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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: dfriedma@mailbox.sc.edu; dbfriedman@sc.edu

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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