Having witnessed firsthand how medical providers sometimes fail to share the necessary knowledge that people need in order to make informed decisions about their sexual health, Natalie L. Wilson, Ph.D., D.N.P., M.P.H., APRN-BC—an assistant professor at University of California San Francisco’s School of Nursing—has turned to TikTok and other nontraditional outlets to bridge the dissemination gap.
While studying in her Ph.D. program, Wilson asked for an HIV test from her doctor, who told her that she didn’t need one. This despite the fact that it was not his place to make that call, and that African-American women make up the majority of seroconversions among women in the U.S. Soon after that experience, she asked to be put on pre-exposure prophylaxis (PrEP) and was surprised to discover that her doctor did not know how to prescribe it.
Those encounters made her consider how the health care system was failing patients, particularly African-American women, due to bias and a lack of information. “I can’t tell you how many patients I’ve had who are heterosexual, Black women who could actually afford to pay out of pocket for their medications,” Wilson says.
Sadly, many Black female patients are not aware of their vulnerability to HIV, and by the time they find out, it is too late because they have already tested positive for HIV. “We’ve got to stop it before it gets to that point,” Wilson says. “And I really believe that we can totally stop all new infections in our lifetime.”
Helping Young People Talk to Each Other About Sex
With that goal in mind, she developed a program geared toward high-school and college-aged students that would work with them to create HIV education programs for people their age, and then support those participants in building a blog and delivering that information. A second component to this idea involved helping these students get passports so that they could travel through the Caribbean and Africa to educate and exchange information with people their own age in those regions.
“They would become education leaders not only here in Oakland, but international educators as well,” Wilson says. She was also interested in the idea of expanding the perspectives of these potential ambassadors, especially because very few young Black Americans have passports or are given the opportunity to travel to other countries.
The COVID-19 pandemic shut all of that down.
While thinking of ways to salvage the idea, Wilson realized that she could pull the project off by converting it into a TikTok challenge. Wilson says that the idea to use TikTok came from seeing older people “having a great time and just being real on the app, like in a community.”
“It was so much more supportive than Facebook,” she says, “and I realized that I was spending hours of my time looking at the content to take my mind off of what was going on in the world. Plus, I was learning how to make my own hair products and to fix things around my house—so I thought, ‘This might be the platform to reach a lot of people out there.’”
The idea clicked for her after learning about the group of young activists who sabotaged President Trump’s June campaign rally in Tulsa, Oklahoma, largely by coordinating with each other on the app. From there, she wrote a grant proposal to AIDS 2020 for $2,000 and paired up with a collaborator in the local area.
The idea was accepted, which allowed Wilson to put significant money toward prizes, with the only stipulation being that those who won the challenge put their winnings toward something college-related; be it paying for books, rent, or pizza.
Tapping further into popular culture, Wilson says that she recruited two colleagues to join her as judges and put participants on teams who received coaching on their submissions and presentations, much like the mentorship that contestants receive on the reality television singing competition, The Voice.
“Some of the content was good, but it was rushed, so the judges went back in and had them make adjustments, such as leaving a paragraph of information up for longer than three seconds. Or coaching them on speaking to people in their peer group, because we’re not doing so well at reaching young African Americans or people in LGBTQ community.”
Bad Messaging Dooms Sexual Education
When asked to think about why this information frequently fails to reach the people who need it most, Wilson thinks one reason might be that “people don’t change their behavior until it affects them. Another reason might be the actual messaging. We are not getting the right message out to the world. So now that has me thinking about what we can create that people will value enough to take action.”
This focus on effective communication to young adults is why Wilson is turning to participants in that demographic to participate in crafting the message “out of their brains. They have the cognition to come up with a message that people their age will like.”
For many young people, the first time that they receive a sexually transmitted infection (STI) test is at college, which means that this generation of budding adults is turning to Google for information about sex—a potential crap-shoot—friends who may not know what they are talking about, or cringe-inducing safe-sex videos that frequently fail because they turn viewers off.
Recalling awkward conversations about sex with people in her family, Wilson says, “This is why it is important to encourage the younger generation to speak to each other about sex with accurate knowledge; because they speak the same language.”
Using new media and technology like TikTok is a reminder that care providers must constantly revamp and update their messaging if they want to provide young people with the information they need to guard their sexual health.
Following the completion of this trial phase of her project, Wilson says that she is thinking about expanding participation to include people from across the nation rather than limiting it to California’s East Bay region.
More than starting a new conversation about HIV, if the project keeps even one person safe from seroconverting, for Wilson it will have been worth the effort.