October 7, 2022 – Where do teenagers and young adults go to talk about sex, sexual health and STDs?
The obvious – routine medical check-ups, meeting up with friends or partners – may become increasingly rare as social media platforms for information and advice. And it seems that researchers and physicians alike are beginning to pay close attention, meeting users where they are – both to observe and to participate in real-time exchanges on sexual health issues, in more even, stigma-free playing fields appear.
It’s a win-win for patients and physicians, offering the opportunity to address and prevent the spread of STD misinformation while helping to reverse the skyrocketing rates of some of these infections in younger people.
Ina Park, MD, an STD physician and professor of family and community medicine at the University of California, San Francisco School of Medicine, says nearly all of her and her colleagues’ patients — particularly in a certain age group — are social media.
“Many have had negative experiences in disclosing their sexual practices to their clinicians, when they felt they were being judged for how many sexual partners they had, or [felt] that having an STD meant being punished for bad behavior,” she says.
This is particularly true for youth from sexual minorities (LGBTQ), whose clinical encounters are all too often compromised by physicians who lack understanding of gender identity issues, or by those who are uncomfortable talking to their patients about sexual health and STDs.
Perhaps this at least partially explains why platforms like Reddit and its smaller, moderated community forums known as subreddits are growing in popularity. At last count, there were even more than 3.4 million Subreddits dedicated to specific topics, including the ‘Ask Me Anything (AMA)” STD subreddit (r/STD), which hosts regular online question-and-answer sessions on sexual health and STDs to a community of 23,000 active users.
Discover and use r/STD
In 2019, a group of researchers from the University of California, San Diego conducted a small study to find out whether people receive medical diagnoses on social media platforms. They chose sexually transmitted diseases as the case study, in part because these infections were becoming more common.
“Our goal was to introduce the concept of crowd diagnosis, where you receive a diagnosis of a clinical outcome from your peers on social media,” said John Ayers, PhD, vice chief of innovation in the Division of Infectious Diseases and Diseases Global Public Health at UCSD and one of the authors of the study.
“When we looked at the data, we saw that hundreds of people went to Reddit and posted a large number of images asking for an STD diagnosis,” he says.
The team’s results were published later this year in JAMA and stressed that of the approximately 17,000 posts, 58% were requests for a crowd diagnosis, of which 31% also included a picture of physical signs of infection. Only 20% of posts asking for a crowd diagnosis were made to get a second option after receiving a diagnosis from a doctor.
Ayers says the key takeaway is that many doctors have a “field of dreams” perspective: “You know, if we build it, they’ll come. But they don’t come, so why don’t we go and help them where they already are?”
He also explains that it is not enough to simply discover that a phenomenon exists (people go online to get a diagnosis), but that by discovering or exposing a problem (possible misinformation), doctors have the opportunity to intervene.
That’s exactly what the American Sexual Health Association (ASHA) wanted to explore when they hopped on an r/STD AMA forum with two experts — Park and a sexologist — and hosted a discussion on STDs. Their goal was to learn what types of information people are looking for, and ultimately to get sexually active people to be tested by that information Yes means test Public awareness campaign.
The session generated 254 comments, and Park and her co-moderator answered 42 questions, most commonly on STD transmission (24%) and STD testing (22%). Other FAQs focused on sexual difficulties (15%) and sexuality (15%), although the AMA also included posts discussing contraception, partner communication, research, prevention and treatment.
“Can oral herpes be transmitted to your partner as genital herpes during sex? How long should a person wait after an oral herpes outbreak before having oral sex?”
This question received 50 upvotes, indicating approval or support for the post from other participants.
Remarkably, the first response to the question came from another user, who recommended the poster visit a herpes organization website in the UK
Park followed with information on how oral herpes spreads between partners during oral sex, the need to wait for the sore to heal before resuming oral sex, and when shedding is most active.
When results and click-throughs indicate results, The ASHA AMA led to the best possible results. The session received a Reddit AMA rating of 5 out of 5 (the benchmark is 4), three community awards, and a click-through rate back to ASHA’s website (and its STD testing campaign) of 45% (beating Reddit’s 10% ). benchmark).
Not everything that glitters is gold
Reddit AMAs are not without risk, and it’s best for those who want STD information to be aware of the pitfalls and red flags.
“One of the things to think about is that an approach like the subreddit contributes to the false narrative that STDs in particular have to be symptomatic to be problematic, which we know isn’t the case.” , explains Dennis Li, assistant professor of psychiatry and behavioral sciences and the health and well-being of sexual and gender minorities at Northwestern Feinberg School of Medicine in Chicago.
“We also have to be careful not to make misdiagnoses and possibly cause damage,” he says, emphasizing that many young people – especially those with justice problems – are affected – have no experience of searching for information through healthcare systems or reputable websites.
“One of the results of our study was that people said they had tested positive for HIV and were asked to come back and have a confirmatory test,” he explains. “But then someone in the community said don’t worry; you are OK.”
“It’s okay to seek advice, but look for validation of that advice,” he says. “Be sure to follow [up] with a doctor or go to a forum where you can actually connect with a doctor.”
Although she attended the ASHA AMA session, Park has strong words of warning for people seeking advice on social platforms, especially when it comes to Reddit, which has the baggage of harboring many trolls.
“Reddit has the highest risk of accepting advice because the person replying to you is often anonymous. You can say their references are x, y, and z, but you really have no way of proving that,” says Park.
“You don’t know who answers your question.”
Personally, she says she uses her real name, both on the few Reddit forums she has participated in and on herself Instagram Page where she shares STD information.
Park also warns users against trying to sell anyone anything, as the information is likely to be somewhat biased by nature. Like Ayers, she recommends taking in the information and reviewing it before making health decisions.
Reputable sources include ASHA, the CDC, Scarleteen (an LGBTQ positive graphic site), Planned Parenthood, and of course, WebMD.
Health experts are calling for new prevention strategies
In September, the CDC held the 2022 STD Prevention Conferencewhich led to news from the Associated Press report who warned of a runaway “STD situation” in the US. In addition to the sad news of rising infection rates for sexually transmitted diseases like gonorrhea, the CDC also reported that in 2021 syphilis cases reached a high not seen since 1948 and that HIV cases were also on the rise.
The key takeaway from this conference was that prevention is critical, especially among at-risk groups such as young people, men who have sex with men, Black and Hispanic Americans, Native Americans, and women.
According to Li, testing should be the best outcome.
“What online resources can really help is break down the stigma surrounding testing, get people asking questions of a doctor or healthcare provider, and help build trust in the medical system — not just in it trust that people are doing the right thing, but trust that you will be cared for in a way that respects you as a person,” he says.
Li sees sites like Reddit as bridging the gap between what you do and knowing when to see a qualified doctor.
But doctors may need to make the leap to social media, if only to track user accounts and learn what people are talking about.
That way, “we can minimize the damage,” says Ayers.