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Journal of Community HealthThe Publication for Health Promotionand Disease Prevention ISSN 0094-5145 J Community HealthDOI 10.1007/s10900-013-9659-z
What Do People Really Know and ThinkAbout Clinical Trials? A Comparison ofRural and Urban Communities in theSouth
Daniela B. Friedman, CarolineD. Bergeron, Caroline Foster, AndreaTanner & Sei-Hill Kim
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ORIGINAL PAPER
What Do People Really Know and Think About Clinical Trials?A Comparison of Rural and Urban Communities in the South
Daniela B. Friedman • Caroline D. Bergeron •
Caroline Foster • Andrea Tanner • Sei-Hill Kim
� Springer Science+Business Media New York 2013
Abstract Clinical trials (CTs) have the potential to pro-
vide the most advanced medical treatments and screening
options and help medically underserved individuals,
including those in rural communities, obtain the medical
care they need. Despite the need for access to care, CT
participation remains low in rural communities. This study
examined what individuals in both rural and urban com-
munities of a Southeastern state know and think about CTs.
Nineteen focus groups and eight interviews were conducted
statewide with a total of 212 men and women. Discussions
assessed participants’ beliefs, perceptions, and sources of
information about CTs, and their willingness to participate
in a CT. Focus group and interview transcripts were ana-
lyzed qualitatively for themes. Urban and rural participants
expressed similar beliefs about CTs. Common mispercep-
tions were that CTs were intended for people who could
not afford care and that completing a survey or partici-
pating in a focus group constituted a CT. Rural residents
believed that CTs involved deception more often than
urban residents, and they were less willing than urban
residents to participate in a CT in the future. Urban
residents more frequently discussed their distrust of the
medical system as a reason for not wanting to participate.
Many individuals expressed that their participation would
depend on whether their doctor recommended it or whether
the trial would benefit a family member’s health. Findings
have important implications for health communication.
Messages should be developed to address misperceptions
of rural and urban communities and convey the importance
of CT participation to promote and protect the health of
their communities.
Keywords Clinical trials � Rural populations � Research
participation � Perceptions � Qualitative
Introduction
Clinical trials (CTs) are biomedical or health-related
research studies using human volunteers designed to add to
medical knowledge. In a CT, participants receive a specific
intervention based on a predetermined protocol [1]. There
are five types of CTs: prevention, screening, diagnostic,
treatment, and quality of life. Trials exist for many types of
diseases and health conditions, including diabetes, cancer,
HIV/AIDS, and asthma [2]. CT research can provide the
most advanced medical treatments and screening options to
eligible participants [1, 3], including medically under-
served individuals living in rural communities [1, 3].
Despite the many benefits of CTs, participation remains
low among rural residents [4–8]. Barriers to participation
include poor understanding of the need for CTs, lack of
knowledge about available trials, and concerns about par-
ticipation costs and insurance coverage [9, 10]. Individuals’
perceptions about medical research also play an important
role in CT participation [9, 11, 12]. Some common
D. B. Friedman � C. D. Bergeron
Department of Health Promotion, Education, and Behavior,
Arnold School of Public Health, University of South Carolina,
Columbia, SC, USA
D. B. Friedman (&)
Core Faculty, Statewide Cancer Prevention and Control
Program, Arnold School of Public Health, University of South
Carolina, 915 Greene Street, room 235, Columbia, SC 29208,
USA
e-mail: [email protected]; [email protected]
C. Foster � A. Tanner � S.-H. Kim
School of Journalism and Mass Communications,
University of South Carolina, Columbia, SC 29208, USA
123
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DOI 10.1007/s10900-013-9659-z
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misperceptions include the belief that participants will be
treated like guinea pigs and the belief that participants will
receive a placebo instead of treatment [12, 13, 14].
People’s perceptions and knowledge about CTs may
vary by geographic location. For example, individuals
living in rural communities may be unaware of care options
like CTs in their area. Rural residents report poorer health
than those in more urban areas [15]; they may have lower
health literacy, engage in less healthy behaviors, and lack
access to health care and preventive services [16], limiting
their awareness and knowledge about the benefits of CTs.
The purpose of this study was to explore what individ-
uals in both rural and urban communities of a Southeastern
state know and think about CTs. A greater understanding of
communities’ perceptions about CTs can help identify
specific barriers to participation, improve researchers’ and
health care professionals’ communication and promotion
of CTs, and potentially increase underserved communities’
participation in medical research. This study is unique
because it is the first, to our knowledge, to examine and
compare the perceptions of rural and urban residents about
medical research. We recognize that urban and rural
communities have different health needs and may face
different barriers to CT participation. We therefore address
this gap in the literature by comparing urban versus rural
perceptions about CTs.
Methods
Participant Recruitment
Participants were recruited for focus groups and interviews
to explore and compare rural and urban South Carolinians’
current beliefs and perceptions about CTs, their sources of
information about CTs, and their willingness to participate
in medical research. African-American (AA) and white
men and women, ages 21 and older, were recruited from
rural and urban counties across the state. Recruitment flyers
were distributed at community health clinics, physicians’
offices, libraries, churches, businesses, government agen-
cies, and nonprofit organizations. The research team also
partnered with community leaders who helped advertise
the study, assisted with the recruitment process through
word of mouth and flyer distribution, and hosted focus
groups or interviews at their churches or local community
centers.
Focus Group/Interview Protocol
Nineteen focus groups and eight interviews were conducted
statewide with a total of 212 participants. One-on-one
telephone or in-person interviews were employed to
accommodate some participants’ work schedules. Focus
groups and interviews ranged in length from 90 to 120 min.
Within four rural counties, six focus groups and seven
interviews were conducted; in four urban counties 13 focus
groups and one interview were conducted. Questions on the
discussion protocol were based on health and CT infor-
mation from prior qualitative research [17, 18] and from
the national ClinicalTrials.gov website. Responses to the
following discussion questions are reported in this paper:
• When you hear the term ‘clinical trials,’ what comes to
mind?
• Have you, or anyone you know, ever participated in a
clinical trial? Who participated in the trial? What was
the trial for?
• Have you heard about clinical trials for a specific
disease? Please tell us what you know about these
trials.
• Why do you think clinical trials and other types of
medical research are conducted? What are the benefits
of clinical trials?
• Who have you talked to about possibly participating in
clinical trials? Who, if anyone, helped you decide
whether or not to participate in a clinical trial?
• If you haven’t participated in a clinical trial before,
would you be willing to participate in the future? Why
or why not?
For each focus group session, a moderator and note-
taker were present. Race concordance between the mod-
erator and focus group participants was ensured and cul-
turally appropriate language was used. All focus groups
and interviews were audio-recorded and professionally
transcribed. To protect participant confidentiality, personal
identifiers were removed from the transcripts prior to
analysis.
Participants also were given a 17-item survey with
questions on demographics (e.g., sex, race, employment,
marital status, income), current sources of health and
research information, and previous participation in CTs.
Following the discussion, participants were provided with a
$30 participation incentive. All study protocols were
approved by the university’s Institutional Review Board.
Analysis
Focus group and interview transcripts were uploaded and
organized into NVivo� 10 [19], a software program for
organizing and categorizing qualitative data. A codebook
was developed by three members of the research team
using open coding [20]. During the open coding process,
two of the authors independently coded four transcripts
(one rural white male group, one urban white male group,
one rural AA male group, one rural AA female group)
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using the discussion guide as an initial framework. Fol-
lowing this initial coding process, authors discussed the
codes until they reached consensus on the meaning of each
code [21]. Based on this discussion, a comprehensive
codebook was developed and all transcripts were coded.
Axial coding, the process used to identify thematic rela-
tionships between codes, followed [20, 21]. Finally, coders
used a constant comparison process in which themes were
compared and contrasted across groups (i.e., urban vs.
rural) [20]. Demographic survey data were entered into
SPSS� 20.0 [22] and analyzed using nonparametric fre-
quencies, percentages, and crosstabs.
Results
Participant Demographics
Demographic and information-seeking characteristics of
participants by focus group/interview location (urban vs.
rural) are shown in Table 1. A total of 212 individuals [160
urban (117 AA, 43 white), 52 rural (41 AA, 11 white)]
participated in a focus group or interview; 196 of these
participants, ages 21-81 (mean age: 45.3, ?/- 14.6)
completed our survey. Of the 196 participants, 75 (38.5 %)
were employed full time, 32 (16.4 %) worked part time, 69
(35.4 %) were unemployed, and 19 (9.7 %) were retired.
Most participants had annual incomes below $20,000
(n = 106/194 or 54.6 %) or between $20,000 and $39,000
(n = 38/194 or 19.6 %). Fifty-six of 194 participants
(28.9 %) were high school graduates or had obtained a
General Educational Development (GED) certificate; 53
(27.3 %) had some college or technical training; and 61
(31.4 %) had obtained bachelors or graduate degrees.
Eighty-two (41.8 %) were single or never married; 60
(30.6 %) were married, 43 (21.7 %) were separated or
divorced, and 8 (4.1 %) were widowed.
The majority of participants (79.4 %) reported receiving
health information from their physician. Other frequently
reported sources included television (n = 141/195 or
72.3 %), Internet (n = 106/195 or 54.4 %), family mem-
bers (n = 82/194 or 42.3 %), and magazines (n = 75/195
or 38.5 %). Nearly 46 % (n = 84/184) indicated that they
were somewhat interested in participating in a clinical trial
in the future; 28.3 % (n = 52) were very interested;
15.8 % (n = 29) were extremely interested; and 10.3 %
(n = 19) were not at all interested.
A significantly greater percentage of rural participants
reported using the Internet as a main source for health
information compared with urban participants (70.8 vs.
49.7 %; x2 = 6.533, df = 1, p = .008). A marginally sig-
nificant difference was found between urban and rural
residents’ interest in participating in a CT in the future
(x2 = 7.57, df = 3, p = .056). Rural participants were
much less likely than urban residents (25.6 vs. 48.9 %) to
report being extremely or very interested in participating in
a CT.
Qualitative Themes
Themes were categorized as follows: (1) beliefs and per-
ceptions of CTs; (2) perceived benefits of CTs; (3) sources
of CT information; and (4) participation in medical
research. Representative quotes from participants are pre-
sented to support these findings. Table 2 provides a list of
themes and subthemes ranked according to how frequently
they emerged in rural and urban focus groups and
interviews.
Beliefs and Perceptions About Clinical Trials
Regarding participants’ beliefs and perceptions about CTs,
a number of subthemes emerged related to general
awareness about CTs, knowledge about specific types of
CTs, misperceptions about research participation, and
knowledge about family and friends’ participation in
research. Most participants in both rural and urban areas
had heard the term ‘clinical trials’ and had a general idea
that it was related to medical research. Representative
quotes from participants included: ‘‘[A clinical trial is]
medication that will help people overcome their sickness’’
(urban AA male) and ‘‘I think of some type of medical
testing. In general, I think of one group that will use a pill,
for example, as taking a medicine. The other group is
taking a placebo and they’re testing to compare to see if the
drug actually works’’ (rural white male).
Few participants mentioned CTs for disease prevention
and discussions focused on treating and finding cures for
diseases. One urban white male stated, ‘‘Could it be also
maybe to find the cause of a disease…just not only the
anecdote but a cure for it…or maybe where it comes from
…or how?’’ An urban white female participant com-
mented, ‘‘I don’t know, if it’s not broken, don’t fix it kind
of thing. I’ve never heard of a preventative one, though. I
don’t know what they would be preventing.’’
Some participants acknowledged that there were many
different types of CTs. For example, ‘‘When you say
clinical, medical is the first thing that comes to mind, but
there are all sorts of different trials within clinical such as
psychiatry and psychology. It’s not just always medicine or
actual drugs’’ (urban AA female). One rural white female
participant commented that people in her community
probably did not know about CTs: ‘‘I just think a lot of
people don’t even know what clinical trials are or that there
are people out there wanting to conduct them and they need
subjects. I don’t think people know that.’’
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When asked what type of CTs they had heard about,
participants in urban focus groups most often mentioned
trials for treating cancer, followed by substance abuse and
obesity. Diabetes was also mentioned, but less frequently.
Rural participants most often mentioned trials for treating
substance abuse such as alcoholism. White participants
most often mentioned trials focused on cancer treatment;
AA participants mentioned they had heard about clinical
studies on substance abuse.
The majority of participants had some misperceptions
about CTs. First, participants associated CTs with being
sick and did not think that trials existed for healthy indi-
viduals. One urban female participant stated, ‘‘You have to
have something wrong with you to where that medication
will fit to help you.’’ Some participants, especially those in
urban areas, believed that CTs were only available to poor
people who needed medical care, stating, ‘‘When I think of
clinical trials I automatically think of people who need the
money’’ (urban white male) and ‘‘I think about it as when
you are really down on your luck you can become a human
lab rat’’ (urban white woman). A rural AA male stated,
‘‘Well, the majority of the time you find a person partici-
pating in a clinical trial, like you’re talking about now, [it]
is somebody that’s looking for some monetary mad
money.’’
Many participants also believed that they had partici-
pated in a CT because they had completed a survey in their
Table 1 Participant demographics by location (urban vs. rural),
N = 196
Demographics Urban
(n = 148)
Rural
(n = 48)
Age
Age range 21–72 21–81
Mean age 45.9
(SD = 13.35)
43.6
(SD = 17.80)
Total Na = 148 Total N = 48
Gender
Male 74 (50.0 %) 17 (35.4 %)
Female 74 (50.0 %) 31 (64.6 %)
Total N = 148 Total N = 48
Race
African American 82 (65.6 %) 38 (80.9 %)
White 40 (32.0 %) 9 (19.1 %)
Hispanic 2 (1.6 %) 0
Other 1 (0.8 %) 0
Total N = 125 Total N = 47
Employment
Full-time 54 (37.2 %) 21 (43.8 %)
Part-time 22 (15.2 %) 10 (20.8 %)
Retired 11 (7.6 %) 7 (14.6 %)
Not employed 58 (40 %) 10 (20.8 %)
Total N = 145 Total N = 48
Household income before taxes
Less than 20,000 87 (59.6 %) 17 (37.0 %)
20,000–39,000 25 (17.1 %) 13 (28.3 %)
40,000–59,000 7 (4.8 %) 10 (21.7 %)
60,000–79,000 2 (1.4 %) 3 (6.5 %)
80,000–99,000 9 (6.2 %) 3 (6.5 %)
Over 100,000 16 (10.9 %) 0
Total N = 146 Total N = 46
Education
Less than high school 20 (13.8 %) 2 (4.3 %)
High school graduate or GED 49 (33.8 %) 7 (14.9 %)
Some college 34 (23.4 %) 19 (40.4 %)
Bachelor’s degree 24 (16.6 %) 10 (21.3 %)
Advanced/graduate degree 18 (12.4 %) 9 (19.1 %)
Total N = 145 Total N = 47
Marital status
Single/never married 59 (40.4 %) 23 (47.9 %)
Married 37 (25.3 %) 22 (45.8 %)
Separated 14 (9.6 %) 0
Divorced 27 (18.5 %) 1 (2.1 %)
Widowed 7 (4.8 %) 1 (2.1 %)
Other 2 (1.4 %) 1 (2.1 %)
Total N = 146 Total N = 48
Source of health information(select all that apply)
Physician 113/144 (78.5 %) 40 (83.3 %)
Television 104/145 (71.7 %) 35 (72.9 %)
Internet* 72/145 (49.7 %) 34 (70.8 %)
Table 1 continued
Demographics Urban
(n = 148)
Rural
(n = 48)
Family member (not spouse) 61/144 (42.4 %) 19 (39.6 %)
Magazines 54/145 (37.2 %) 21 (43.8 %)
Radio 46/145 (31.7 %) 20 (41.7 %)
Newspapers 52/145 (35.9 %) 19 (39.6 %)
Friends or coworkers 43/145 (29.7 %) 14 (29.2 %)
Brochures 42/145 (29.0 %) 20 (41.7 %)
Books 42/145 (29.0 %) 17 (35.4 %)
Spouse 32/145 (22.1 %) 11 (22.9 %)
Pastor 20/145 (13.8 %) 5 (10.4 %)
Total N = 144
or 145
Total N = 48
Willingness to participatein a clinical trial
Not at all interested 14 (10.1 %) 5 (11.6 %)
Somewhat interested 57 (41.0 %) 27 (62.8 %)
Very interested 43 (30.9 %) 7 (16.3 %)
Extremely interested 25 (18.0 %) 4 (9.3 %)
Total N = 139 Total N = 43
* p \ .05a Total Ns represent the number of participants who responded to each of
the survey questions
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doctor’s office or agreed to be in a focus group like the
ones being conducted for the current study. One urban AA
male explained it like this: ‘‘Basically you have three types
of … clinical trials. The first one is a survey. The second
one is the medical side. The third one is the therapy side,
which is doing the exercising and all that.’’
Participants expressed fear and uncertainty about par-
ticipating in CTs because they thought that researchers
often ‘‘deceive people’’ into participating in ‘‘experi-
ments.’’ As explained by a urban white male, ‘‘The word
‘clinical trial’ sounds like something where they lock you
in a room with these guys in white coats, and they strap you
down, and they stick something in your arm … We’re
gonna get you. We’re gonna lock you up in a room for a
week.’’
Very few individuals had ever participated in a CT or
knew of a family member or friend who had participated in
one. One woman spoke about her son’s experience: ‘‘When
my oldest son was in the second grade, he stood up against
a heater and his shirt caught on fire and his back was
burned and he was taken to the burn center. When we got
there, they asked us if he could be part of some research
they were doing on two different types of coverings they
put over burns. So I guess this would’ve been a clinical
trial’’ (urban white female). Urban participants reported
more often that friends as opposed to family members had
participated in CTs.
Both white and AA participants in urban and rural areas
were very weary of medical research. A representative
participant quote was, ‘‘I’ve thought about it, but I asked
my parents. I was like, ‘Do you think I should do this?’ and
they’re like, ‘No, don’t do it. It’s scary. It’s sketchy’’
(urban white female). Some AA participants mentioned the
Tuskegee syphilis study and how it influenced their per-
ceptions of medical care and research. For example, ‘‘You
know, most black people don’t want to be in a trial because
of what they did at Tuskegee University when they gave
the black people syphilis’’ (urban AA male).
Perceived Benefits of Clinical Trials The major subthe-
mes that emerged regarding participants’ perceptions of the
benefits of CTs were: to advance medicine, to conduct
research, and to save lives. The benefit mentioned most
often by both urban and rural participants was that CTs
advanced medicine. ‘‘Cause you have to advance medicine
over time. You can’t just stay with the same medicine for
hundreds of years like we’ve had’’ (urban white female)
and ‘‘To find maybe like—maybe new cures or new solu-
tions to certain diseases or diagnoses, like new medica-
tions’’ (rural AA female). One female participant
mentioned that advancing the science through CTs would
contribute to her own health and wellbeing: ‘‘So I think
that, the sense that you’re gonna help medical improve-
ments and hopefully help yourself medically’’ (rural white
female).
The general importance of conducting medical research
was mentioned almost equally by urban and rural partici-
pants; however, among rural groups, it was discussed less
than advancing medicine. Participants confirmed that
conducting research was a benefit of clinical trials: ‘‘It’s
needed for better understanding of what they’re studying,
as far as helping people … medications and things, and
help, you know, a cure for [a disease]’’ (urban AA male)
and ‘‘They can’t base all the research on mice or some
other kind of animal. It’s gotta be tried on somebody’’
(urban white female).
Table 2 Frequency of mention and ranking of focus group/interview
themes and subthemes
Themes and subthemes Focus group/
interview
location
Urban Rural
1. Beliefs and perceptions of clinical trials
Limited awareness 1 1
Misperceptions about clinical trials
Only for treatment 3 4
For people who cannot afford care or need money 1 1
Includes focus group & survey research 2 2
Often involves deception 4 3
Knowledge about other people’s participation in
clinical trials:
Family 2 1
Friends 1 2
2. Benefits of clinical trials
To advance medicine 1 1
To help further research 2 2
To save lives 3 3
3. Sources of clinical trials information
Limited communication from doctors 2 1
Limited trust in health care providers/health care
system
1 2
Media & Organization Sources Mentioned
Television 1 2
Medical centers 2 1
Newspapers 3 3
Radio 4 4
Internet 5 5
4. Willingness to participate in medical research,e.g., clinical trials
Yes 2 3
It depends/Maybe 1 1
No 3 2
Subthemes of each major theme are ranked separately. Major themes
only display a ranking if they have no subthemes
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The idea that CTs could potentially save lives was
mentioned less often than other benefits. Very few white
participants, in particular, mentioned that saving lives was
a benefit of participating in a CT. Individuals who did
stressed that CTs could help find a cure for diseases and
save people’s lives: ‘‘But I told her, I said, you know, you
never know what could come from this study. It could be
the cure … or something that could change millions of
people’s lives’’ (rural AA female) and ‘‘It could—you
know, they could—by testing it and following up with
people, could be trying to figure out exactly how it’s
working through the body and then finding out information
like that, finding out if it works, you know, saving lives’’
(urban white male).
Sources of Clinical Trial Information
Participants also discussed their CT communication through
their health care providers and CT information they received
from the health care system, mass media, and specific
medical centers. Major subthemes related to participants’
sources of CT information were: lack of patient-provider
communication about CTs, limited trust in health care pro-
viders and the health care system, limited or inaccurate
messages about CTs in the media, and unclear promotion of
CTs by health care organizations and medical centers.
Doctors are not Telling Patients About Clinical Tri-
als The majority of both rural and urban participants
commented that they did not learn about CTs from their
health care providers. For example, ‘‘Most times we go to
the VA, they don’t never mention anything about the
clinical study or anything. They just treat you for what
you—what you on—they treat you for that particular
problem, and that’s it. Tell you what you can do to resolve
it or slow it down, whatever’’ (rural AA male). Some
participants believed this was the case because providers
did not have the time to speak with them about opportu-
nities for participating in medical research. For example,
Participant: There are times when I just don’t—I’d
rather not mention it to him and just go and get some
examination to see if they can determine if whatever I
feel is wrong.
Moderator: Right. So you feel like that you might not
have time in the very little bit of time the doctor has
to spend with you to talk about something like that?
Participant: I have the time. The doctors don’t. (rural
AA male)
Other participants believed that providers did not rec-
ommend CTs to them because they did not endorse them.
For example,
Participant: Some of our doctors are against it and
won’t do it, so I think it just kinda depends on—I
don’t know.
Moderator: Won’t do it or they specifically have
decided not to do it or they aren’t aware of them or
you don’t know?
Participant: No, they don’t—they don’t advertise for
it. You know what I mean? They don’t encourage
patients to do them. (urban white woman)
Limited Trust in Health Care Providers and the Health
Care System Although most participants listed their
doctor as their most frequent source of health information
on the pen and paper questionnaires and in focus groups/
interviews, many participants, especially those in urban
areas, mentioned that they did not completely trust their
providers. One urban AA male expressed, ‘‘I have trust in,
you know, the medical field, my doctors, to a degree. I
know that any of us that get sick, we should do our own
research and ask questions, to ask the doctor when we go,
not just depend on the doctor to, you know, tell you
everything that you may want him to tell you.’’ In AA
focus groups, in particular, participants discussed their
distrust of medical professionals:
I’d be willing to bet you that if you had a show of
hands, the vast majority of people in here have heard
a family member or said it themselves, I don’t trust
doctors, and wouldn’t go to a doctor. My dad, my
uncles, a lot of people in my family. I mean, they’d
have to be literally real sick before they even go see a
doctor. …especially in the black community. There’s
just distrust of doctors (urban AA male).
On the other hand, some participants said that they
might be interested in participating in a CT if their doctor
had recommended one to them: ‘‘… if he [doctor] recom-
mends it. I trust his judgment more than seeing a flier on
the street, ‘cause then I have no idea—even if it says Dr.
So-and-So or like Such-and-Such Research Company is
doing this, it’s still a little bit more sketchy’’ (urban white
female). A rural AA female participant stated that she
would only participate in a CT if the provider clearly
explained the process to her: ‘‘As long as they don’t speak
Italian to me. You know doctors have a tendency to use
their training and they can’t get around their training lan-
guages sometimes’’ (rural AA female).
Urban participants, who were mainly AAs, also dis-
cussed more frequently than rural participants their distrust
of the medical system as a reason why they may not want
to participate in a CT. An urban AA male expressed, ‘‘It’s
like this, okay? I have a family member that at the time did
not have good health insurance. We’re going to the
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hospital, and they told him that he was experiencing gas
pain. Later, we went to another hospital, and they told him
he had a mild heart attack. Now I don’t trust the system that
determines whether or not I’m sick based on whether or not
I got insurance. That’s my opinion.’’
Clinical Trials Advertised in the Media and by Health Care
Organizations Both rural and urban participants
remarked that they had seen advertisements for CTs mainly
on television, followed by radio, newspapers, and the
Internet. However, the Internet was not often mentioned by
rural participants, and some participants expressed that
they did not see CTs advertised in any type of media. ‘‘In
general I would say that I don’t really see a lot of requests
to be in clinical trials. That may be more of a reflection of
the fact that I don’t watch a lot of television and I’m not
looking in the right magazines’’ (rural white female).
Participants also commented that the media did not
provide complete information about CTs. The ads partici-
pants did see were mainly for new medication. ‘‘Like all
the TV shows are giving a bad rep of clinical trials anyway,
but they never show clinical trials as a prevention or as a
quality of life or stuff that does not require you to, like, put
any kind of medication inside of you’’ (urban AA female).
Rural participants mentioned learning about CTs from
specific medical centers (e.g., hospitals and community
health clinics) more often than hearing about them from the
mass media. Medical centers also were mentioned more
often in AA groups than in white groups. For example,
‘‘It’s all over the hospitals. I volunteer at [a hospital] and
you know, there is - you can always get your hand on a
piece of paperwork that says something about a clinical
trial whether it’s already had the clinical trial or whether
it’s coming up’’ (urban white female) and ‘‘I know there
are a couple of health clinics around my community back
at home. I know they inform about clinical trials. … I’m
pretty sure you could go there and ask them how you could
sign up and what’s the proper procedure to go about it …’’
(rural AA male).
Willingness to Participate in a Clinical Trial
The majority of both rural and urban participants said ‘‘it
depends’’ when asked if they would be willing to partici-
pate in a CT in the future. Very few white participants
reported that they definitely would or would not partici-
pate; AAs’ responses were more evenly distributed across
the three options of ‘yes’, ‘no’, and ‘maybe’. Participants
said if their doctor recommended a CT they would consider
it. For example, ‘‘Yeah, if my family doctor told me to do it
because she’s really conservative and she really looks at
things, if she said to do it, I’d do it’’ (urban white female).
Some participants were still unclear about what CTs
entailed as was evident from this representative quote:
‘‘Sure. I don’t see why not. Now when you say participate
in a trial that means take some kind of medication?’’ (urban
AA male).
Participants said they would need to know specific
details about the trial before consenting to participate:
‘‘Yes, probably so. Again, depending on hearing more
about it and wanting to know lots of details before I
committed to it, but yes, theoretically I would be’’ (rural
white female). Some participants said they would partici-
pate in a trial if it benefitted their health, while others stated
they would think about participating if the research bene-
fitted the health and wellbeing of their family members. ‘‘If
you had some family members with cancer and you’re
looking for something because you want to try something
new that could possibly work. Then yes, I definitely
would,’’ (rural white female) and ‘‘If one of my daughters
was sick or dying with something, and they had a trial for
it, I would take that trial to save—to try to save my
daughter’s life’’ (urban AA male).
A number of participants still felt uncomfortable with
the idea of participating in a CT. They expressed concern
about being treated like a ‘‘guinea pig’’ and were nervous
about potential negative side effects resulting from CTs.
Urban participants said, ‘‘I just—to me, I just—I’m not
comfortable with being the lab rat, so to speak. You know?
And I would think, you know, in most cases, that’s how
most people would feel,’’ (urban AA male) and ‘‘I’m not
gonna participate—if it don’t apply to me, if it’s not for any
condition I have, I’m not gonna participate in it, because
you can have all sorts of side effects—uh-uh. No thank
you’’ (urban AA female).
Discussion
This in-depth qualitative study explored the perceptions,
sources, and participation in CTs of AA and white men and
women in both urban and rural areas of South Carolina.
Our findings suggest that both urban and rural residents
have limited awareness of CTs. This finding is consistent
with other studies [11, 13, 23, 24].
Both urban and rural participants expressed similar
beliefs about CTs. Some commonly mentioned misper-
ceptions were that CTs are for people who cannot afford
care or need money, and that CTs involved deception by
researchers in an effort to get participants to take part in
their ‘‘experiments.’’ Financial incentives are shown to
encourage participation in CTs [25–27], and these incen-
tives are often included in promotional materials and
advertisements associated with CTs. Thus, it makes sense
that participants in the current study believed that people
who participate in CTs are in need of money. The
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perception that CT researchers would deceive their par-
ticipants, most often mentioned by rural residents, was also
a key issue in a study by Fouad et al. [14], which examined
minority recruitment in medical research. Such misper-
ceptions may be fueled by a lack of knowledge and
understanding about CTs [9, 23, 28]. In the current study,
lack of knowledge about CTs was demonstrated by par-
ticipants who thought that completing a survey or partici-
pating in a focus group was a CT. This finding is
particularly interesting because it is one that is not com-
monly cited in the literature.
In terms of sources of information about CTs, our
findings suggest that there may be limited communication
from doctors to patients in general, and about CTs in
particular, in both urban and rural areas of the state. It is
possible that health care providers do not have information
about CTs or are not recommending this option to their
patients. Other research has demonstrated that physicians
failed to discuss the option of participating in a CT with
their patients [29–33]. The limited amount of time physi-
cians spend treating each patient may help to explain the
lack of communication about CTs.
Urban participants conveyed a greater lack of trust in
health care providers and the health care system than rural
participants. This may be due to the fact that rural-dwelling
individuals may not have a primary care physician and may
have difficulty evaluating this trust [34, 35]. Despite the
lack of trust among urban groups, these participants still
rated physicians as their main source of health information
on the demographics survey. This finding needs further
exploration.
Another intriguing finding is that within the focus
groups, rural participants rarely mentioned using the
Internet to search for health information; however, a great
percentage of rural participants (70.8 %) compared with
urban participants (49.7 %) indicated using the Internet as
their main source of health information on the survey. This
finding may be explained by the fact that the survey, which
was administered prior to the group discussions, may have
been perceived as referring to general use of the Internet
rather than the specific use of the Internet to obtain health-
related information.
After learning about CTs during the focus groups, both
urban and rural participants still often mentioned they
would be unwilling to participate in a CT in the future.
Many stated that their participation would depend on
whether their doctor recommended it or if it could benefit a
family member’s health. Rural participants mentioned
more often than their urban counterparts that they would
not be interested in participating. This is consistent with
other research [4] as well as our survey results indicating
that only 25.6 % of rural participants (compared with
48.9 % of urban participants) were either very interested
or extremely interested in participating in a CT in the
future.
Limitations
It is important to note the limitations of this study.
Although this research provides a comprehensive qualita-
tive examination of CT perceptions in both rural and urban
areas with over 200 individuals, because of the unbalanced
participant numbers in rural (n = 48) and urban (n = 148)
counties, our findings should not be generalized beyond
this population. Volunteer-based convenience samples are
not representative of entire populations; however, it was
not intended for these qualitative research findings to be
generalized to all AAs and whites in rural and urban
counties in the state or other regions of the country. Finally,
while both AA and white men and women were included in
this study, this paper did not compare and contrast themes/
subthemes by gender or age. Instead a broader examination
of CT perceptions by geographic location (i.e., urban vs.
rural) was conducted for the purposes of this research. To
our knowledge, this is the first comprehensive formative
study in the southern U.S. to compare urban and rural
populations’ perceptions about CTs.
Conclusions and Implications
While CT participation is lower among rural communities
[4, 7], this in-depth qualitative analysis showed that both
urban and rural groups had limited knowledge and
awareness about CTs. Education is therefore needed
throughout the state about what constitutes a CT and about
other common misperceptions about CTs, including that
they are only for people who cannot afford care or need the
money, that they are only conducted to treat disease, and
that they involve deception. Education has been shown to
be effective in recruiting and retaining participants for all
types of CTs [4, 11, 36, 37]. Such community-based out-
reach and awareness campaigns should deliver messages
through the channels that participants mentioned using
most often for health information including physicians,
television, and the Internet.
Study findings have important implications for public
health communication. Since participants stated that they
would be willing to participate if the CT would benefit a
family member, educational messages describing the var-
ious benefits most salient to potential participants need to
be developed and tested. Messages should also address the
misperceptions mentioned by rural and urban participants
and convey the importance of participating in CTs to
promote and protect the health of their communities.
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While participants reported obtaining limited informa-
tion from their physicians about ongoing medical research,
they stated that they would be more willing to participate in
a CT if their doctor recommended it. This presents an
opportunity to develop a training program for health care
providers on how to communicate to their patients about
CTs [38] and involve providers in a potential educational
campaign about CT research [29, 39]. Future research
should also examine local providers’ knowledge of ongo-
ing CTs and how CT investigators can best communicate
this information to these providers.
Acknowledgments Research funded by Health Sciences South
Carolina. We are grateful to Dr. Jay Moskowitz, Dr. Amy Brock
Martin, our community partners, and focus group and interview
participants.
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