Community-Based Participatory Research: Addressing Ethics, Empowerment and HIV Health Disparities

Institutions need to familiarize themselves with community people that can help them. You don't want to get somebody that is not a people-person or that does not relate well to the community that you're trying to get information from. A lot of times, researchers are not people-people.

-- Pat Kelly, PWN-USA Research Team, South Carolina

Social determinants of health -- complex structural forces such as poverty, patriarchy and racism -- are responsible for some of the more egregious and challenging barriers to ending the HIV epidemic. Community-based participatory research (CBPR) is an approach that can address social determinants of health by interrupting cycles of powerlessness in vulnerable communities. The linchpin of this approach is engagement of the groups more affected by an issue in research on understanding that issue.

CBPR methods are especially well suited to addressing health disparities in communities that are historically marginalized and underrepresented in research. One such population is young transgender women, who are extraordinarily vulnerable to becoming HIV positive. There is no evidence-based prevention intervention on the Centers for Disease Control and Prevention's current roster geared toward this group. Into that void, Robert Garofalo, M.D., M.P.H., and colleagues brought LifeSkills: an assets-based intervention delivered in a multi-session, group-based format, emphasizing skills that young transgender women can employ across their lives based on their social realities. "The idea was to empower them to lead healthier lives, broadly," explained Garofalo, who is head of the division of adolescent medicine at Ann & Robert H. Lurie Children's Hospital of Chicago, "and that empowerment would produce some results around HIV prevention."

Though the findings are preliminary, LifeSkills is poised to become the first-ever well-supported, evidence-based intervention for HIV prevention among young transgender women. Every aspect of this 13-year endeavor was grounded in community-based participatory practice. Young transgender women were hired as hospital staff members and involved in all aspects of the study: procedures, design, recruitment and writing the curriculum, with support from a multidisciplinary research team. Of the 233 transgender women between the ages of 16 and 29 who enrolled in the study, the result was a greater than 20% difference in reduction in condomless sex acts from baseline between the active and control arms.

"The young women who were part of this project owned it," Garofalo said in his presentation of LifeSkills at AIDS 2016, "and they delivered the goods."

Women living with HIV of all ages and gender identities are underrepresented not only in HIV research, but at virtually all tables where decisions are made that impact their lives. Positive Women's Network-USA (PWN-USA), a national membership body of women living with HIV, recently contributed to the research literature with a CBPR project examining what keeps women connected to HIV care and what barriers they face to staying in care.

The study was undertaken in light of repeated attempts in recent years to eliminate Part D of the Ryan White HIV/AIDS Program, the only federal funding stream focused on women and families living with HIV, which covers medical care as well as supportive services such as transportation and food support that, for many underinsured women with HIV, make care access possible.

Seven two-person research teams, distributed across key regions of the U.S. and comprising a diverse group of women living with HIV, were trained in CBPR research methods and surveyed 180 other women living with HIV.

Key findings of the study included:

• Inconsistent delivery of sexual and reproductive health services (including a shocking lack of counseling around the benefits of treatment as prevention).

• High levels of unmet need for mental health support.

• Transportation challenges, family responsibilities and financial concerns posing significant structural barriers to remaining in consistent care.

"As a part of the community, the idea is that they will be able to generate more accurate responses, and be able to reach communities that are less accessible to researchers that conduct research from a more institutional space," explained Arneta Rogers, legal fellow at PWN-USA, who presented the group's poster at AIDS 2016 in Durban, South Africa.

One of the two main pillars of CBPR is ethical: a response to the history of researchers exploiting marginalized communities for their research participation, providing no benefit -- and in some cases, such as the notorious Tuskegee Syphilis Study, causing damage -- to those communities. "Researchers need to stop doing research and not sharing the information with the people that they're doing the research with," Kelly commented. "I would hope that you're doing it so that you can make some type of change that will impact the community that you're serving."

Garofalo has observed that some researchers who have traditionally worked with men who have sex with men (MSM) are pivoting to work with transgender women now that interest and funding opportunities have increased. He expressed a balance of enthusiasm and wariness at this development. "The issues transgender women deal with ... the way they are disenfranchised from health care systems and from the community, are so different from MSM," said Garofalo. "The people who do this work need to challenge themselves: to either not do it or to connect themselves with systems that really understand what makes these young women tick."

The other pillar of CBPR is community empowerment: Community-based researchers not only contribute in significant ways to the health and future of their communities by exploring and strategizing solutions to vexing concerns, but also build valuable skills and relationships and are compensated for their time. Both study authors stressed that the research teams they supported were not volunteers. "If you want to do one of the most important things to help trans women, give them a job," said Garofalo.

CBPR methods may also produce research that is of greater value to researchers and community members alike. The results of the PWN-USA study are already being used to drive policy change at the organizational and regional levels. "I've been trying to tell [my regional HIV planning council] for years that we need to focus on women ... so that we can get a women's workgroup," Kelly remarked. "The data from the research will definitely prove that it is needed."

CBPR practices represent an important shift in relationships and power dynamics between "research subjects" and "research experts" -- and, ideally, a move toward greater respect and cultural humility on the part of traditional researchers engaged in this work. Rogers spoke of the favorable reception that members of the research teams, who were mostly black women, have experienced when presenting their findings at Ryan White planning councils and other advisory bodies.

"The data themselves demonstrate the disparities along race and socioeconomic status," Rogers noted. "Having it come from the communities where those disparities exist is a tool in confronting some of those disparities on a community and a systemic level."