Ties that Find: Building Community-Research Partnerships in New York City
For nearly two decades gay men's bodies and minds have been prodded and probed by psychologists, epidemiologists, substance use researchers, gay pundits, dilettantes and critics all trying to figure out how to lower HIV risks among gay and bisexual men and how to keep HIV-positive men healthy.
And the challenge remains. The Center for Disease Control and Prevention (CDC) reports that in the 32 states with confidential HIV reporting, data show that substantial numbers of MSM, especially young men are still being infected. According to a 2001 CDC public health alert, in 1999, male-to-male sexual contact accounted for 46% of reported HIV infections among adolescent males aged 13-19 and 51% of cases among men aged 20-24. Ongoing studies also show that both HIV prevalence (the proportion of people living with HIV in a population) and risk behaviors remain high among young MSM. In a sample of MSM 15-22 years old in seven urban counties, CDC researchers found that, overall, 7% already were infected with HIV. Higher percentages of African Americans (14%) and Hispanics (7%) were infected than were whites (3%). Despite these high numbers, some MSM communities have seen HIV rates shrink, that's the good news. Though many feel the good news does not outweigh the alarming increases of new infections especially among younger MSM and MSM of color.
From Community Research to Community ActionPublic and private health responses to the HIV/AIDS epidemic among MSM are frequently (though not always) guided by scientific and academic research. It is more difficult to carry out research among MSM than other groups because so many in the population conceal themselves to avoid discrimination and prejudice.
The useful research findings on HIV prevention and care can directly benefit community agencies serving gay and bisexual men. But while there is promise in much behavioral HIV research many investigators will tell you that it is not easy for community-based programs to translate and put into practice the beneficial findings of research studies or to communicate them to the gay/lesbian community and networks of men who have sex with men but who do not identify as gay or bisexual. As in biology, what works in the "test-tube" of behavioral research may not work well in the "body-social." Even behavioral research that staff in community agencies are enthusiastic about is difficult to incorporate into interventions and services as pre-existing prevention strategies, low budgets, small staff and even cultural and social pressures may discourage it. In fact, many AIDS service organizations, in response to the urgency of the epidemic, rushed to develop programs that they had not field tested for effectiveness.
Despite these and other barriers, social science research does influence and guide HIV interventions and, over the long run, has had measurable success at reducing new HIV infections. Even with science's success, HIV prevention remains a moving target requiring continuous monitoring and research.
For example, while HIV prevention efforts have lowered HIV among many groups of white MSM, HIV rates continue to rise disproportionately among MSM of color. Advances in treatment and shifting cultural viewpoints highlight the extent to which HIV prevention is a moving target. For example, recent research shows that the efficacy of highly active anti-retroviral therapy (HAART) at increasing people's lives has reduced the fear many HIV-negative MSM men have about becoming infected and increased the amount of risky sex MSM are having. Recent studies of pharmaceutical advertisements showing healthy people engaged in athletic activities have also contributed to that trend. The success of HAART therapy and pharmaceutical advertising is probably also contributing to the rise in "barebacking," the practice of intentional unprotected anal intercourse.
Another important element contributing to the increase in unsafe sex practices among MSM is "HIV fatigue." Many prevention messages and strategies have stopped working. These changes in attitudes of MSM toward HIV show us how important it is for public health officials and researchers to constantly research why and then invigorate prevention strategies and messages based on findings that show which prevention and care approaches have stopped working. Equally crucial, researchers must maintain ongoing research partnerships with community agencies and organizations because it is these relationships that disseminate new information and establish innovative services.
A Model for Community Research PartnershipsThe Center for HIV/AIDS Education Studies and Training (CHEST) in New York City is a new research organization whose central mission is to integrate community research with community practice. Other research organizations have implemented community partnership models with varying degrees of success. Such partnerships are vulnerable when staff responsible for maintaining them leave the agency, lose contact with partnership colleagues, or projects lose funding. To keep research-community partnerships vibrant, staff in the research agency must continuously cultivate ties with its community colleagues. CHEST is in the process of developing strong community-research partnerships in New York City by carrying out formative and relevant research in New York, (such as barebacking, alcohol use and party drugs) and by constantly building working relationships with community agencies, bars and clubs, and gay men who participate in these venues.
CHEST is located in the Chelsea neighborhood of New York City and is affiliated with New York University, Hunter College and New Jersey City University. CHEST staff is comprised mostly of HIV-positive and negative gay behavioral researchers; being part of the community they do research among provides CHEST with crucial credibility among MSM and agencies that provide services to them. That is not so for many research organizations whose detachment from the communities they study have hobbled their ability to develop relationships and transfer new knowledge.
The co-directors of CHEST, Jeffrey Parsons, Ph.D. and Perry Halkitis, M.S., Ph.D. began the center in 1996 with a CDC grant to look at HIV-risk behavior in HIV-positive MSM. According to Parsons, "the goal of CHEST has always been to understand the needs of a particular population, and better understand behavior -- then, our focus changes to letting providers and community agencies know what we have found, so the information learned through our research actually gets used to help people." The center has grown considerably since then from one to four major studies and one collaborative study with Mount Sinai Medical Center.
CHEST's on-going studies focus on MSM issues related to HIV including adherence to protease inhibitors, HIV prevention for HIV-positive and HIV-negative gay and bisexual men who use party drugs and alcohol. The research is formative, meaning it investigates issues that have not been studied before. It is odd that HIV researchers in a city with some of the highest HIV incidence rates among MSM in the United States have not conducted behavioral research examining the effects of party drugs and alcohol on the HIV risk of MSM, but they have not.
Being part of the community helps CHEST studies stay "ahead of the curve" on issues that affect the HIV risks of gay and bisexual men. "Because we are immersed in and part of the community we study," said Halkitis, "we see trends, changes and events as they occur."
"This, in turn, guides our thinking of what matters to gay and bisexual men and what is affecting their lives. Our work is driven by what gay and bisexual men are doing, saying and living. Our work is not like that of many behavioral researchers in that it is not conducted in an ivory tower. We truly do applied research."
CHEST's recent application to the National Institutes of Mental Health to study barebacking is an example of this. Barebacking is growing in popularity among gay and bisexual men but so far there is systematic investigation of why this is so and what potential dangers it might bring. CHEST's proposal is the first of its kind and it is generating considerable interest at the federal levels.
Community EffortsIn addition to carrying out research, CHEST's monthly community research presentations have successfully drawn in many people from the gay research community and the gay community. CHEST has also developed strong relationships with local gay press organizations. These efforts are successful, in part, because the agency works to ensure that its topics are relevant to both LGBT people and researchers. Two of New York City's major party promoters, Marc Berkeley and John Blair, also promote CHEST's community presentations on their clubs' Web sites. Both club promoters are strong supporters of HIV research and interventions among gay and bisexual men. Their efforts have been instrumental in helping CHEST stay connected to many gay and bisexual men in New York City.
If you are interested in participating in any of CHEST's research, please contact us at 212-206-7919. Project A+ ext. 302; Project PILLS ext. 233; Project BUMPS ext. 303 and Informed Choice for Men 1-888-256-8718. If you would like CHEST to present the findings of its studies at your agency, or would like to volunteer, call 212-206-7919 ext. 225.
Paul Galatowitsch, Ph.D. works with the Center for HIV/AIDS Educational Studies and Training (CHEST).
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