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© 2006 American Public Health Association
DOI: 10.2105/AJPH.2005.072801
PUBLIC HEALTH MATTERS |
Anthony J. Silvestre is with the Graduate School of Public Health, University of Pittsburgh, Pa. John B. Hylton, Lisette M. Johnson, and Lisa Jacobson are with the Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Md. Carmoncelia Houston is with the Ruth M. Rothstein CORE Center, Chicago, Ill. Mallory Witt is with the David Geffen School of Medicine, University of California, Los Angeles. David Ostro is with David Ostrow & Associates, Village of Lakewood, Ill.
Correspondence: Requests for reprints should be sent to Anthony J. Silvestre, PhD, 3520 Fifth Ave, Suite 400, Pittsburgh, PA 15213 (e-mail: tonys{at}stophiv.pitt.edu).
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ABSTRACT |
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 TOP ABSTRACT INTRODUCTIONDISTRUST AS A BARRIER...BACKGROUNDRESULTSCONCLUSIONSReferences |
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We describe the efforts of a 4-city campaign to recruit Black and Hispanic men who have sex with men into an established HIV epidemiological study. The campaign used community organizing principles and a social marketing model that focused on personnel, location, product, costs and benefits, and promotion. The campaign was developed at the community, group, and individual levels to both increase trust and reduce barriers.
The proportion of Hispanic men recruited during the 2002–2003 campaign doubled compared with the 1987 campaign, and the proportion and number of White men decreased by 20%. The proportion of Black men decreased because of the large increase in Hispanic men, although the number of Black men increased by 56%.
Successful recruitment included training recruitment specialists, involving knowledgeable minority community members during planning, and having an accessible site with convenient hours.
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INTRODUCTION |
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TOPABSTRACTINTRODUCTIONDISTRUST AS A BARRIER...BACKGROUNDRESULTSCONCLUSIONSReferences |
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Race/ethnicity and gender affect the outcome of drug and behavioral interventions. These variables directly or indirectly influence adherence, access to care, differential exposure to health risks, and health risks. Toigo et al. reviewed 185 drug trials, 8% of which found differences associated with race/ethnicity.1 In more than half of the 50 clinical trials that Svensson reviewed, Blacks were underrepresented.2 Swanson’s review of more than 100 clinical trials reported shortcomings in subject recruitment and obstacles to effective minority recruitment.3
HIV/AIDS studies have shown the impact of race/ethnicity, sexual orientation, and gender on prevention interventions, risk behaviors, access to care, and drug treatment research.3–7 Minorities are not only more disproportionally infected by HIV but also less likely to participate in HIV studies. Since the beginning of the pandemic, Blacks and Hispanics have been disproportionately affected by HIV/AIDS. Over time, the disproportionate representation of minorities among newly diagnosed HIV infections has grown. In 2003, 38% of all reported AIDS cases were Black and 18% were Hispanic.8 Furthermore, Blacks may be particularly underrepresented in HIV experimental drug trials; in 1995, Diaz et al. found that Blacks were less likely than Hispanics and Whites to be recruited into such trials.9
The Multicenter AIDS Cohort Study (MACS) recently completed a successful 4-city campaign to recruit Black and Hispanic men who have sex with men (MSM) into an established HIV epidemiological study that first recruited a mostly White study population in 1984 and 1985. Although some researchers have sampled hard-to-reach populations,10–16 and others have successfully recruited these populations,17,18 little systematic research that compares the effectiveness of various recruitment techniques has been done. MACS used various recruitment methods, which are described in this article.
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DISTRUST AS A BARRIER TO PARTICIPATION |
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TOPABSTRACTINTRODUCTIONDISTRUST AS A BARRIER...BACKGROUNDRESULTSCONCLUSIONSReferences |
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Research has shown that minority communities have a low level of trust in government officials and researchers.19–25 According to Thomas and Quinn, the distrust generated by the Tuskegee Syphilis Study lent credibility to the view that HIV is a pathogen that was created by the government to destroy the Black community.26,27
Long before the Tuskegee study, slaves were used for experimentation in medical schools and hospitals. Without family permission, the bodies of slaves were often dissected and used for teaching purposes and for promulgating theories about their physical and mental inferiority.28–30 Female slaves were used in experiments of various surgical interventions.31 Decades after slavery, Puerto Rican women were encouraged to be sterilized as a method of population control.32 Blacks were deliberately infected with granuluma inguinale so that the course of this sexually transmitted disease (caused by the organism Calymmatobacterium granulomatis) could be followed and various drugs could be tested.33 Because Black and Hispanic men and women are disproportionately represented among prisoners, they were often coerced to participate in trials within the context of an unequal power relationship. In the 1950s and 1960s, inmates of Holmesburg Prison in Pennsylvania participated in numerous experiments, some of which introduced herpes and genital warts into prisoners. Other experiments exposed them to extreme temperatures and radioisotopes.34 More recently, Black and Puerto Rican boys aged 6 to10 years were allegedly given fenfluramine, a now-banned drug, to study the association between levels of brain chemicals and criminal behavior.35
The extent of the association between actual knowledge of unethical or questionable conduct and decisions about whether to participate in a study remains unknown. However, distrust does exist. In a study of Blacks’ attitudes toward participation in HIV research, Sengupta et al. found that mistrust of researchers and the government must be addressed before or at the same time as other barriers to participation in research are addressed.36 Previous mistreatment must be acknowledged rather than avoided, and the need for the contemplated research must be fully explained.36–40 Anticipating feelings of distrust and addressing them in the study design may increase the credibility of the researcher’s proposed work.
Mistrust among minority communities exists at 3 levels: community, group, and individual. It plays out differently at each level, and it has to be effectively addressed at all 3 levels before successful recruitment can occur.
Other Barriers
In addition to distrust, researchers have identified other important barriers to participation in research, including transportation problems and interference with work, especially among those who have 2 or more jobs.40,41 People who have low literacy levels,42 live in poverty,43 and engage in same-sex relationships44 face other powerful barriers. Additional barriers include low priority of the planned research, inadequate incentives,37 fear of giving away rights by signing consent forms,45 lack of cultural sensitivity among research staff,27 unstable housing,3 not understanding research terms and language,23 and lack of respect from researchers.46,47
Specific Recruitment Issues Among MSM
Black and Hispanic MSM are marginalized in both the lesbian, gay, bisexual, and trans-gender (LGBT) community and the Black and Hispanic communities.48–51 Minority MSM have many reasons for hiding their sexual orientations and behaviors. A Black self-identified gay grandfather, who was a consultant at one of our sites, would not enter our building until all of the city buses had gone by for fear of being seen by someone who knew him and who might have known that our study was housed in that building. Many churches, including Black and Hispanic churches, condemn same-sex sexual behavior. At the same time, segments of the LGBT community do not welcome minority persons who self-identify as LGBT. Furthermore, middle-class minority MSM who may be expected to take leadership roles on HIV-related issues within their communities often do not, perhaps fearing it would raise questions about their sexual orientation. One Black self-identified gay college professor expressed his strong personal support for our recruitment effort, but he declined to enroll or publicly endorse the study for fear of jeopardizing his ties with a Black professional network. In small towns and cities, many minority MSM are only informally connected and have not created organizations. Thus, recruiting minority MSM into HIV research requires addressing fear, isolation, distrust, and confidentiality.
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BACKGROUND |
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TOPABSTRACTINTRODUCTIONDISTRUST AS A BARRIER...BACKGROUNDRESULTSCONCLUSIONSReferences |
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MACS is a long-term study of the natural history of HIV infection among a cohort of approximately 5000 HIV-infected and noninfected men in Baltimore, Md/Washington, DC; Chicago, Ill; Los Angeles, Calif; and Pittsburgh, Pa. The initial participants were recruited in 1984 and 1985.52 The semiannual study visit includes a self-administered questionnaire, an interview, and a computer-assisted questionnaire that collect data on sexual behavior, drug and alcohol use, medical history, medications, depression, and quality of life. Occasionally, site-specific or visit-specific data also are collected. Blood collected at each visit is used to test HIV antibodies, liver function, kidney function, cholesterol and triglycerides levels, electrolyte levels, complete blood count, blood clotting, and viral load (among those who are positive) and to screen for diabetes and hepatitis A, B, and C. Men also are given physical exams. Other data are acquired with several methods, including scannable forms, computer-assisted forms, electronically received test results, and hardcopy test results that are manually entered into computer databases. After data entry, software programs edit the data for integrity and consistency. Every 6 months, the data are submitted to the MACS data-coordinating center.
During 1984 and 1985, MACS initially recruited a cohort that included some minority MSM. In 1987, there was a second recruitment to replace the large numbers of men who had died. Neither recruitment targeted specific numbers of minority men. In 2000, when MACS expanded its scientific focus, additional study participants were needed. The rising toll of HIV among minority MSM combined with strong direction from the National Institutes of Health (NIH) resulted in recruitment efforts that focused on minority MSM. Each site developed its own recruitment plan, and the principal staff responsible for recruiting at each site met early in the effort to discuss and compare plans. Key points that were raised included getting community members to support and participate in the recruitment effort, establishing convenient clinic sites, using culturally competent staff, identifying barriers (costs) and facilitating factors (benefits), and establishing trust.
The recruiters agreed to prepare an article about their experiences. An interview schedule was circulated and revised by the recruiters, staff at each site were then identified for interviews, and 12 interviews were conducted after recruitment was completed. Notes from the interviews were used to organize the article, which was circulated among the recruiters for comment and revision. The experiences of the 4 sites are presented here in a systematic way that may provide a framework for other recruitment efforts that target minority men.
Developing the Campaign
Each site developed its recruitment plan on the basis of (1) its experience with the targeted populations and (2) formative data gathered by staff and community members. It is important that data from the targeted community be gathered in a systematic way. Researchers’ judgments about the characteristics of the people who should be hired, the location of clinic sites, the incentives to be offered, and the barriers to be reduced must be determined on the basis of data from the targeted community and not on the basis of staff beliefs. Community advisory boards at each site played major roles in the development and implementation of plans. The importance of these boards cannot be overstated. As both Strauss et al.53 and Quinn54 stated, community advisory boards play a major role in protecting both individual participants and the broader community during research endeavors. Community advisory boards help build greater trust between community members and researchers. They can provide insight, information, and advice; identify potential staff; and increase credibility within the community. Furthermore, board members can use their positions within the community to provide mechanisms that establish trust, identify barriers, and assist recruitment (e.g., providing speaking opportunities at group meetings, printing newsletter articles, and making personal contacts with potential study participants).
Multiracial community advisory boards that were established at each site during the early 1980s played a key role in developing the 2000 recruitment drives. The boards included formal and informal leaders and allies of the local MSM communities, and they identified both community needs and barriers and facilitating factors to recruitment and retention of study participants. They also reviewed research protocols and monitored participants’ satisfaction. Experts and consultants from the Black and Hispanic communities assisted the staff and the community advisory board at each site with identifying and describing the significance of particular barriers within each city.
The barriers can be organized into community, group, and individual levels. The community-level barriers included limited interest in HIV among local minority communities, concerns about diverting limited resources from existing programs, and strong social controls and norms that discouraged interest in gay or HIV issues. These barriers made it necessary to generate publicity at the community level about the impact of HIV within the Black and the Hispanic communities and about increasing trust in local HIV research programs.
The phrase Black and Hispanic communities does not adequately describe the diversity of the people and the subgroups within the communities. Minority communities are as diverse as the majority population in terms of values, class, age, race/ethnicity, education, and sexual orientation. To successfully target local informants from within these populations, we used focus groups and other sources.
At the group level, Black and the Hispanic MSM communities were diverse and included men of different socioeconomic classes, religions, neighborhoods, primary self-identification (e.g., gay, bisexual, or transgender), and age. Recognition of this diversity led site organizers to contract with consultants who had ties to particular formal and informally organized subgroups. These consultants helped mold policies and initiatives to both facilitate effective communication and increase trust. Individual-level barriers were identified at each site with focus groups, interviews, and key informants. Perceived barriers, factors that would facilitate participation, perceptions about site location, and incentives were identified, and trust was established.
Careful monitoring and exchanges of information among the sites allowed for changes in recruitment tactics and efforts: consultants shifted their focus, activities that did not work well were dropped, and successful activities were increased. The MACS site in Pittsburgh used a social marketing model, and all of the sites used place, price (costs and benefits), product (reward), and promotion as components.55–57
Personnel
One person at each site was responsible for executing the recruitment plan, and staff, consultants from minority communities, and community advisory board members were responsible for various activities at each site. The staff were not formally trained in marketing or volunteer recruitment. The recruitment staff included nurses, social workers, psychologists, public health professionals, physician assistants, and physicians, all of whom were knowledgeable about the minority communities and had direct experience working with these communities. All hired staff were required to be culturally competent and able to effectively work with MSM, active drug users, and HIV-infected persons. Some of the staff at each site were members of the same communities that were being targeted and had already established community networks. Consultants and staff who worked in the field were generally known by community members and, in some cases, were referred to the project by board members and other community leaders.
The staff were highly motivated to support the program. They believed that the men who participated in the study received valuable tests and information and that the targeted communities would benefit by their participation. Encouragement from study investigators, high morale, and internalized expectations enabled staff to remain focused and energized.
Place
The location and hours of a research clinic influence recruitment; therefore, each site located its clinics in areas that were perceived by study participants to be accessible, convenient, safe, and private. The Los Angeles site located 1 clinic in a LGBT community center and the other in a clinic frequented by Hispanic persons. To increase participation among Black men in Pittsburgh, the staff set up a mobile clinic in a nearby town and a small city. The primary Pittsburgh study clinic was located outside the University of Pittsburgh Medical Center Complex, because a number of Black study participants expressed discomfort with the possibility of being seen by Black hospital personnel who might know them. Chicago expanded recruitment in a LGBT health clinic and a HIV clinic. Baltimore established a satellite clinic in collaboration with an existing Washington, DC, LGBT health clinic that already had extensive outreach to the minority communities. All of the sites found that clinic locations profoundly influenced the type of men who were recruited. Furthermore, because lack of time was a major barrier for study participants, convenient weekend and evening hours were necessary. The Baltimore site found that allowing people to walk in without an appointment was useful.
Product
Research studies produce products (rewards) for those who conduct them, including new knowledge, publications, pay raises, and prestige. Products that benefit study participants are not as apparent; therefore, our recruitment effort identified products that study participants both wanted and could potentially receive from the study.
The 2 products repeatedly cited by study participants in Pittsburgh during the 1980s were protecting individual health and a sense of altruism. 57 Men who did not have medical insurance were immediately interested in the study because of the free testing that could benefit them. These men received free tests every 6 months that were worth approximately $2500. Men who did have health insurance also were attracted to the study, because they could obtain tests they were reluctant to get from their personal physicians, who were not aware of their sexual orientation. The sense of altruism came from the men’s strong belief that participating in the research would protect both their friends’ and the community’s health.
In addition to protecting individual health and altruism, community advisory boards and community informants identified 3 new products for the 2000 recruitment drive.
- Aging and HIV data. The 1984 cohort had aged, and some of the new cohort were middle-aged men. They were aware of the health changes associated with aging and the need to identify the impact of HIV on aging.
- Information about the long-term effects of highly active retroviral therapy. Changes in drug regimens are common, and knowledge about the long-term effects of these drugs is needed.
- Effects of race/ethnicity. The rates of many diseases are associated with race/ethnicity. Therefore, research about the associations between race/ethnicity and HIV rates and race/ethnicity and the effectiveness of drugs used to combat HIV is needed.
Price
Understanding the "price" (costs) men had to pay to be in the study and the benefits that they received was necessary so that benefits could be highlighted and costs could be reduced. We used formative data to identify potential study participants’ perceptions of costs and benefits.
Facilitating Factors (Benefits)
Community advisory boards and clinic staff generated a list of reasons cited by study participants: free medical testing and results, altruism, financial incentive ($25), no invasive procedures, no drug treatment (access to drug trials was important), familiarity with the particular recruiting site, commitment to the local MACS, racially and ethnically diverse staff, walk-in appointments (in Baltimore), pleasant environment and staff interaction, and free/low-cost parking or convenient bus lines.
Barriers (Costs)
Distrust of research and researchers had to be dealt with directly and was accomplished in 2 ways. First, many potential study participants were reminded about the study’s positive reputation and community advisory board’s support. Second, staff enlisted minority Black and Hispanic supporters to recruit new study participants. Clinicians, health care providers, community leaders, and research staff were asked to recruit via networking. One supporter, who was motivated by his belief in the importance of the study, recruited 15 men. In exchange for his support, we bought advertising in his entertainment programs and gave him $10 for each man he recruited.
Distrust, however, ran deep. To the surprise of many recruiters, study participants needed repeated assurance that they would be informed about any real or potential medical problems that we found. The distrust was so clear that early in the campaign, trust-enhancing messages were incorporated into all communications. The following are other barriers that were identified by study participants: fear of loss of confidentiality, including being reported to the government, entering a gay or HIV clinic, and receiving mail or calls from study personnel at home; travel time; participation time; fear of needles; and racism and homophobia.
Significant differences in the power of individual facilitating factors and barriers were associated with socioeconomic status and acculturation into the larger LGBT community. Working-class and poor MSM were less likely to self-identify as gay or bisexual. Hispanic working-class MSM and poor recent-migrant MSM were more likely to be concerned about confidentiality. Middle-class MSM were more likely to understand the importance of research and its potential benefits for at-risk communities.
Promotion
The promotional campaign was developed at the community, group, and individual levels to target distrust issues and to publicize how costs were being reduced and benefits were being increased. Formative data about the products, costs, and benefits were used to design promotional materials. The sites phased in their promotional campaign by beginning with community-level activities, such as press releases, and following up with mailings to groups and meetings with group leaders. Individual-level activities were then introduced.
Community-Level Promotion
The campaign used city and minority media, particularly newspapers, to publicize the research and to increase favorable community attitudes. News releases about the study, health-related stories about HIV, human-interest stories, and ads were placed in local newspapers and magazines. The sites used similar media, although the messages varied in accordance with the sites’ needs.
The Los Angeles and Chicago sites also staffed chat rooms frequented by gay men. Staff simply mentioned in their chat room profiles that they were involved with HIV research and then responded to persons who were interested. The minority communities’ interest in HIV varied at each site. Interest was high in Los Angeles, Chicago, and Baltimore; however, even in those cities, segments of the minority community were less aware of HIV. In Los Angeles, interest in HIV was lower among lower-income Hispanics than among other groups. In Pittsburgh—the smallest city in the MACS—the minority communities had the least awareness and interest in HIV, possibly because the epidemic in that city is predominant among MSM and is only slowly being embraced by minority communities. Another difference associated with city size was the ability to get media attention for a particular study. In Baltimore and Pittsburgh, where there are fewer academic research centers, the sites had little trouble getting minority media coverage compared with the more competitive Los Angeles and Chicago media markets.
Each university has a historic relationship with the minority community. The University of Pittsburgh was perceived in a favorable light because of its perceived positive impact on the community; Johns Hopkins University in Baltimore was seen in a lesser light because of a long-standing rocky relationship with a nearby minority neighborhood. These site-specific reactions had to be considered when promotional activities were developed.
Group-Level Promotion
The second level of promotional activity was at the group level, where minority and LGBT clinics, organizations, and agencies were targeted. Recruitment staff met with group personnel and sometimes brought donuts, sandwiches, and incentives (pens and coffee mugs). Whenever possible, staff included someone who had a previous and successful relationship with the group. The meetings focused on the importance of the research to the community, the benefits available to study participants, and the efforts made by research staff to decrease barriers (e.g., travel costs and time). Recruitment from clinics and practices was most successful when there was a formal preexisting working relationship with the researchers and when study staff could identify and meet with eligible recruits.
Agencies that served men who were not covered by health insurance were most eager to recruit their clients so that their clients could benefit from free health screening and education. In Pittsburgh, these agencies often facilitated their clients’ participation by reminding them about, and driving them to, their appointments. Minority organizations were more likely to participate in recruitment if their leaders were included from the very beginning. There was considerable resistance and some refusals to cooperate if leaders felt they had been excluded from the planning phase. They believed that any missteps by researchers would jeopardize their own credibility and would cause harm to their members. Leaders who did commit were asked to allow recruitment staff to speak at their events and distribute incentives (pens, coffee mugs, condom holders, and candy) and recruitment information. Often, the group leader would publicly endorse the project.
Black and Hispanic MSM who participated in primarily White LGBT organizations and clubs were recruited through these venues. Recruitment staff set up tables and delivered presentations; the organizations and clubs were asked to distribute information via their newsletters and mailings. However, many minority MSM do not frequent gay-identified venues.50,51 Although these men remain practically invisible to the larger community, they do find sexual partners, which means they can be reached through the same networks that they use for finding partners. For many decades, LGBT persons have developed ways to identify each other, including wearing certain items of dress (e.g., men wore red ties during the early 1900s), inhabiting certain neighborhoods, walking in particular parks, advertising for same-sex roommates, and frequenting certain organizations and meeting places. To lessen detection by law enforcement officials or non-LGBT persons, these networking techniques have remained underground and are not widely known. However, these networks can be accessed. This reinforces the need to involve experienced and knowledgeable community members in campaigns that seek to recruit marginalized people. In larger cities, minority MSM clubs and organizations were successful venues for accessing these men. In smaller cities, informal groups, such as friendship groups and networks, were used. These networks included large e-mail lists that were amassed by minority LGBT opinion leaders.
Individual-Level Promotion
Community-level and group-level approaches are effective for conveying information, building trust, and changing attitudes. However, information is often not enough to generate motivation.42 All of the sites secured recruiters to motivate the targeted men. Recruiters for individual-level efforts included study staff, community advisory board members, consultants, study participants, health care providers, friends, partners, and community leaders.
Methods for contacting and recruiting men included one-on-one recruitment during community events, solicitation by health care and social service providers, and individual approaches through social networks. Men already in the study at all of the sites were asked to invite their friends to join the study and to accompany them to their visits. In Pittsburgh, friends were paid $10 for every friend who joined the study.
The staff in Pittsburgh and Baltimore organized house parties to recruit study participants: supporters of the study were invited to host a party for eligible men, and the host was given a financial incentive (on the basis of number of people who attended) and was reimbursed for refreshments. Staff spoke at the parties and distributed brochures and incentives (pens, T-shirts, and coffee mugs). Staff reported that many men said their friends had attended parties and urged them to attend, which created a great deal of publicity among minority MSM. Whereas recruiters may have difficulty finding nongay MSM, who are often described as men on the "down low," these men and men who are gay find each other with relative ease. The Pittsburgh site reported that house parties accounted for the largest number of minority recruits.
All sites used flyers and brochures to recruit men, and those that were designed by minority designers were most successful. Materials were developed for men who had low literacy levels and were translated into Spanish. Flyers in clinic restrooms proved successful in Los Angeles; in Pittsburgh, the most-mentioned material was a 1-panel brochure that showed minority men discussing the importance of HIV research on one side and listed the benefits of participating in the study on the other.
The Los Angeles and Baltimore sites used an innovative e-mail solicitation. Recruiters visited gay chat rooms and simply described themselves as recruiters for an HIV study, and potential study participants who were interested e-mailed the recruiters to discuss their participation. Of the 374 e-mails received by a recruiter in Los Angeles, 23 resulted in successful enrollments.
Analyses of the successful recruiters at each site showed that being well informed about study goals and protocols, being strongly motivated to support the study, and being viewed as trustworthy by the recruits were most important. Each site spent approximately 18 months on the campaign—from planning to closing recruitment.
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RESULTS |
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TOPABSTRACTINTRODUCTIONDISTRUST AS A BARRIER...BACKGROUNDRESULTSCONCLUSIONSReferences |
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Although MACS researchers expected to recruit 667 Black and Hispanic men into the study, they actually recruited 943. Table 1
shows that the proportion of Hispanic study participants doubled compared with the 1987 campaign, and the proportion of White study participants decreased by 20%. These changes were even more significant when compared with the original campaign in 1984. The number of Black recruits increased by 56%; however, the proportion of Black men decreased because of the large increase in the number of Hispanic recruits. All of the sites reported that they had adjusted their tactics on the basis of success or lack of success. In some cases, sites ran into unexpected difficulties. Los Angeles staff reported that they had more difficulty recruiting HIV-negative men because of the competing demands from other studies and projects. Both Chicago and Los Angeles staff reported difficulty in getting local gay media coverage of their studies, probably because of the size of their communities and the demands for media coverage. All of the sites reported minor problems with men who tried to enroll at various clinics at each site or who misrepresented themselves in order to qualify for the study. Staff assumed that these men were motivated by the financial incentives.
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Self-Reports on Learning About the Study
During screening, men were asked how they found out about the study: (1) someone told them (if yes, was it a MACS participant?); (2) newspaper, posting, or flyer; (3) contact from the study site; (4) health care provider; (5) contact from non-MACS service; (6) did not know; and (7) other. Most men said someone told them, usually a MACS participant. The second most common source was health care providers, which was followed by contact from the study site; newspaper, posting, or flyer; and contact from non-MACS service. This was expected, because experience showed that among MSM, word of mouth would be the most important promotion for our effort. Although flyers and ads provide information, they do not necessarily provide motivation, particularly among marginalized populations.
When responses were reviewed by site, there were some interesting differences. Los Angeles and Chicago staff were most successful when study participants contacted friends and other potential recruits and when there was direct contact from the study site. Baltimore staff were most successful when they used ads, media outreach, and flyers, and Pittsburgh staff were most successful when they used contacts who were not affiliated with the study. The data supported the conclusion that in Los Angeles and Chicago, media coverage was largely unsuccessful because of the competition from the many other research, health, and community groups. In Pittsburgh, where support networks could more easily be created and maintained compared with larger cities, a Reach One, Teach One campaign was feasible and successful. Baltimore has a smaller media market compared with Los Angeles or Chicago, and that site was able to generate more media attention and could afford extensive advertising.
Demographic data suggested that there was no association between age and how men learned about the study. The more educated the men, the more likely that they learned about the study via media and flyers. They also were slightly less likely to be referred by a health care provider. There was an association between race/ethnicity and how men learned about the study. Hispanic men were significantly less likely to identify media or flyers as sources of information. They were more likely to have learned about the study through contact with staff, perhaps because the Chicago and Los Angeles sites mounted strong recruitment drives at clinics that served Hispanic persons. HIV-positive men were twice as likely as HIV-negative men to have learned about the study through health care providers and direct contact from the site. HIV-negative men most often learned about the study through personal contacts.
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CONCLUSIONS |
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Our data show that there is a complex interaction between recruitment strategies, size of cities, demographic factors, and communication networks among the targeted groups. A major difference between the recruitment efforts at all sites during the 1980s and the most recent effort was the dramatic change in NIH policy that was announced in 1994,58 which allowed the investigators to allocate funds for recruiting minority men.
Recruiting minority men into HIV studies requires careful planning by members of the targeted community and professionals who are knowledgeable, experienced, and competent in minority issues, community organization, and social marketing. It became evident during our effort that although these individuals may not have had formal training in recruitment, they all understood the importance of effective communication, respect for the targeted community, and the principal investigator’s support. This support was available not only because of the investigators’ personal commitment to improving the health of minorities but also because of recent attention to the importance of recruiting minorities into research. Research universities need to establish formal training programs for those who recruit diverse populations into research.
Including knowledgeable minority members during the earliest stages of planning was the most important factor in our successful recruitment of men. Being a member of a racial/ethnic group is not a guarantee that the person is well respected within the community or is particularly skilled at working with minority community members. Our campaign invited minority participation in different ways: some sites used community consultants, and others used staff who were well integrated into the community. In all cases, the participation and input from "insiders" was essential.
Researchers often begin planning recruitment campaigns by focusing on promotional activities; however, these are the last activities that need to be planned. Data from focus groups, interviews, and simple conversations with study participants and members of the community advisory boards were indispensable, because they identified the perceived costs and benefits to potential study participants. Once these costs and benefits were fully understood, staff were then able to design the products most sought by the participants.
The research site’s location and hours were important, and information about study participants’ preferences should be gathered through formative research. The building and neighborhood must be perceived as safe and easily accessible. Free or reimbursed nearby parking, access to major highways, and having to ride only 1 bus all increased participants’ willingness to participate in the study.
Existing minority LGBT agencies were invaluable sources of study participants, and they provided credibility to the recruitment effort. Few referrals came from clinics that were not formally affiliated with the study. No matter how willing staff from nonaffiliated clinics were, they did not recruit to any significant degree at any site. In one city, staff at a nonaffiliated clinic were told by the health department director that they were not allowed to refer study participants (no reason was provided). Recruitment from clinics was most successful when study staff also were staff at the clinics or were stationed there as part of the study. When study staff were able to review patient files at clinics and then speak with the patients, they were able to successfully recruit large numbers of men.
The preparation of promotional materials depended on the quality of data gathered during the formative research, particularly data on products and the costs and benefits associated with participating in the study. Promotional materials that highlight issues perceived to be important by targeted community members will obviously be more persuasive than materials that address issues perceived to be significant by the investigators.
Because each site had already established ties with the community, the 2002–2003 campaign took less time and required fewer funds than might be needed for studies with no preexisting community ties. This suggests that research centers could benefit from establishing long-term mechanisms for recruiting minority persons into research. This pool of potential subjects could be carefully nurtured to reduce problems that a single researcher may cause by unskillful interaction with minority communities. Finally, future research should examine the impact of (1) previous history between research universities and their communities, (2) informal minority networks and community advisory boards, (3) establishing trust, (4) cultural issues, (5) city size, (6) travel issues, (7) access to clinical populations, and (8) recruitment methods.
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Acknowledgments |
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Financial support was received from the EXPORT Health Project at the Center for Minority Health, University of Pittsburgh, Pa (grant 5-P60-MD-000-207-4).
The Multicenter AIDS Cohort Study (http://www.statepi.jhsph.edu/macs/macs.html) includes the following. Baltimore, Md—The Johns Hopkins University Bloomberg School of Public Health: Joseph B. Margolick (principal investigator), Haroutune Armenian, Barbara Crain, Adrian Dobs, Homayoon Farzadegan, Nancy Kass, Shenghan Lai, Justin McArthur, and Steffanie Strathdee. Chicago, Ill—Howard Brown Health Center, The Feinberg School of Medicine, Northwestern University, and Cook County Bureau of Health Services: John P. Phair (principal investigator), Joan S. Chmiel (co-principal investigator), Sheila Badri, Bruce Cohen, Craig Conover, Maurice O’Gorman, David Ostrow, Frank Pallela, Daina Variakojis, and Steven M. Wolinsky. Los Angeles, Calif—University of California, UCLA Schools of Public Health and Medicine: Roger Detels and Beth Jamieson (principal investigators), Barbara R. Visscher (co-principal investigator), Anthony Butch, John Fahey, Otoniel Martínez-Maza, Eric N. Miller, John Oishi, Paul Satz, Elyse Singer, Harry Vinters, Otto Yang, and Stephen Young. Pittsburgh, Pa—University of Pittsburgh, Graduate School of Public Health: Charles R. Rinaldo (principal unvestigator), Lawrence Kingsley (co-principal investigator), James T. Becker, Phalguni Gupta, John Mellors, Sharon Riddler, and Anthony Silvestre. Data Coordinating Center—The Johns Hopkins University Bloomberg School of Public Health: Lisa P. Jacobson (principal investigator), Alvaro Muñoz (co-principal investigator), Haitao Chu, Stephen R. Cole, Stephen Gange, Janet Schollenberger, Eric Seaberg, Michael Silverberg, and Sol Su. NIH—National Institute of Allergy and Infectious Diseases: Robin E. Huebner. National Cancer Institute—Jodi Black.
Human Participant Protection
Institutional review boards at each of the participating universities reviewed and approved all study and recruitment protocols and materials.
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Peer Reviewed
Contributors
A.J. Silvestre originated the study, conducted interviews, analyzed the data, and led the writing. J. B. Hylton, L. M. Johnson, C. Houston, M. Witt, and L. Jacobson helped originate the study, develop questions, provide data, and assist with analysis, and they reviewed drafts of the article. L. Jacobson also provided statistical support and analyses. D. Ostrow consulted with the authors throughout the study design, analysis, and writing processes and edited the article.
Accepted for publication November 17, 2005.
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TOPABSTRACTINTRODUCTIONDISTRUST AS A BARRIER...BACKGROUNDRESULTSCONCLUSIONSReferences |
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