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Bridging the Divide: HIV Prevention Research and Black Men Who Have Sex With Men Michele Peake Andrasik, PhD, Christian Chandler, MPH, Borris Powell, BA, Damon Humes, MHS, Steven Wakefield, BS, Katharine Kripke, PhD, and Daniel Eckstein, MA

Black men who have sex with men (MSM) represent 1 in 500 US citizens and 9% of all MSM in the United States,1 yet they accounted for 38% of new HIV infections among MSM and 70% of new HIV infections among Black males in 2010.2 Nationally, MSM represent about 4% of the male population, yet they account for 52% of all people living with HIV.3 HIV prevalence among Black MSM is roughly double the prevalence among White MSM.2 The impact of HIV on the Black MSM community has dramatically increased over time. From 2006 to 2009 the annual number of new HIV infections among MSM rose by 20% and new infections among young MSM (aged 13 to 29 years) during this same period increased dramatically (48%).4 For Black MSM the HIV disease burden is experienced throughout the lifetime. Among young men (aged 13--24 years), Black MSM are 14 times more likely to test HIV-positive than are White MSM.5 As a result, many Black MSM are infected with HIV as they enter adulthood. Like other racial and ethnic groups, Black MSM are more likely to date other Black MSM.6,7 This practice, known as assortative mixing, combined with higher HIV prevalence within Black MSM communities, may contribute to the dramatic increase in the odds of becoming infected for Black MSM as they age. By the time Black MSM reach age 25 years, 1 in 4 are already infected with HIV and by age 40, 60% are living with HIV.8 Published data regarding HIV trial participation has focused on the larger Black community and has shown that overall US Blacks take part in HIV vaccine trials at the same rate as Whites.9,10 From 1988 to 2002, Black individuals represented 10% of the volunteers enrolled in US preventive HIV vaccine trials.11 Unpublished data through March 2013 indicate that 22% of all HIV vaccine trial participants identified as Black or African American and, of these participants, 8% identified as

Objectives. We obtained contextual information regarding documented barriers to HIV clinical trial participation among Black men who have sex with men (MSM), and explored current preventive HIV clinical trial attitudes, beliefs, and perceptions among Black MSM leaders in the United States. Methods. We conducted 2 focus groups with Black MSM leaders attending an annual African American MSM Leadership Conference on HIV/AIDS. Focus group questions explored biomedical research perceptions and attitudes, barriers to participation in biomedical prevention research, and steps that need to be taken to address these barriers. A feedback and member checking (participants presented with final themes to provide feedback and guidance) session was also held at the 2012 conference. Results. Three distinct themes emerged regarding Black MSM engagement and participation in HIV vaccine research: (1) community-based organizations as true partners, (2) investment in the Black gay community, and (3) true efforts to inform and educate the community. Conclusions. A key focus for improving efforts to engage the Black MSM community in preventive HIV clinical trials is building and maintaining equitable and reciprocal partnerships among research institutions, Black-led AIDS service organizations and community-based organizations, and community members. (Am J Public Health. 2014;104:708–714. doi:10.2105/AJPH.2013.301653)

Black MSM (e-mail communication from Alicia Sato, Statistical Center for HIV/AIDS Research and Prevention, March 27, 2013). Although there has been a marked increase in the proportion of racial/ethnic minority participants in the United States in phase I and phase II preventive HIV vaccine trials across National Institute of Allergy and Infectious Diseases (NIAID)-funded networks, these numbers do not reflect the HIV epidemic’s impact on Black MSM in the United States. The inclusion of Black MSM in HIV vaccine research is necessary for 2 main reasons. First, it is plausible that a vaccine may have variable efficacy in different racial/ethnic groups12,13 and underrepresentation may have implications for generalizability of clinical trials results in these populations. Insufficient numbers of participants of color in the first HIV vaccine efficacy trial14 made it difficult to interpret subgroup analyses of minority populations. This is of particular interest because there were fewer infections among Black and Asian

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vaccinees compared with Black and Asian placebo recipients in that trial, but the numbers of Black and Asian participants were so small that it was impossible to know whether this was an actual sign of vaccine efficacy or a result of random chance. Second, participation in HIV vaccine clinical trials may help ensure increased acceptability when a licensed vaccine becomes available. In general, major medical, clinical, and behavioral research studies have limited numbers of Black individuals involved as research participants. Much of the literature on the relative absence of Blacks in research points to the mistrust of researchers for many reasons including historical and current racial discriminatory practices directed at African Americans.15---17 Several studies have explored barriers to participation specific to HIV vaccine trials experienced by the larger African American community. The most commonly cited causes of poor participation by Blacks in HIV vaccine trials are mistrust or fear, stigma, and

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misinformation.18,19 Survey data have found that many Black individuals believe that a cure for AIDS exists and is being withheld from the poor20 or kept a secret.21 For many Black people, the term “medical research” is associated with being lied to, used, and treated like guinea pigs.22 Additional barriers to participation include lack of information and understanding as well as limited knowledge of the nature of research.22---25 Few studies have explored the barriers to HIV vaccine research participation faced by Black MSM. Social stigmatization of HIV and AIDS is a persistent concern for Black individuals in the United States.26 Black MSM often experience being labeled as “high risk” in the larger gay community and the fear of strengthening this stereotype may prevent participation in an HIV vaccine trial. In one study of MSM, participants identified the stigma of trial enrollment and the fear of being viewed by intimate partners as high risk or promiscuous as a significant barrier to enrollment.27 Recent efforts by the HIV Vaccine Trials Network (HVTN) and other NIAID-funded networks to improve preventive HIV clinical trial participation among Black, Latino(a), and MSM communities have focused on partnering with community and faith-based organizations to increase awareness of the need for an HIV vaccine, and to improve public knowledge and attitudes about HIV vaccine research. These efforts have included developing research-based HIV vaccine---related messages; identifying, establishing, and sustaining partnerships with organizations and key opinion leaders who are part of the priority audiences and who would disseminate the key messages; and identifying other effective communication channels and strategies for stakeholder engagement and dissemination of HIV vaccine research---related information. We report the findings of a focus group study of Black MSM key opinion leaders examining attitudes and perceptions of HIV prevention research and the NIAID HIV Vaccine Research Education Initiative (NHVREI) in the Black MSM community. The objectives were to (1) obtain important contextual information regarding documented barriers to HIV clinical trial participation among Black MSM, and (2) explore current HIV vaccine clinical trial attitudes, beliefs, and perceptions among Black

MSM in the United States who had been involved in NHVREI to ascertain if exposure to NHVREI made a difference in the way Black MSM key opinion leaders viewed biomedical interventions. NHVREI’s logic model focused on including community leaders to reach key populations. As such, the researchers hypothesized that those MSM leaders with a history of involvement with NHVREI activities would indicate more support for MSM participation in preventive HIV vaccine trials specifically and biomedical research generally.

METHODS The HVTN Legacy Project held a total of 2 focus groups and 1 feedback and member checking session. Two focus groups were held at the 2011 National African American MSM (NAESM) Leadership Conference on HIV/AIDS. A focus group moderator’s guide was developed that used open-ended questions and probes (see the box on page e3). The guide was informed by the NHVREI Key Influencer Survey (e-mail communication with Dan Eckstein, NOVA Research Company, November 19, 2010) developed for NHVREI partners to explore whether interaction with NHVREI activities led to attitudes and activities supportive of HIV prevention research among key influencers of highly HIV-affected communities in the United States.28 NHVREI activities focused on increasing biomedical research participation among racial and ethnic minority populations. Focus group questions explored biomedical research perceptions and attitudes, barriers to participation in biomedical prevention research, and steps that need to be taken to address these barriers. Two of the authors (MA and BP) distributed screening surveys to NAESM participants as they entered the Black Caucus and the Science Generation meeting—2 biomedical HIV prevention---specific meetings at the 2011 conference. Potential focus group participants were provided a screening tool that assessed length of time in the HIV/AIDS field, history of involvement with NIAID-funded network activities, gender identity, age, and sexual orientation. Participants who met eligibility criteria (male gender, gay or bisexual, and more than 5 years working in HIV/AIDS) were invited to participate in focus group 1 (n = 8) if they indicated a

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history of involvement with NIAID-funded network activities or focus group 2 (n = 8) if they indicated no history of involvement. Groups were held in private rooms during the conference with a total duration of 1.5 to 2 hours. Researchers held a subsequent feedback and member checking session (n = 8) during the 2012 NAESM conference. Members from the initial focus groups were invited to attend. During this session, researchers presented the themes from the data collected during the 2011 focus groups and solicited feedback and discussion of the identified themes. The feedback and member checking session was held for 2 reasons: (1) in the initial focus groups, participants expressed frustration with researchers collecting data and not obtaining participant input before dissemination; as such, we focused on ensuring that all participants were able to provide input; and (2) we wanted to ensure that the themes we identified resonated with the participants and that we captured the data correctly. Focus groups were digitally recorded, transcribed verbatim, and uploaded into Atlas.ti6 software (Atlas.ti Scientific Software Development GmbH, Berlin, Germany). We utilized thematic analysis (seeking phrases or sentences describing a pattern, trend, concept, or process) to review and code transcripts employing a constant comparative method.29 We specified no codes, categories, or themes a priori. A team of 3 researchers (1 Black woman and 2 Black MSM) analyzed the data thematically to yield distinct categories and codes.30 Initially, each researcher independently analyzed the focus groups by reading the transcripts and coding the data into categories that “summarize and systemize the content in the data” (e.g., perceptions of research, mistrust, awareness of biomedical research).31 Then the research team met to develop clusters of meaning by removing overlapping repetitive statements and organizing statements into meaning units (e.g., barriers to participation, structural factors)32 and developed a thematic framework.33 These steps were completed a second time with the subsequent focus groups. We resolved instances of disagreement on thematic codes by discussion. Throughout the analytic process we identified new themes and expanded existing themes. To enhance the validity of the findings, the research team utilized member checking (1 session at the 2012 NAESM conference

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Sample Focus Group Guide Questions 1. When you talk about biomedical prevention research with other Black MSM, what forms do you talk about? 2. What are the general attitudes/perceptions of biomedical HIV prevention research in the Black MSM community? a. What level of support exists for biomedical prevention research? b. What are some of the good or positive things you have heard about biomedical HIV prevention research? c. What are some of the bad or negative things you have heard about biomedical HIV prevention research? d. What have you heard from Black MSM about their participation in biomedical HIV prevention research? 3. How do you think we could inform Black MSM about biomedical HIV prevention research trials? 4. When you think about the task of spreading the word about the importance of HIV biomedical prevention strategies and research, what are the things that might hold a person back? 5. What resources do you need to help overcome the negative things you have heard about biomedical HIV prevention research? 6. Many individuals mention safety as a concern in biomedical HIV prevention research. What are some ways to effectively address safety concerns among Black MSM? 7. So let’s review the concerns about biomedical prevention research that were expressed in the group today. a. How strong are the concerns that were raised? b. What attempts need to be made to allay these concerns? Note. MSM = men who have sex with men.

where participants were presented with final themes and provided feedback and guidance), investigator triangulation (independent coding by 3 investigators), and peer debriefing (discussed emerging themes and interpretations with other researchers).34

RESULTS Twenty-two participants were screened with 7 declining participation because of conference conflicts (i.e., presentation or attendance at a concurrent session). Participants were 15 exclusively gay men and 1 queer-identified man (n = 16) with a mean age of 38.25 (SD = 9.71) years. All men self-identified as gate keepers and key opinion leaders in the MSM community and endorsed working in the HIV/AIDS field for more than 5 years. Fourteen men identified as Black, 1 as Afro-Latino, and 1 as mixed race. The majority held college degrees, graduate degrees, or both (n = 12); had been in the HIV/AIDS field for more than 10 years (n = 10); worked for an AIDS service organization or community-based organization (CBO; n = 11); and had attended 5 or more NAESM conferences (n = 11). Although men in focus group 2 identified a specific NIAID-funded network partnership, analysis of the coded data revealed no demographic differences between the 2 groups and identical themes emerged in both. Focus group participants identified many of the

barriers presented in the literature. They discussed issues related to acceptability,35 compensation,36,37 lack of science literacy,22---25 mistrust of research organizations,18---20 structural issues (e.g., poverty, lack of resources), and competing needs.24,38 Although participants noted that these barriers were important, they felt that the most formidable barrier across all biomedical preventive HIV research is the absence of existing relationships between research organizations and the Black MSM community and its leadership. Three distinct themes emerged regarding Black MSM engagement and participation in preventive HIV research: (1) CBOs as true partners, (2) investment in the Black community, and (3) true efforts to inform and educate the Black community. The focus group discussions were centered on experiences with biomedical research with a focus on HIV vaccine research. Except where noted, responses were referring to HIV vaccine research and were essentially unanimous concerning data themes outlined in the next paragraphs.

to collect and manage the data. Many of the men worried that the current funding environment where few funding opportunities exist for CBOs may “force” CBOs to enter into partnerships with research agencies as a means to sustain the organization and overshadow the goal of making progress in the development of an HIV vaccine: They [research institutions] are only giving these CBOs a very small, small amount of dollars to do what they are requesting. However, if you want them to do this work, then you have to treat them as part of the research and understand that if this is a 3-year project, that we’re going to give you a 3-year grant to partner with us to do that. Once again, you say it’s important, but you pay us like it’s not.

Community-Based Organizations as True Partners

Participants described a hierarchy among researchers and the larger community wherein the researchers were presumed to be at the top. Although the 2 work together and are committed to HIV prevention, there is no space provided for true dialogue. Efforts to bring community and researchers together were viewed as “window dressing” because of the lack of identified space and time to work together, learn from each other, and share ideas:

Developing and maintaining equitable and reciprocal relationships between CBOs and research institutions was the focus of much of the conversation in both groups. Participants believed that CBOs are often asked to provide data without being offered adequate resources

When we [the community] come together with the researchers it’s still a “them and us” and it’s very much a disconnect—it’s “OK; yeah, we need you.” OK, you all go into your little session and we go into our session but we never come together, and it’s this rigidness that exists. You know, “I don’t really want to talk to you, but I

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need you to go and get your people into the project,” and it’s really unnerving.

Finally, the majority of participants indicated that Black MSM leaders working in CBOs often assist research institutions with data collection and, in some cases, collect all project data, yet are most often not included in manuscript writing or offered authorship on resulting publications. As one participant noted, To show true partnership you don’t want to be given a product at the end, after you have collected all the data and you have no involvement and no input and then you see this report and then you go “oh, wow, I didn’t know this is what you were going to write.” So I think authorship on some of the publications . . . because I collected the data and ethically, as a researcher, you should give me authorship. Don’t discount the work that I have done.

These factors led some participants to view larger research institutions with little access to the community as “pimping out” small CBOs for their intellectual property. Most existing relationships were viewed as ones wherein all of the power and decision-making is placed in the hands of the research institution and CBOs are largely “exploited” for their connections and access to the target population: I think researchers and people from large institutions who have the ability to write grants or get research dollars have figured out that small CBOs will participate if they get some type of funding. So, many CBOs have been pimped by the larger institutions or academic institutions, meaning, if you get a $5M grant from your research institution, you can give me $25,000 to do this work. You have no access to the population; I do.

This lack of true partnership and funding equity was often viewed as manifesting relationships that breed further mistrust of researchers by the Black MSM community: The question is, do these CBOs really believe in these sort of research initiatives themselves or does this become additional dollars just for sustainability? And so the question is, are we doing this out of a sustainability measure, or do we really believe, or are we still sort of holding on to some of the same issues around trust?

Lack of Investment in the Black Community Research institution and CBO partnerships were viewed as ideal vehicles to address absent resources and enhance existing services in the Black community. Many of these relationships, however, were viewed as falling far short of this

ideal and most included no provisions for capacity building, enhancing existing HIV prevention programs, and ensuring long-term sustainability for services in the community: You want my intellectual property and that of those that work in our institution and that institutional legacy and its connection to this community; however, you are going to be the benefactor at the end of the day and that doesn’t build capacity in any kind of way, or I don’t often see a sharing of that resource for that community that is giving you all that information.

Discussion centered on the ebb and flow of resources in Black communities, how HIV prevention and intervention resources are often directly tied to grant dollars, the lack of focus on building infrastructure and capacity in Black communities, and the perceived failure of many funding institutions to award grants to Black researchers working in the community. Participants supported the need to create an environment in HIV prevention research that supports prolonged and mutually beneficial partnerships with a focus on infrastructure and capacitybuilding initiatives that serve to strengthen communities most impacted by HIV and AIDS: Researchers aren’t necessarily invested in communities. The way that public health is funded, or health in general—especially biomedical research—is that you have to go and find a vulnerable population, like go and find somebody to pick off, and now I’ve got to use you to get my numbers, to get this up to do whatever we gotta do, and there’s no sustainability.

Participants also felt that much of the focus in HIV prevention is on subgroups within the Black community. To “truly engage the Black community” the focus must be building solidarity around HIV and AIDS for the entire community. All participants supported the notion that continued focus on MSM only or any other subgroup would prove unsuccessful in engaging the community in HIV prevention. The men highlighted the need for research to address some of the community-level stigma with regard to living with HIV and gay or bisexual identity. Participants agreed that this would help improve community solidarity while improving the community’s perceptions of HIV generally and HIV vaccine research more specifically. As one participant pointed out, “Whatever happens with biomedical research, it needs to build some kind of solidarity in the community.”

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True Efforts to Inform and Educate the Black Community Current community education efforts were viewed as sporadic and lacking comprehensive user-friendly information. Participants agreed that effective efforts to inform and educate the Black community and generate interest and positive discussion around HIV prevention research required continuity: The limited conversation that [Black MSM] do have [among peers] is very surface because when we [CBO] partner with someplace like one of those local universities doing vaccine-related stuff, they’ll come in and do this brief blurb. Sometimes it’s over the head of the participants; sometimes some folks get it; but then what happens is, again, it’s those one-shot hits that comes sporadically and it’s like it’s not a constant reinforcement around why would we be having a conversation.

Several men identified a lack of understanding with regard to what participants should expect once enrolled in a trial and were uncertain about how to discuss the history of HIV prevention research, knowledge gained from past trials, and information or knowledge expected to be gained from current trials. Furthermore, participants expressed concern about their ability to adequately explain concepts such as partial efficacy and the interface between different modes of prophylaxis: More information is needed about what the specific study is about, the history of past trials, what to expect, where they are looking for African American men; where are the opportunities for us to be part of the conversation? Where is the research going, after that, what other sort of components can I be involved in other than just going to the appointments?

This lack of information left many participants feeling uneasy about communicating the importance of research participation to their peers and community members. Several felt that they would be unable to champion clinical trial participation until they felt they had the “whole story”: It becomes very challenging to sell it and then, you know, I become very apprehensive. Do I hoodwink my community into believing this product when I am on the fence about it myself? And that makes it very challenging; I can’t get behind something where I don’t feel like I’m getting the complete whole story.

In the follow-up feedback and member checking session at the 2012 NAESM conference, participants suggested crafting guidelines for both CBOs and research institutions that

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provide instruction on establishing and maintaining equitable relationships of power, influence, and resources. Feedback during this session indicated that benchmarks of readiness and capacity, especially for CBOs, should be established to determine if partnerships are sustainable. The perception was that, for these guidelines to have an impact, their development must include representatives of funding institutions and ultimately be recommended by these institutions. These collaborations39 may allow for proactive activities to ensure the availability of resources to the community for the continuation of beneficial activities once the research has ended.

DISCUSSION Despite the research teams’ hypothesis that involvement in NIAID-funded network activities would result in thematic differences between the 2 groups, we observed no differences. The findings suggest the need for components that strengthen community and academic partnerships through the creation of equitable relationships. The absence of reciprocal and equitable relationships between Black MSM community leaders and researchers was identified as an important barrier in the effective engagement and recruitment of Black MSM into preventive HIV trials. The perceived lack of effort and interest in working to establish meaningful relationships between Black-led CBOs and research institutions resulted in mistrust of researchers and the larger research agenda. Although there was some mention of historical reasons for mistrust, current mistrust was perceived as largely stemming from more recent experiences with the research establishment. Participants described these more recent experiences as including 1. partnership goals and objectives largely driven by the needs of the research organization rather than shared equally among the research organization and community organizations, 2. insufficient compensation provided for work on research projects, 3. community representatives excluded from authorship on academic papers, 4. community representatives with limited or most often no input on study design and implementation, and

5. CBO role often limited to outreach and recruitment. The focus on relationships by participants in the focus group is not surprising as social psychologists have found that among African Americans positive interpersonal relationships are highly valued.40 Efforts to build relationships must take into account cultural differences (e.g., primary focus on relationships and community (African axiology) versus primary focus on objects, facts, and outcomes (European axiology) and accommodate the fact that individuals or groups holding divergent value systems and assumptions such as these may draw contrary inferences from the same set of experiential events.40 Participants also discussed a hierarchy wherein they perceived researchers as holding more power, privilege, and resources than the communities where the research often takes place and the CBOs facilitating the research. This is particularly important, as research institutions and organizations are dominated by White researchers. African Americans are underrepresented in science and engineering professions41 and for the minority of Black individuals engaged in research, obtaining funding may present a significant barrier. A recent report42 examining the relationships among race and National Institutes of Health (NIH) award probability showed that Black grant applicants are 10 percentage points less likely to be awarded NIH research funding compared with Whites. Focus group participants indicated that researchers are often viewed as taking intellectual property and resources (i.e., the time and effort of individuals) from the Black community without giving back. Participants identified sustained engagement (ongoing and consistent research presence in the Black community) as crucial, highlighting the fact that currently most efforts are specific to a trial, funding stream, or grant project. Furthermore, many participants who had experience partnering with research organizations indicated a lack of information to adequately discuss trial participation with their community members. This has often been cited as a barrier in the literature and is not unique to Black MSM leaders.18,37,43---45 It may be that to address historic inequities, researchers will need to involve community members and leaders as equal partners throughout all phases

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of the research process.46 This may be particularly important during research question generation and study design, where involvement may increase relevance to the community and participation. The establishment of true partnerships might also serve to improve cultural responsiveness and humility among researchers and scientific literacy (i.e., research design, methods, analysis) among community members. In addition, incorporating efforts to “give back” through building community capacity (e.g., equipment and supplies for clinics) and increase available resources (e.g., provision of training or salary support for CBO staff) should be included as aims and outcomes of research protocols. Historically, recruitment of minority populations has often involved labor-intensive relationship-building efforts.47 Intensive efforts to become more active in the Black MSM community have been well received by MSM leaders and extremely successful as evidenced by the Rochester HVTN Clinical Research Site efforts to engage the local house and ball community in Western New York.48,49 To demonstrate commitment to the Black community, researchers might also consider supporting local services,50 attending cultural or social functions, volunteering to assist community projects related to research, and setting aside time to interact periodically with communities to build trust and mutual respect.51 Funding institutions, agencies, and foundations might consider including requirements that seek to increase community capacity. These requirements might include 1. hiring and training community research assistants, 2. developing community dissemination plans in collaboration with community partners, 3. identification of community partners as coinvestigators and consultants, 4. generating a community involvement plan detailing the involvement of community members and leaders as equal partners throughout all phases of the research process, and 5. aims and objectives to increase capacity building for CBOs. Participants indicated that efforts need to be made to ensure that trials include more Black individuals in the research staff. Black individuals have been historically underrepresented in

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medical and mental health professions further perpetuating culturally embedded mistrust.52 Finally, focused and continuous community awareness and education efforts are needed for the entire Black community regardless of sexual orientation. Participants noted that continued focus on Black MSM in HIV prevention only serves to enforce existing stereotypes and ignores the fact that MSM are part of the larger Black community. Efforts might include weekly or monthly community educational forums that include time for questions and answers, participation in community events (e.g., Black gay pride, Juneteenth celebrations), and engaging Black trial participants as community educators to speak about their experience at community events or forums. Research staff might also consider making reprints of published articles on project treatments (i.e., pre-exposure prophylaxis, microbicides, vaccine products) available in easy-to-read summaries as well as other information that helps community members feel informed.24,38 In a true social action model of community participatory research,46 community members could be included on publications, improving the capacity of the community and better establishing interest of community members in the research enterprise.

may be themes that were not identified. However, the data presented here add to the limited information currently available regarding Black MSM participation in preventive HIV trials and may assist in hypothesis generation. Third, this study was conducted by the HVTN in an effort to understand, from the perspectives of Black MSM leaders, how to improve efforts to reach out to the Black MSM community to collaborate and promote research participation. Research that explores commitment by research organizations and funding bodies, perceived investigator responsibilities to communities involved in their research, and research involvement, investment, and support of Black communities is needed. Despite these limitations, to our knowledge, this is the first article to report data from the perspective of Black MSM leaders and the findings highlight important points that have not been explored in the literature. Black MSM leaders perceive the cause of poor participation by Black MSM in preventive HIV clinical trials as some combination of lack of equitable and reciprocal relationships between CBOs and research institutions, failure to invest in the Black MSM community, and lack of consistent and continuous efforts to inform and educate the larger Black community.

Limitations

Implications

There were several limitations to this study. First, the sample size was small and consisted of MSM key informants from a conference focused on Black MSM health disparities. As a result, the findings may not generalize to other Black MSM leaders, particularly those who might not attend the conference. In addition, participants were all high-school graduates or above, with the large majority completing college and almost all identified as exclusively gay; thus, the results may not generalize to individuals with lower formal education, with different socioeconomic status, or who identify as bisexual or do not identify as either gay or bisexual. Second, because the population of Black MSM leaders in the United States is extremely small and the NAESM conference offered an opportunity to recruit this very specific cohort, we were only able to conduct 2 focus groups. Although it is ideal from a data analytic standpoint to have more focus groups, it was not feasible. As a result, we may not have reached saturation53,54 in our data and, therefore, there

This investigation suggests several methods for improving efforts to engage the Black MSM community in preventive HIV clinical trials. A key area of focus is building and maintaining equitable and reciprocal partnerships among research institutions, Black-led AIDS service organizations and CBOs, and community members. Structural-level change and actions to address these findings are needed to ensure community involvement and subsequent participation in future preventive HIV clinical trials. By working toward a mutually beneficial and equitable relationship, community members can improve their research literacy, while researchers enhance their cultural awareness, responsiveness, and sensitivity to the community. Inclusion of and support for community leaders to share in the scientific writing process can improve their individual capacities, the capacity of their respective organizations, and that of the communities they influence, potentially increasing interest among Black leaders to pursue careers in HIV biomedical research.

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It is also important to explore the perceptions and attitudes of the research establishment with regard to Black MSM participation in HIV prevention research. Lastly, community engagement must be a priority for policymakers, funding institutions, and researchers. It is important that health policy, funding priorities, and research questions are shaped with full participation of people who share the demographic and commitment to the communities who are the focus of the research. j

About the Authors Michele Peake Andrasik and Steven Wakefield are with the HIV Vaccine Trials Network (HVTN), Fred Hutchinson Cancer Research Center (FHCRC), Seattle, WA. Christian Chandler is with the University of South Florida, Morsani College of Medicine, Tampa. At the time of writing and data collection, respectively, Borris Powell and Damon Humes were with HVTN Legacy Project, FHCRC, Seattle. Katharine Kripke is with Futures Institute, Washington, DC. Daniel Eckstein is with NOVA Research Company, Bethesda, MD. Correspondence should be sent to Michele Peake Andrasik, HIV Vaccine Trials Network, Fred Hutchinson Cancer Research Center, 1100 Fairview Ave N, E3-300, PO Box 19024, Seattle, WA 98109 (e-mail: mandrasik@ fhcrc.org). Reprints can be ordered at http://www.ajph.org by clicking the “Reprints” link. This article was accepted September 3, 2013.

Contributors M. P. Andrasik was lead author and focus group facilitator, and participated in data coding and analysis. C. Chandler and D. Humes participated in data coding and analysis, and writing. B. Powell was a focus group cofacilitator, and participated in screening, recruitment, and writing. S. Wakefield participated in focus group guide development, peer debriefing of themes, and editing. K. Kripke and D. Eckstein participated in focus group guide development and editing.

Acknowledgments This research was supported by the National Institutes of Mental Health (grant 3U01AI068614-04S1 to Larry Corey). This publication resulted (in part) from research for the Leadership Group for a Global HIV Vaccine Clinical Trials Network supported by the National Institute of Allergy and Infectious Diseases (grant 5UM1AI068614). We would like to sincerely thank the organizers of the 2011 and 2012 National African American MSM Leadership Conference on HIV/AIDS for their assistance and support of this work. Many thanks to all of the key opinion leaders who volunteered their time and personal information to this study.

Human Participant Protection Because of the sensitive questions asked in the focus group, a waiver of written consent was requested. Participants read a consent script while the facilitator read it aloud and each participant provided verbal consent. This study received approval from the Fred Hutchinson Cancer Research Center institutional review board under protocol 1492 (approval number 4950, revision 65).

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American Journal of Public Health | April 2014, Vol 104, No. 4

Bridging the divide: HIV prevention research and Black men who have sex with men.

We obtained contextual information regarding documented barriers to HIV clinical trial participation among Black men who have sex with men (MSM), and ...
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