Roundtable Engages Community in Fight Against HIV/AIDS
Researchers and community activists discussed the challenges of collaboration and ideas for maximizing impact.
Community members with a stake in the fight against HIV/AIDS gathered with University of Miami Miller School of Medicine researchers and physicians working on prevention, treatment and cure initiatives to discuss the barriers they face when collaborating.
The two-day community roundtable series drew more than 125 people for presentations, panel discussions and workshops on current research and best practices for achieving their common goal of fighting the epidemic.
The event was hosted by the Center for Aids Research (CFAR) at the University of Miami Miller School of Medicine, along with HEIDI (the HIV/AIDS and Emerging Infectious Diseases Institute), CHARM (the Center for HIV and Research in Mental Health) and AETC (AIDS Education and Training Center), the main HIV centers at the university working to advance multidisciplinary research, care and outreach.
What a Cure Means to the Community
“We want to engage the community and understand what a cure might mean for someone living with HIV,” said Mario Stevenson, Ph.D., professor of medicine in the Miller School Division of Infectious Diseases, co-director of Miami CFAR and director of HEIDI, in his opening remarks. “We hope this forum will create awareness and a way to engage the community so we can do a better job of getting our discoveries out there and reaping the benefits of those discoveries in our community.”
Steve Safren, Ph.D., a University of Miami psychology professor and director of CHARM, echoed the importance of community engagement.
“There is no point in doing research unless it is really relevant and meaningful to the community it is intended to be working with,” he said.
These organizations have a proven track record of making meaningful differences in the local community, but they face an ever-increasing battle. Florida has among the highest rates of new HIV cases, with the city of Miami accounting for one-third of new HIV diagnoses in the state.
Update on Latest HIV/AIDS Research
Candice Sternberg, M.D., an assistant professor of clinical medicine in the Miller School’s Division of Infectious Diseases who focuses on HIV prevention and treatment in the Haitian community, presented her research on how best to deliver pre-exposure prophylaxis (PrEP) to the Haitian community.
Primarily through interviews, Dr. Sternberg learned that, while there is a large interest in HIV prevention, there is both a lack of knowledge and a concern about stigma.
These findings, published in the Journal of Racial and Ethnic Health Disparities, also point to the church as a major source of information for the community, leading to a second study on the role played by churches.
“In our research, it is very important to partner with the community every step of the way,” Dr. Sternberg said. “If you don’t engage the community organizations in the right way, you can’t subsequently do the next project. There is a lot of distrust of researchers because of the way we’ve done research in the past.”
Continuing the Conversation
During a panel discussion for Project SHARE, a forum that brings researchers and community members together to discuss current research and the lived experiences of the community, the panelists continued the discussion of ways to increase PrEP uptake.
If we aren’t responding to what the community says is important, we aren’t really responding to the virus.
—Dr. Deborah Jones Weiss
Panelist Michèle Jean-Gilles, Ph.D., a Florida International University research associate professor, discussed the stigma many Haitians attach to mental health and ways practitioners can overcome this skepticism. Micaelle Titus, executive director of the Community Health and Empowerment Network, touched on opportunities to improve the way the Haitian community receives information on options like PrEP. She used, as an example, explaining to women that PrEP allows them to take control of their health and not rely on men to protect them from the virus.
Exploring Relationship-Building Strategies Together
Sonjia Kenya, Ph.D., professor of medicine and public health at the Miller School and associate director of the Behavioral Science Core for CFAR, led a panel discussion with longtime community partner Nathanial Joseph on building relationships between researchers and organizations. The two have worked extensively together in Liberty City, where Dr. Kenya leads street-based interventions addressing HIV disparities among Miami’s Black population and Joseph serves as community liaison manager at Liberty Square Community Center.
After detailing their teamwork – Joseph helping to organize monthly community engagement events and a block party for World AIDS Day, Dr. Kenya showing support at a resident meeting with developers and teaching chair yoga to locals – Joseph led a game of “Simon Says” adapted specifically to the audience that demonstrated the importance of community and researcher partnerships.
Jessica Salzwedel, senior program manager of research engagement at the AIDS Vaccine Advocacy Coalition (AVAC), facilitated workshops for community members on setting advocacy priorities, building effective community leadership and measuring engagement to build the case for funding and access. Researchers and activists alike appreciated the opportunity to reconnect and learn from one another.
“Community-engaged research means not all the ideas we have are great ones, and they can be informed by the community,” said Deborah Jones Weiss, Ph.D., a professor of psychiatry and behavioral sciences and co-leader of the MWCCS, the largest and longest running HIV research cohort in the country, and the co-director of both CHARM and CFAR’s HIV and Women Program. “If we aren’t responding to what the community says is important, we aren’t really responding to the virus.”
Research reported in this publication for CHARM was supported by the National Institute of Mental Health of the National Institutes of Health under Award Number P30MH133399. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Tags: CFAR, Dr. Candice Sternberg, Dr. Deborah Jones Weiss, Dr. Mario Stevenson, Dr. Sonjia Kenya, HIV PrEP, HIV prevention, PrEP