    NIH-supported biomedical and behavioral research
    involving human subjects is carried out in a
    manner sufficient to elicit information about
    individuals of both genders and the diverse
    racial and ethnic groups.
  • Increased attention, therefore, must be given to
    gender, race, and ethnicity.

21
NIH Guidelines on inclusion of women and
minorities
  • NIH funding components will not award any grant,
    cooperative agreement, or contract or support any
    intramural project that does not comply with this
    policy. For research awards that are covered by
    this policy, awardees will report annually on
    enrollment of women and men, and on the race and
    ethnicity of research participants.

22
Theoretical Framework to Explain the Recruitment
Process
  • The Matching Model (Levkoff, Levy Weitzman)
  • Multi-dimensional model that explains various
    enablers and barriers.
  • Macro-level enablers and barriers
  • Mediator-level enablers and barriers
  • Micro-level enablers and barriers

23
Theoretical Framework to Explain the Recruitment
Process
  • At the macro-level of analysis, burdens of
    service demands may restrict community agency
    personnel from participating in research.
  • Barriers also exist at the macro-level when the
    academic institution is perceived as not being
    connected to the community or when multiple
    institutions compete for the same sampling pool.

24
Theoretical Framework to Explain the Recruitment
Process
  • Yet, macro-level factors also can enable
    recruitment and retention through collaboration
    with community agencies or offers of technical
    assistance by academic institutions.

25
Theoretical Framework to Explain the Recruitment
Process
  • Mediator-level barriers are constructed when
  • Gatekeepers attempt to protect participants from
    real or perceived harm.
  • When cultural interpretations of health and
    illness result in denial of the existence of a
    health condition.

26
Theoretical Framework to Explain the Recruitment
Process
  • Still, at the mediator-level, gatekeepers also
    can enable recruitment and retention when they
    believe the research is important to the
    community.

27
Theoretical Framework to Explain the Recruitment
Process
  • At the micro-level, barriers are erected when
  • participants and their caregivers distrust
    research.
  • participants have fears of family stigma, loss of
    services, or lack of confidentiality.

28
Theoretical Framework to Explain the Recruitment
Process
  • On the other hand, the micro-level of recruitment
    and retention may function to enable the research
    effort when
  • they are disposed to want to tell their stories.
  • Improve the lives of others
  • value the research

29
Theoretical Framework to Explain the Recruitment
Process
  • It is important to note that researchers
    themselves can take on the role of gatekeepers
    when
  • they do not value the research
  • the research is opposing their own activist
    agenda.
  • interdisciplinary differences among research team
    members make collaboration difficult.

30
Possible Focus Group Questions for Community
participants (Freimuth et al. 2001)
  • What comes to mind when I say research?
  • What is informed consent?
  • What is a clinical trial?
  • Who has ever participated in a research study?
  • Why do you think we are conducting this study?
    (our motivation)

31
Possible Focus Group Questions for Community
participants (Freimuth et al. 2001)
  • Who benefits from this research?
  • What is your motivation for participation in
    this study?
  • What concerns do you have about participating in
    this study?

32
Summary
  • Although the NIH requires inclusion of women and
    minorities, there still is a need to conduct
    appropriate gender and race/ethnicity data
    analyses.
  • Recruitment of minorities involves an investment
    in both time and dollars.
  • We must be willing and interested in cultivating
    an atmosphere of trust, and taking a longer-term
    view of data collection.

33
IoA efforts in the community
  • Robert Wood Johnson core partnerships.
  • Coalition for Minority Health.
  • 8th annual Senior Health Forum.
  • IoA Senior games sponsorship.
  • Development of participant pool
  • Others . . . .

34
Questions for Group Discussion
  • What challenges have you faced in recruiting
    minority participants?
  • What approaches might we take in building a
    stronger relationship with the local minority
    community?
  • Do you need to be a minority, or a women to
    successfully recruit and retain minority
    participation in your research?
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