J Community Health (2012) 37:59–64

DOI 10.1007/s10900-011-9416-0

ORIGINAL PAPER

Reported Benefits of Participation in a Research Study

Anabella G. Castillo • Lina Jandorf •

Linda D. Thélémaque • Sheba King •

Katherine Duhamel

Published online: 5 June 2011

Ó Springer Science+Business Media, LLC 2011

Abstract Racial and ethnic minorities are significantly Keywords Minority groups
Clinical trials,
underrepresented in clinical research trials. Several socio- randomized
Participation
Colonoscopy
cultural and systemic barriers, ranging from discrimination
by the health care system, medical mistrust, to low physi-
cian referral rates and lack of knowledge of research Introduction
studies have been identified as impacting participation. One
hundred and fifteen participants were culturally matched According to 2000 census data, the United States (US) was
and were interviewed followed by up to an additional four home to approximately 281,421,906 [1] uniquely diverse
interviews over a 12 month period. Responses were ana- individuals. Racial/ethnic minorities comprised 31% of the
lyzed to understand the perceived benefits to participating total US population and that percentage continues to grow
in a prospective, randomized, longitudinal clinical research [1]. This diversity is what in essence makes this country a
trial about screening colonoscopy. Over two-thirds (64.4%) multicultural mosaic. East Harlem (EH), the study site,
of participants reported ‘‘knowledge, awareness, and/or located in New York City (NYC), provides an example of a
information about colonoscopy and general health’’ as metropolitan area highlighting the changing face of the US
being the greatest benefit they received. Desire to undergo According to the New York City Department of Health and
the screening and the pride of completing the study was Mental Hygiene (DOHMH), 108,100 people resided in EH in
ranked second and third, respectively. Understanding the 2000 [2]. Racial/ethnic minorities comprised 93% of the
reasons that participants choose to participate in research total population [2]. In comparison to NYC residents overall,
studies will ultimately assist researchers close the gap in EH residents face many barriers to healthcare access, such as
minority representation, allowing for greater generaliz- high poverty (40% of its residents live below the poverty
ability of research findings. level) and uninsured rates (30%) [2]. According to a report by
the Institute of Medicine, disparities within healthcare are
defined as racial, ethnic, and/or socioeconomic differences in
A. G. Castillo
L. Jandorf (&)
L. D. Thélémaque
Mount Sinai School of Medicine, 1425 Madison Avenue, the quality of healthcare, and frequently associated with
Box 1130, New York, NY 10029, USA negative health outcomes [3]. Many of these existing
e-mail: [email protected] healthcare disparities, as well as certain health behaviors
L. D. Thélémaque stem from events, both historic and social, as well as eco-
e-mail: [email protected] nomic inequalities deeply rooted within minority commu-
nities. As a result of these lingering and silent events, illness
S. King
Mount Sinai School of Medicine, 1425 Madison Avenue, and diseases which don’t necessarily have to be fatal often
Box 1130, Room 270, New York, NY 10029, USA are, tearing families as well as communities apart.
There are numerous preventable diseases that affect
K. Duhamel
ethnic minorities in a disproportionate way; colorectal
Memorial Sloan Kettering Cancer Center, 641 Lexington
Avenue, 7th floor, New York, NY 10022, USA cancer (CRC) is a prime example of such an illness. While
e-mail: [email protected] CRC is the second leading cause of cancer-related deaths in

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the US, routine screening can save lives [4]. It is estimated research, the use of standard recruitment methodology may
that 51,370 CRC deaths were expected to occur in 2010 not always be sufficient.
[4]. According to the US Multi-Society Task Force Gilliss et al. [19] identified many strategies that can
(USMSTF) guidelines, there are a variety of options for increase recruitment rates across racial backgrounds. The
CRC screening, beginning at the age of 50 [5]. However, authors found that the most successful strategy for
colonoscopy is considered the gold standard of CRC recruiting African Americans, in comparison to non-
screening since it allows for the removal of cancerous and Hispanic European Americans and Mexicans/Central
pre-cancerous polyps, thereby preventing CRC [6–8]. Americans, was face-to-face recruitment. The Midlife
When pre-cancerous polyps are removed early, it results in Women’s Health Study, a 5-year longitudinal study con-
a significant decrease in the likelihood that a patient will ducted by Kennedy et al. [20] looked at the menopausal
develop CRC. Furthermore, according to the National transition of women of all races. The investigators used
Polyp Study (1993), which compared patients completing a specific strategies to recruit African American and
colonoscopy in which one or more polyps were removed, Mexican/Central American women, including culturally
showed the use of colonoscopy reduced the incidence of matched recruiters [20]. When recruiting African American
CRC by 76–90% [9]. A study conducted by Jones and women into the study, face-to-face recruitment was found
colleagues concluded that only 61% of US adults C to be the most effective, resulting in 79% enrollment.
50 years report having had any type CRC screening Similarly, matching participants and recruiters according to
recently [10]. However, many individuals, particularly age, gender, and particularly race, resulted in an effective
minorities, remain non-adherent to colonoscopy (the gold recruitment approach in studies conducted by Gavalier
standard); only four out of 10 EH resident over the age of 50 et al. and Blumenthal et al. [21, 22]. Several studies also
have had a screening colonoscopy within the last 10 years indicate that culturally matching participants with recruit-
[2]. This finding needs to be viewed in light of the fact that for ers plays an important role in increasing research partici-
African Americans (in the present study African Americans pation [14, 19]. In 1999, Moorman et al. [23] undertook the
includes Black Americans), the overall incidence of CRC is Carolina Breast Cancer Study, a comprehensive case–
approximately 22% higher compared to their Caucasian control study calculating rates of contact (defined as the
counterparts. Taking these differences into consideration the ability to reach and inform a participant about the study)
American College of Gastroenterologist (ACG) put forth and cooperation (defined as the ability to reach, inform and
recommendations specific for African Americans to be enroll participant in the study), which examined age, race
screened starting at the age of 45 using colonoscopy as the of participant, and race of interviewer. Cooperation rates
preferred method of screening [11, 12]. among African American women increased when the
According to the National Institutes of Health (NIH) interviewer was also African American. A 15% increase in
minorities are also continuously underrepresented in participation among young African American controls was
research [13]. When comparing non-Hispanic Blacks with noticed as well as a 6% increase in young African Amer-
non-Hispanic Whites, lower participation rates in clinical ican cases. Furthermore, there was a 15% increase in par-
trials have been seen [13]. Several barriers have been put ticipation among older African American cases and a 14%
forth affecting the recruitment and retention of minority increase in older African American controls. Even though
populations in research. Socio-cultural barriers to minority the interviewer’s first contact with the participant was over
participation in research include past or present discrimi- the phone, the participants’ decision of whether or not to
nation within the health care system, mistrust, suspicion participate in the study was presumed to be based on the
and thoughts of exploitation, ill treatment, fears or con- perceived race of the interviewer based on language pat-
cerns about safety, and study requirements [14]. Lack of terns and accent. These studies demonstrate the positive
knowledge or awareness about research, low rates of impact that the culturally matching of recruiters has had on
physician referral, time or interference with work, family, recruiting African Americans and increased participation,
or personal responsibilities, and transportation are addi- possibly relaying a message of the importance of the study
tional barriers which contribute to the lack of participation to women of their same race and may also play an
and sample retention [15]. Furthermore, many studies important part in overcoming fear or mistrust [23].
suggest that the Tuskegee Syphilis Study, being one Truly understanding the need to increase minority par-
example of an unethical study which was conducted on ticipation in health research is essential for identifying,
almost 400 African American men from 1932 to 1972, left addressing, and overcoming existing health disparities [13].
a profound level of fear and distrust towards research Moreover, in order to achieve adequate representation of all
within the African American community particularly groups in health research, it is essential to understand the
among the older generation [16–18]. Therefore, in order to reasons which serve to motivate or deter participants, par-
obtain an appropriate representation of ethnic minorities in ticularly ethnic minorities, from participating in research.

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Previous studies conducted by Gysels et al. [24], Tolmie During the final assessment, approximately 12 months
et al. [25], James et al. [26] and Gilliss et al. [19] have following the baseline interview, participants were asked
mentioned the following reasons for participating in a ‘‘What are you most proud of regarding your participation
research study: altruism, concerns about care, the need to talk in the study?’’ These open ended responses were coded to
to someone, and/or the need for information or access to assess what benefits participants received by participating
services. While the motivation to participate in research in the study. Initially, the responses were coded into nine
may initially be out of curiosity, once enrolled, personal different categories: (1) can share information with others,
benefit and altruistic motives may supersede the reason (2) helping others, (3) realized people care, (4) knowledge
[25]. James et al. [26], conducted a study looking at the or awareness about colonoscopy and general health, (5)
perceived barriers and benefits to CRC screening among proud of participating and completing study, (6) educa-
African American church members in North Carolina. The tional material and information, (7) want to have the test,
results concluded that having had a colonoscopy was (8) talking about it and (9) other. Two separate coders
positively associated with greater perceived benefits. sorted the responses and were instructed that responses
Additionally, Good et al. [12] conducted a qualitative study could fit into multiple categories if applicable; differences
in central Virginia, which sought to identify and describe were then compared. Given some ambiguity amongst some
the different barriers which prevent African Americans of the categories, these categories were further sorted into
from obtaining CRC screening. The results of this study three broader groups: External Benefit (EB), Internal
indicated the need to increase outreach and education about Benefit (IB), or Other, depending on the type of benefit the
the topic of CRC screenings as well as its availability. participant received by participating in the study. EB is
While there are numerous reasons why a person decides to defined as benefits which affect other people, IB is defined
participate and/or refuse to participate in research studies, as benefits which affect ‘‘self’’ as a result of one’s action,
the current study examines the benefits participants have and Other, incorporates all other responses. After revising
actually experienced, which, in turn, can lead to a better the categories, the responses were coded once again by two
understanding of more effective ways to recruit more separate coders and reviewed for consistency. A committee
ethnic minorities in future studies. was assembled to discuss any discrepancies after the sec-
ond round of coding, which was then finalized. The final
six categories are shown in Table 1.
Methods

The IRB-approved prospective, randomized, longitudinal Results

clinical trial parent study was designed to investigate the
effectiveness of different print educational brochures in This paper reports on the 115 participants (of the initial
reducing African Americans’ perceived barriers and 159) who completed a 12-month follow-up interview. The
increasing their adherence to CRC screening recommen- overall retention rate (defined as completing at least one
dations [27]. Participants were culturally matched with an other interview post-baseline, excluding the 2 week follow-
African American interviewer, who conducted the baseline up interview) for the study period. 140 of the 159 parent
and up to four follow-up interviews (2 weeks, 3, 6, and study participants meet this retention definition resulting in
12 months) throughout the 12-month study period. The a 88.1% retention rate. As seen in Table 2, the majority of
2-week follow-up entailed a review of study materials and 115 participants for the present study were between the
was not considered to be a full follow-up assessment. ages of 50–55 (54.8%), female (73.9%), and were not

Table 1 Benefit categories

Title Category Example

1. Helping others and sharing information with others External ‘‘That I gave information that might help other people’’
2. Knowledge, awareness and/or information about Internal ‘‘I got the understanding about colonoscopy, the purpose of having it; it
colonoscopy and general health; talking about it did me a lot of good. I’m educated about it.’’
3. Proud of participating and completing study Internal ‘‘The fact that I participated!’’
4. Educational materials received (brochure) Internal ‘‘The information I was given, I would have never thought about having
it otherwise’’
5. Wants to have the test or had test Internal ‘‘That everything is satisfactory, I’m happy I had the procedure done.
I feel great, looking forward to having it done again’’
6. Other Other ‘‘The fact that everything was good’’

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Table 2 Overall patient demographics Table 3 Reported benefits of participation

Variable N= %= Responses N* %*

Mean age (SD) Helping others and sharing information 13 11.02

50–55 63 54.8 with others
56 and up 52 45.2 Knowledge, awareness and/or information 76 64.41
about colonoscopy and general health
Gender
Proud of participating and completing study 19 16.10
Male 30 26.1
Educational materials received (brochures) 7 5.93
Female 85 73.9
Wants to have the test 32 27.12
Marital status
Talking about it 17 14.41
Married or live with partner 32 27.8
Not married 83 72.2 * N and % do not total 100 as responses are not mutually exclusive
Education
Less than high school 33 28.7 encompassed statements such as ‘‘Proud of participating in
High school, GED or vocational 33 28.7 a study that may help people of color get proper health,
Some college or greater 49 42.6 and alleviate fears. Helps doctors be more in tune to the
Income ($) health of people of color’’. These responses all form part of
Less than 10,000 51 45.1 the Internal Benefits category. Responses could fall into
10,000–25,000 39 34.6 more than one category; therefore responses are not
Greater than 25,000 23 20.3 mutually exclusive.
Employment status
Employed 14 12.2
Not employed 101 87.8 Discussion

Understanding the benefits which participants experienced

and the reasons which motivated a participant to enroll in a
married (72.2%). Most participants had some college research study is not only of great importance, but essential
education or greater (42.6%), had an annual income less if we as a society are to move forward and benefit from
than $10,000 (45.1%), and were not employed (87.8%). research for the good of all communities.
When comparing the demographics of participants who This study was successful in a number of ways. First, we
completed the 12-month interview and those who did not; gained better insight of what benefits the participants felt
there was only one statistically significant (P = 0.012) they received as a result of enrolling and participating in
difference. Participants who were married/partnered were this study. Although these benefits were primarily indirect
more like to complete the 12-month interview then those for the participant, the statements participants provided
who were not married/partnered. indicate the importance of such benefits to them. Benefits,
As stated earlier, the primary goal of this analysis was to such as a sense of empowerment, as well as an increase in
understand the benefits participants reported experiencing knowledge that came about as a result of the study, may lead
as a result of their participation in the research study. to better health advocacy, study participation and outcomes.
Table 3 depicts the frequency within each of the six This can be seen by statements such as ‘‘It was an oppor-
response categories stated by the participants. The greatest tunity to get information and enlightened me on things
benefit participants reported was ‘‘Knowledge, awareness, I didn’t know about and it is a constant reminder to get the
and/or information about colonoscopy and general health’’ test done’’. This sense of empowerment does not only serve
by almost two-thirds of the respondents (N = 76, 64.4%). as an indirect benefit to the participant, but indirectly, can
Statements such as ‘‘The study has enlightened me about also aid in bridging the existing health disparity gaps.
the colonoscopy and importance of taking the test and it Moreover, increased knowledge is a benefit that is often
encouraged me to take the test. The research gave me more under emphasized during time of recruitment and enroll-
insight.’’ were the most common types of response within ment into research. Although an increase in knowledge can
that category. Followed by statements such as ‘‘The be easily quantified by the use of pre/post tests, within the
information that I have received about my health and context of this qualitative study its effects are also reflected
things I should be doing to improve my health. I am going within the statements provided by the participants.
to get the colonoscopy done’’ were categorized under Knowledge is a powerful tool, not only is it beneficial for
‘‘Wants to have the test’’ (N = 32, 27.1%). ‘‘Proud of the participant, but it has also been linked to an increase in
participating and completing the study’’ (N = 19, 16.1%) positive attitudes and behaviors [12, 16, 26, 27].

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Acknowledgments This project was supported by Grant R01 Epidemiology, 10(8 Suppl), S13–S21.
CA104130-01 from the National Cancer Institute. The authors would 16. Woods, V. D., Montgomery, S. B., & Herring, R. P. (2004).
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