African American women and clinical trials: perceived barriers to participation and potential solutions.
Objectives: Lack of minority participation in clinical trials is a
public health concern in the United States due to significant health
disparities within the minority community. This qualitative exploratory
study examined barriers that prevent African American women from
participating in clinical trials.
Methods: Twenty-nine female African Americans participated in four focus groups. Responses were coded and themes were identified using the data.
Results: Five major factors affected participation in clinical trials: (1) fear; (2) mistrust of the medical community; (3) lack of knowledge about clinical trials; (4) misinformation; and (5) past history/negativity surrounding clinical trials. Participants suggested four strategies to enhance participation: (1) educate and inform participants and young people in schools about clinical trials and the research process prior to and throughout participation in the study; (2) utilize professionals considered trustworthy; (3) consider diversity among professionals; and (4) make concerted efforts to invite African Americans to participate in clinical trials by conducting outreach.
Conclusions: African American female participation in clinical trials is influenced by several factors. Overcoming these barriers will require collaboration among healthcare professionals to educate participants about clinical trials as well as significant community outreach.
Brooks, Monique M.
Paschal, Angelia M.
Sly, Jamilia R.
|Publication:||Name: American Journal of Health Studies Publisher: American Journal of Health Studies Audience: Professional Format: Magazine/Journal Subject: Health Copyright: COPYRIGHT 2009 American Journal of Health Studies ISSN: 1090-0500|
|Issue:||Date: Spring, 2009 Source Volume: 24 Source Issue: 2|
|Topic:||Event Code: 331 Product development|
|Product:||Product Code: 8010000 Medical Personnel; 8000200 Medical Research; 9105220 Health Research Programs; 8000240 Epilepsy & Muscle Disease R&D; 8000120 Public Health Care; 9005200 Health Programs-Total Govt; 9105200 Health Programs NAICS Code: 62 Health Care and Social Assistance; 54171 Research and Development in the Physical, Engineering, and Life Sciences; 92312 Administration of Public Health Programs; 923 Administration of Human Resource Programs|
Despite the plethora of medications presently available for the treatment and prevention of numerous diseases and disorders, there continues to be high and even increasing rates of illness, disability and death, particularly among minority populations. Specifically, African Americans have disproportionate rates for at least six of the ten Leading Health Indicators of Healthy People 2010, including having less access to health care and immunization and a greater prevalence of obesity, injury, tobacco use, and risky sexual behavior (U.S. Department of Health and Human Services, 2004).
Despite the increased prevalence of disease and death among African Americans, African American participation in clinical trials is low (Harris, Gorelick, Samuels, & Bempong, 1996; Corbie-Smith, Thomas, Williams, & Moody-Ayers, 1999; Dennis & Neese, 2000). This troubling lack of minority participation in clinical trials will likely contribute to higher rates of morbidity and mortality among minorities due to incomplete information (Harris, Gorelick, Samuels, & Bempong, 1996; Dennis & Neese, 2000; Evelyn et al., 2001), having an adverse effect on several initiatives aimed at eliminating healthcare disparities amongst minorities. Medication is a central aspect in treating many health conditions. Since patient response to medication can differ by race, ensuring representative participation in clinical trials is an issue of great concern (El-Sadr & Capps, 1992).
In order to understand what should be done to increase African American participation in clinical trials, the issue must first be understood from the African American perspective. Several studies have examined African Americans' attitudes and beliefs regarding their participation in clinical research (Harris, Gorelick, Samuels, & Bempong, 1996; Corbie-Smith, Thomas, Williams, & MoodyAyers, 1999; Shavers, Lynch, & Burmeister, 2001; Calderon et al., 2006; Linden et al., 2007; Moutsiakis & Chin, 2007; Smith et al., 2007; Braunstein, Sherber, Schulman, Ding, & Powe, 2008). Studies have demonstrated that participants feared clinical trials; subjects were afraid they would be treated like "guinea pigs" (Harris, Gorelick, Samuels, & Bempong, 1996; Braunstein, Sherber, Schulman, Ding, & Powe, 2008), (though some research has suggested that this fear may be more pronounced among Whites than African Americans (Katz et al., 2008)). Participation was also negatively affected by mistrust of the medical system, economic factors, a lack of awareness of clinical trials, and miscommunication (Braunstein, Sherber, Schulman, Ding, & Powe, 2008). Moreover, subjects felt that African Americans were not recruited in a proper manner (Harris, Gorelick, Samuels, & Bempong, 1996).
The current study examined existing barriers preventing African American women from participating in clinical trials. Focus groups were conducted to evaluate participants' knowledge and history of participation in clinical trials, determine barriers to participation, and assess strategies for recruiting and retaining participants. The current study differs from previous investigations that (1) used other research methods such as surveys (Braunstein, Sherber, Schulman, Ding, & Powe, 2008; Shavers, Lynch, & Burmeister, 2001) or telephone interviews (Shavers, Lynch, & Burmeister, 2001), (2) were disease specific (Braunstein, Sherber, Schulman, Ding, & Powe, 2008; Linden et al., 2007; Moutsiakis & Chin, 2007) or designed to address a specific purpose (e.g., being focused on enrollment and participation in a Women's Health Registry (Smith et al., 2007)), (3) were conducted in larger metropolitan areas (Calderon et al., 2006; Shavers, Lynch, & Burmeister, 2001; Smith et al., 2007) or another part of the country (Calderon et al., 2006; Linden et al., 2007). In addition, the current study considered the wider history of African American participation in clinical trials (e.g., knowledge of the Tuskegee Syphilis Study (Shavers, Lynch, & Burmeister, 2000)) and whether that history had a negative effect on current trends in African American clinical trial participation. Finally, this study focused on examining the perspectives of women in the African American community.
Flyers were distributed at various sites to recruit women from a regional Midwestern area. Community referrals were also used in recruitment. The 29 participants who responded to recruitment efforts were then divided into four structured focus groups of African American women. Eligibility requirements included being female, African American, and at least 18 years of age.
The women were diverse in terms of age, marital status, and residence within and between each focus group (see Table 1). The first group consisted of five participants at a women's shelter located in Kansas City, Missouri. The second focus group, conducted in an individual's house in Olathe, Kansas, was comprised of five professional women working at the United States Food and Drug Administration (FDA). The third focus group had seven women who were all were members of the Eastern Star, an international religious fraternal order, and took place at a house located in East St. Louis, Illinois. The final focus group, consisting of 12 members from the same congregation, was held at a church in Kansas City, Missouri.
The format for the focus groups consisted of a brief welcome followed by an introduction of the facilitator, also an African American female. Demographic information for participants was obtained via a brief, anonymous intake questionnaire administered prior to the focus group. The questionnaire gathered information on age, marital status, education level, number of children, annual household income, and city of residence. During the focus group, the facilitator asked predetermined questions (Table 2), clarified information when necessary, and helped guide discussion. Each focus group lasted on average 1.5 hours.
With the participants' consent, the focus group sessions were audio-taped and later transcribed verbatim. Responses to the interview questions were coded and themes were identified from the data. Following data collection, the frequency of demographic characteristics and like responses from the focus groups were computed by using Microsoft Excel XP 2002 database, version 5.1 (Microsoft Corporation, Redmond, WA).
PERCEPTIONS OF CLINICAL TRIALS
Knowledge of others' experiences with clinical trials played an important part in shaping participants' views and beliefs regarding clinical trials. Table 4 presents participant responses to focus group questions. Of the 29 women who participated in the focus groups, 27 had never participated in a clinical trial. Eleven (37.9%) of the 29 women did, however, know a family member or friend who had participated in a clinical trial. Lack of personal participation primarily stemmed from concern about being "experimented" on, a word mentioned by almost half of the participants. Along the same lines, "guinea pig" and "research" were the second most commonly mentioned words (each being stated six times). Participants expressed concern about being treated as "test objects" or "test animals," as has been the case in history, and made reference to the Tuskegee Study. One participant reported that she participated in a study but quit one month later due to several negative side effects. There were no group differences in perceptions of clinical trials.
IMPORTANCE OF CLINICAL TRIALS
Despite their fears about being treated experimentally, approximately 79.3% of the participants felt that clinical trials and medical research was important or necessary. Even though the majority of participants recognized the importance of clinical research, some of them readily admitted a lack of knowledge about clinical trials. Encouragingly, many of the women still expressed an interest in being educated about clinical trials.
In addition, focus group members not only recognized the importance of clinical trials, but also saw immediate benefits to participation. Among these were increased medical knowledge (55.2%), free healthcare for the participant (20.7%), and monetary compensation (13.8%). The importance of clinical trials was most obvious among women in the professional group.
KNOWLEDGE OF CLINICAL TRIALS BEING OFFERED
Responses also indicated that most of the participants, regardless of group, had never even been invited to participate in a clinical trial, despite the majority having received care in a physician's office. Of the 29 participants, only five (17.2%) reported being asked to participate in a clinical trial. These women were approached in a physician's office, hospital, or clinic, while one subject responded to a newspaper advertisement. Four of the previous clinical trial participants said that they did not refuse to participate in the clinical trial, while the fifth had not yet decided at the time of this study whether or not she would participate. Another participant said that her physician asked her to participate but failed to follow-up later with her.
BARRIERS TO PARTICIPATION
The primary barriers to participation that were identified in this study included fear of being treated like a "guinea pig" (31.0%), mistrust (17.2%), and side effects from the drugs (17.2%). Other barriers included misinformation, perceived incompetence of health care professionals, insufficient time for participation, unknown effectiveness of medication, and lack of monetary compensation. Nevertheless, three participants stated that they perceived no barriers to participation.
Fear of being mistreated in a clinical trial was the most commonly expressed concern, and historical cases fueled their resistance. Race was another major factor in participants' negative attitudes about participating in clinical trials. Participants maintained that the care of African Americans is not equitable compared to that of Whites in clinics and emergency departments. Additionally, a general mistrust of medical researchers was discussed among some participants. While individuals in Focus Group 2 ("professional group") reported less concern about unfair treatment, all of them reported they had never been offered a free sample of medication from their physicians, something they found odd. The above perceptions and experiences may have created feelings of distrust and disillusionment of the medical community among this population.
Participants believed racial and ethnic diversity among researchers and clinicians would help to enhance participation. Still other reasons participants would not take part in clinical trials included previous experiences of family or friends and religious beliefs. Some individuals believed they should rely on God instead of scientists' "experiments."
Nonetheless, most participants said they would consider participating in a clinical trial. Seven participants (24.1%) stated they would not participate in a clinical trial, and two reported that they would do so only in a "life or death" situation.
STRATEGIES TO RECRUIT AND RETAIN PARTICIPANTS
Despite reservations, 14 participants (48.3%) said they would participate in a clinical trial (six were unsure). Influential factors in participation included family or personal relevance of the study (20.7%) and the opportunity to help others (13.8%). Additionally, some said they would participate if the case was a matter of life and death (13.8%) or if they would be kept well-informed (6.9%). Several participants wanted to be aware of the final use of information and medication. Three participants (10.3%) maintained that they would participate even without any of these factors present. Instead, the above factors might simply serve as incentives for participating in clinical trials, along with assurances of free medication, competence of healthcare professionals, and active involvement in the study.
Participants also discussed key points to increasing minority participation in clinical trials. Providing sufficient information and education about clinical trials was a very common recommendation (44.8%). Participants also reported incentives and the extension of an invitation as factors to increase minority participation in clinical trials. Additionally, some participants were concerned about the "greed" of researchers or funders. They responded that if the financial factor, or the "money equation," was removed for the researchers, the true purpose and design of the study would emerge and this knowledge would be beneficial for the general population.
The findings of this study indicate an immediate need for intervention to promote African American participation in clinical trials among researchers, healthcare professionals, and public health representatives. Results support previous research that suggests lack of clinical trial participation among African American women is influenced by fear (Harris, Gorelick, Samuels, & Bempong, 1996), mistrust of the medical community (Braunstein, Sherber, Schulman, Ding, & Powe, 2008; CorbieSmith, Thomas, Williams, & Moody-Ayers, 1999), lack of education or misinformation about clinical trials, (Corbie-Smith, Thomas, Williams, & Moody Ayers, 1999; Moutsiakis & Chin, 2007), and past history and negative associations regarding clinical trials (Shavers, Lynch, & Burmeister, 2001, 2000).
African American participation in clinical trials is vital to assess and secure specific outcomes regarding the safety and effectiveness of medications used by the African American population, particularly given the existence of widespread health disparities (U.S. Department of Health and Human Services, 2004). It is imperative that research and health institutions intervene and collaborate to address African American concerns prior to and during recruitment. The process of addressing recruitment and retention concerns must first begin in healthcare institutions or health delivery facilities during routine treatment and follow-up visits. Specifically, this includes providing adequate treatment based on continual healthcare needs demonstrated in African American communities. Potential avenues for recruitment could include outreach within African American communities, greater exposure for clinical trials provided through community members, and individual invitation from a researcher to participate.
Participants in this study felt that researchers should provide options and act as advocates. In light of the information provided by the participants, researchers must consider the manner in which they conduct their studies, recruit participants, and interact with them. Cultural sensitivity classes would be beneficial for researchers and healthcare providers in the recruitment and retention of participants. There is evidence that participants who partake in or conclude a study with poor experiences are likely to share those negative experiences with family and acquaintances (Shavers, Lynch, & Burmeister, 2001, 2000).
Again, it is worthwhile to note that almost half the individuals studied were willing to participate in a clinical trial. This finding agrees with recent research, which indicates that minorities in the United States are as willing as Whites to participate in health research (Wendler et al., 2006). In fact, participants saw knowledge (55.2%) and free healthcare (20.7%) as beneficial outcomes of participating in a clinical trial.
This study has several potential limitations. First, response bias was a concern since members of each focus group knew each other. Participants could have possibly responded in a manner they deemed desirable based on established relationships. However, relationships between focus group members were most likely beneficial to the study since the women were already comfortable talking to each other in a group forum. Furthermore, this study demonstrates the importance of establishing contacts and rapport with the community prior to conducting research, which in this case may have contributed to the abundance of information gathered during the focus group discussions.
In addition, the knowledge level of the participants may have affected the outcomes of the study. Some participants did not understand the true meaning of clinical trials. For example, one participant thought by participating in a clinical trial all participants' rights are given up. These limitations notwithstanding, this data will be a valuable addition to current knowledge.
Finally, the study's geographical location in the Midwest limits its generalizability among the entire African American population. However, in one study conducted in the South, responses from female African American participants were similar to those discovered in this study (BeLue, Taylor-Richardson, Jin, Rivera, & Grandison, 2006).
It is also important to note that as the current study focused on African American women, results might not be generalizable to all African Americans. Additional studies are needed to determine trends and patterns within the African American population and between different population subsets. However, by virtue of shared experiences and lifestyles between African American women and men, the study data may also be useful in the effort to understand barriers to African Americans' participation in clinical trials.
The present study builds on existing literature by adding similar and varying perspectives to the ongoing problem of low participation in clinical trials among African Americans (Harris, Gorelick, Samuels, & Bempong, 1996; Corbie-Smith, Thomas, Williams, & Moody-Ayers, 1999). Yet in contrast to former research, the present study's criteria for participation did not limit participants to a specific disease (Roberson, 1994; Advani et al., 2003; Adams-Campbell et al., 2004; Newman et al., 2006) and most participants had never participated in a clinical trial. Unlike previous studies examining minority participation in clinical trials (Roberson, 1994; Baquet, Commiskey, Mullins, & Mishra, 2005; Wendler et al., 2006), the current study collected data through focus groups. This allowed for the collection of comprehensive, detailed information that uncovered barriers and perceptions from the participants' perspectives rather than by deriving conclusions from narrow responses to surveys. Focus groups also enabled participants to identify strategies and solutions by which individuals can become more involved in the clinical trial process.
African American female participation in clinical trials is influenced by fear, mistrust of the medical community, lack of education about clinical trials, misinformation, and past history. Overcoming these barriers will require collaboration among healthcare professionals to educate participants about clinical trials as well as significant outreach in this community. This study underscores the importance of minority participation in clinical trials, specifically African Americans. It also provides African Americans' views, past and present, about participating in clinical trials. It is imperative that research and health institutions collaborate and intervene to address African American concerns immediately and prior to recruitment. In addition, the results of the study indicate cultural sensitivity classes would be beneficial for researchers and healthcare providers in the recruitment and retention of participants.
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Monique M. Brooks, BSN, MPH is affiliated with University of Kansas, School of Medicine-Wichita. Angelia M. Paschal, PhD, MEd is affiliated with University of Kansas, School of Medicine-Wichita. Jamilia R. Sly, MA is affiliated with University of Kansas, School of Medicine-Wichita. Tracy Hsiao, MS is affiliated with University of Kansas, School of Medicine - Wichita. Please address all correspondence to Angelia M. Paschal, Department of Preventive Medicine and Public Health, University of Kansas School of Medicine-Wichita, 1010 N. Kansas, Suite 1300, Wichita, KS 67214; Phone: 316-293-3500; Fax: 316-293-2695; Email: email@example.com.
Table 1. Characteristics of Focus Group Participants ALL PARTICIPANTS Frequency Percent Age range 18-30 4 13.8 31-40 5 17.2 41-50 4 13.8 51-60 4 13.8 61-70 7 24.1 71 & > 5 17.2 Marital status Never married 7 24.1 Married 7 24.1 Widowed 5 17.2 Separated 3 10.3 Divorced 7 24.1 Education level Some high school 4 13.8 High school graduate 6 20.7 Trade school 2 6.9 Some college 9 31 Associate degree 2 6.9 Bachelor's degree 2 6.9 Master's degree 3 10.3 Doctoral degree 1 3.4 Annual household income (a) Less than 10,000 10 34.5 10,000-20,000 3 10.3 21,000-30,000 2 6.9 31,000-40,000 5 17.2 41,000-50,000 2 6.9 51,000-60,000 1 3.4 61,000-70,000 1 3.4 71,000 and above 4 13.8 Primary setting for receiving healthcare Physician's office 20 69 Health clinic/department 9 31 Participated in a clinical trial (a) Yes 1 3.4 No 27 93.1 (a). Total does not equal 29 because 1 participant did not complete this question. Table 2. Focus Group Questions 1. "What comes to mind when you hear the words, "clinical trials"? 2. Have you ever participated in a clinical trial or a medical research study? 3. Have you ever been asked to participate in a clinical trial? If so, in what setting (e.g. healthcare) were you asked? 4. (For those who refused to participate in a clinical trial) Why did you refuse to participate in a clinical trial? 5. How do you feel about clinical trials or medical research? 6. Have you ever had family or friends participate in a clinical trial(s)? 7. What are the benefits to participating in a clinical trial(s)? 8. Identify specific barriers that would keep you from participating in clinical trials. 9. Would you ever participate in a clinical trial? Why or why not? 10. Would you participate in a clinical trial if you were asked? Why or why not? 11. What would convince you to participate in a clinical trial? 12. Why do you think your race does not participate in clinical trials? 13. What cultural influences do you believe affect whether your race participates in clinical trials? What are they? 14. What would increase minority participation in clinical trials? Table 3. Barriers to Participation in Clinical Trials 1. Fear of being treated as an experiment 2. Mistrust of researchers and the medical community 3. Side effects from drugs 4. Misinformation and lack of knowledge of clinical trials 5. Past history and negativity surrounding clinical trials 6. Perceived incompetence of healthcare professionals or researchers 7. Insufficient time to devote to participation 8. Lack of monetary compensation Table 4. Strategies to Enhance Minority Participation 1. Educate participants before and during clinical trial 2. Educate children about medical research while still in school 3. Promote diversity and cultural sensitivity among researchers 4. Extend invitations to participate 5. Recruit through community outreach Table 5. Selected Responses from Focus Groups Participants Previous participation in clinical trials "Yes, I have high blood pressure, but I didn't finish... It was making me feel too funny. Instead of staying with the study, they kept changing it. Yeah, they were paying me, but I said forget this money. Ain't going to do me no good dead." "Basically, I think because we were never asked before. They mostly ask the Whites and the other races. They probably think it wouldn't do any good to ask us anyway." Participants' knowledge of clinical trials "It is necessary for treatment that's done for people. If you don't participate, you will never know whether it would or would not help somebody." "I don't know too much about [clinical trials], but I've heard of free drugs and money." Barriers to participation "Past history. Tuskegee experiment. Do you think black folks are going to jump up and do this after what has happened in the past?" "There is a more recent case where they treated minority foster kids with the AIDS virus ... This is in 2004 and 2005 ... It happened in Chicago and Ohio. The researchers did not go through proper procedures and get permission. It was on the TV and the newspaper." [Another participant had also heard of the case with the foster children]. "Mistrust. There's not enough knowledge about the process, how data will be utilized and who's behind the research, who is funding it? Mistrust of funders and people conducting the study." "If people want to get out there and do this, then let them do it ... I was in prison. It's a lot of people dying in prison from down there from nurses giving the wrong medication ... Then the thing that they do when they do this kind of stuff is they want to turn off the phones. They do not want nobody to call these people's family members. So what are y'all trying to hide? ... That's why I do not trust doctors." "No, I do not believe in physicians. I believe in the Master [referring to God]." Strategies to recruit and retain participants "Education has to start at an early age. You have to constantly stress the benefits of it ... You must have exposure from blacks who have already participated in studies."
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