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Identifying and Addressing the Cultural
Barriers to Recruitment
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Myth or Fact
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Myth or Fact
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Race means the same thing to everyone.
Myth or Fact
People define race in many different ways.
Some people, for example, define race based
on skin color, while others define it based on
cultural practice.
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Racial differences can be ascribed solely to
genetic differences.
Myth or Fact
Environmental factors also contribute to
observed differences among racial groups.
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Hispanic Americans do not need as much medication for
pain management as Caucasian Americans because they
have a high tolerance for pain. Myth or Fact
People of Hispanic background may have a strong
belief in familismo, where the family and extended
family may play a major role in their lives. A patient who
believes in familismo and suffers from pain may refrain
from saying so because he/she may not want this to
negatively impact the family.
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Complexities of Culture
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Generalizing Versus Stereotypes
Describing an entire cultural group implies
that all members within that group is
exactly the same. This is stereotyping and
can be dangerous when applied in a
healthcare environment. It is important to
remember that diversity exists within
groups and every situation should be
treated as a case-by-case scenario.
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Do You Think the Average African American is Better Off,
Worse Off, or Just About as Well off as the Average White Person
in Terms of Access to Health Care?
70
53
Better Off
About the Same
Worse Off
No Opinion
35
18
Source: Morin, 2001
0
Whites
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African Americans
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Perceptions of Disparities in Health Care
Generally speaking, how often do you think our
health care system treats people unfairly based on…
Percent Saying “Very/Somewhat Often”
Doctors
The Public
72%
Whether or not they
have insurance
70%
43%
How well they
speak English
58%
29%
What their race or
ethnic background is
Whether they are
male or female
47%
15%
27%
Source: Kaiser Family Foundation, National Survey of Physicians, March 2002 (conducted March-October 2001); Survey of Race,
Ethnicity and Medical Care: Public Perceptions and Experiences, October 1999 (Conducted July – Sept., 1999)
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Cultural Barriers to Minority Recruitment
to Clinical Trials
Perception
Probability
Permission
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Perception
• Lack of patient education to inform
participants on clinical trials.
• Primary care physician’s lack of knowledge on
existing and available clinical trials to
recommend to his patients.
• Community or family’s lack of education on
clinical trials can negatively affect the
enrollment rates of participants.
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Probability
• Lack of culturally tailored information to target
all culturally diverse groups of people.
• Lack of interpreters at research sites.
• Provider/researcher may not be culturally
sensitive enough to successfully recruit
patients for clinical trials.
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Permission
• Patient or patient’s family’s mistrust in in
clinical trials may prevent participants from
enrolling.
• Staff may be culturally incompetent and
unsuccessful at recruiting participants.
• Religious/spiritual beliefs: studies may
interfere with a patient’s beliefs or rituals will
affect their decision to participate.
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Case Study: Robert Philips’ Story
Robert Philips is an African American who has endstage renal disease (ESRD), severe and permanent
kidney failure. He is on hemodialysis and is on the
waiting list for renal transplantation. Robert voices
clearly how he feels the treatment of African
Americans who need renal transplants differs from
that of others.
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Play Robert Philips clip.
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Things to Consider
How might mistrust affect a participant’s
attitude towards clinical trials ?
How would you approach a participant who
doesn’t trust the designs of your study?
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Mistrust is Deeply Rooted
Tuskegee Syphilis Experiment (1932-1972) was a clinical study
conducted in Tuskegee, Alabama where information and medicine to
treat those infected with syphilis were withheld from the African American
community. Numerous people died and/or contracted the disease.
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Perception-Solutions
Lack of Appropriate
Educational Materials
Lack of Knowledge
Lack of Family /
Community Acceptance
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Develop outreach
programs and materials
with culturally appropriate
messages that are
relevant to all economic
and age ranges. These
materials must also
answer all concerns and
correct all misconceptions
about clinical trials.
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Probability-Solutions
Tailored information
to target all diverse groups.
Interpreters to bridge the
language barrier.
Using cultural
competency as
the model to
raise awareness
and increase
enrollment.
Effective communication between
provider and participant.
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Probability-Solutions
Study Design
Study sites and clinical teams need to do an analysis on why their study designs target
certain populations and not others. Is this necessary to the study? If not, amendments
to the study design will be necessary to bridge the gap of minority groups
underrepresentation in clinical trials.
Language
Obtaining translated materials and professional and cultural competent interpreters is
important to overcoming language barriers. Family interpreters are not always a
dependable source to rely on.
Patient/Provider Communication
Effective communication between provider and patient will require provider sensitivity
to patient’s cultural beliefs, extra time spent with patient to answer any questions that
they or any of their family members might have. The patient needs to feel comfortable
with the provider in order to feel free to voice his/her concerns.
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Permission-Solutions
Religious / Spiritual Beliefs
Patient / Provider Relationship
Family / Community
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Culturally
competent
communication is
key and should be
done in a
respectful, open,
honest, and
culturally
competent manner.
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Acceptability-Solutions
Religious / Spiritual Beliefs
Patient / Provider Relationship
Family / Community
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Communication is
key and should be
done in a respectful,
open, honest, and
culturally competent
manner. Provider/
researchers need to
be sensitive to the
needs and concerns
of the patient to gain
patient trust.
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