The statistics regarding HIV infection and black women are dismaying: In 2004, HIV was their most prolific killer. In 2014, 64 percent of women diagnosed with HIV were black, according to the Centers for Disease Control and Prevention (CDC). Among black women, the prevalence rate for the virus is 18 times that of white women, primarily through heterosexual sex.
The reasons attributed to this are varied, but it's clear that a response to the crisis is needed. In 2007, the CDC launched The Expanded Testing Initiative. Backed by more grim studies that report 21.4 percent of the half a million black men and women with HIV are undiagnosed, and the rate of transmission is three times higher for those unaware that they're infected, the US health agency invested $102.3 million in 25 states and large cities to conduct testing and increase awareness in the underserved and disproportionally affected population. After three years, analysis of the program found that, by testing early, "3,381 HIV infections were averted from persons newly diagnosed."
Indeed, testing and early awareness are critical; standard antiretroviral therapy (ART), if started as soon as possible, can stop the progression of the disease and prevent transmission. Of course, one would think, the most efficient way to do this is via the internet—especially when it comes to reaching young women. The CDC estimates that young people aged 13 to 24 make up 22 percent of all new HIV diagnoses, and this demographic has some of the lowest rates of STD testing and condom use.
However, a recent study, published in the Journal of the American Medical Informatics Association (JAMIA) by researchers at North Carolina State University, suggests that making information about HIV easily accessible to black women online—specifically on social media—is and will continue to be a challenge. "We assumed that providing information about HIV prevention online would be an effective way of reaching black female college students," the study's lead researcher, Fay Cobb Payton, Ph.D, an associate professor at North Carolina State University, said in a press release. "We thought it would resonate and be accepted, and we were wrong."
Based on the concerns of eleven focus groups made up 60 black women who attended NC State and Penn State, Payton constructed a health education website, myhealthimpactnetwork.org, and corresponding social media accounts. "I started the website with the intention of disseminating health information to black students and students of color, particularly around HIV/AIDs prevention. Part of the reason why was taking a look at national statistics, but also knowing that we're in a digital space now. All kinds of information is being distributed via the web and social media," she told Broadly over the phone. "The idea was that this could be a resource that was relatable and culturally geared toward black female college students—that was the hope." That means, Payton explained, featuring images of black men and women on the site, using minimal clinical language, doing away with stereotypes about black women, and using social media accounts because "this is what we do," one focus group participant remarked.
But in practice, as illustrated follow-up surveys that Payton conducted after the website launched, it became apparent that though the college-aged women were highly engaged with social networking sites, they didn't actually want to engage with HIV/AIDs statistics on the same platform. Payton attributes the lingering stigma around HIV as one of the barriers to leveraging these networks as a powerful public health tool. (The black women surveyed did, however, appreciate that the website was indeed relatable: "They were like, 'Wow, you actually listened to us,'" Payton said.)
"When it came to the social media aspects of the site, a lot of women thought that if they engaged with the content on social media people would make negative assumptions about them. There's something deeper than just putting the information out there as resources," Payton explained. Because a like or a follow on Twitter or Tumblr is tangled with identity—and visible to the public—many women expressed concern about accessing HIV-related information through these channels. "They wanted no part of it," she said. In other words, just as brands have learned that being topical on Twitter isn't always bae, "just because the group is digitally connected doesn't mean that simpler forms of communication are best—that may mean traditional forms of communication," she said.
Her findings have broader implications when it comes to figuring out how to bring sensitive health information to a new generation that is constantly on Twitter. "When you talk about creating these resources for stigmatized conditions—because there is still a lot of stigma around HIV—you need to understand some of the cultural inferences they may have. Particularly in the black community, where the stigma around the disease is heightened," Payton said. She speculates that the stigma around HIV could even be worse online than off. "The critical mass that begins to respond on social media is a lot greater than face-to-face. How do you tackle that? There's a lot of work to be done."