When Strangers Diagnose You Online
On platforms like Reddit, people are seeking opinions on anything from skin conditions to syphilis
From Baltimore to Beverly Hills, cases of the most commonly reported STDs have reached an all-time high. And in bathrooms and bedrooms across America, people are responding by dropping their pants, sliding a smartphone down there, and uploading photos of their private parts to the internet.
“Is this herpes?” asked one user on Reddit’s STD forum, including a photo of a rash on her bikini line.
“Just want to know what this is,” pled another, alongside several close-up photos of small bumps on and around his penis and scrotum.
Welcome to the world of online crowd-diagnosing, where communities like r/STD are attracting growing numbers of people seeking opinions on anything from skin conditions to potential syphilis from anonymous strangers on the internet.
According to a recent study in the Journal of the American Medical Association, online crowd-diagnosis is trending. The number of monthly posts to r/STD doubled in just the past year; more than half of those posts asked the community for a diagnosis, and of those, a third included a photo. And it’s not just happening for STDs: People have long used social media to ask for advice on how to treat their baby’s mysterious rash or cope with thoughts of suicide. The researchers’ findings have raised questions about why people are doing this, along with surprising answers about what this behavior might mean for public health.
“Everybody talks about Dr. Google, but the reality is that search engines are old hat,” says John Ayers, vice chief of innovation at the UC San Diego Division of Infectious Disease, who co-authored the study with data scientist Alicia Nobles. “People rely on social media because they want real interactions with real people. That migrates to seeking diagnoses online.”
To study the phenomenon, Nobles and Ayers imagined the most unlikely conditions for which people might seek the wisdom of the crowd. In Ayers’ words, “People taking pictures of their you-know-what and asking ‘What is this?’ Even in that rare extreme case, we found crowd-diagnosis exists.”
Another reason users flock to social media is speed: Nearly 90% of posts on the STD forum received a response, the researchers found, often in less than a day. Compare that to an average wait time of 24 days for new patients to get in to see a doctor. In the case of STDs, anonymity is another motivator. “Despite STDs being super, super common, it’s still stigmatized,” explains Nobles, the study’s lead author and a research fellow at UCSD’s Department of Medicine. She adds that on any given day, there are almost twice as many Americans walking around with an active HPV infection than the flu. “People may be going on there because they feel more comfortable speaking with a stranger than their doctor.”
“With the doctor there is always a fear of being judged, dismissed, or feeling minuscule,” writes Reddit user Lime_Soda678, described as an 18-year-old gay Nigerian man living in Canada. After hooking up with a few guys from Grindr, he panicked about having possibly contracted HPV and/or HIV but felt he couldn’t talk about it with his conservative parents or his family doctor. In the r/STD forum, he found empathy, and he credits the community with educating him on things he didn’t know before.
“Some people on the Reddit aren’t exactly professionals, but as I continue to learn about STDs, I have gained some higher knowledge, which I share with people who are new to the community,” he writes. “I guess it works in that cycle: We’re all just sharing the knowledge we have acquired, which is, most of the times, correct.”
Public health officials would take issue with that claim. The JAMA study didn’t look at the accuracy of the diagnoses being meted out on forums like r/STD, but you can imagine they wouldn’t all pass muster with the CDC. (One user suggested treating genital warts with lizard feces.)
“From a public health perspective, it’s incredibly concerning,” says Adriane Casalotti, chief of government and public affairs for the National Association of County and City Health Officials (NACCHO), which represents 3,000 local health departments across the country. She notes that the vast majority of people who have an STD don’t have symptoms anyway. “So, off the bat, crowd-diagnosing really misses a great deal of cases,” she says. Though easily cured with antibiotics, STDs like gonorrhea and chlamydia, when left untreated, can lead to infertility, while syphilis can cause neurologic and ocular infections, as well as miscarriage and stillbirth.
“Everybody talks about Dr. Google, but the reality is that search engines are old hat.”
Stranger still, about one in five posts on r/STD were from people who had already been diagnosed by a professional and were looking for a second opinion, the study found.
“This could indicate that there’s more health care providers can and should be doing to better engage with our patients to process those things in the room, versus folks feeling like they have to go and second-guess what their diagnosis was,” Casalotti acknowledges. “It also points to the continued need for comprehensive, evidence-based, nonjudgmental sex education so people feel more confident in their health literacy.”
This is where researchers like Nobles and Ayers see opportunity. While the conventional response to those who consult “Dr. Google” is scolding disapproval, there’s a lot to be gained by studying the health-related questions people are posting and searching about on the internet. Data from search engines and social networking sites has already been used to predict things like flu outbreaks and spiking demand for IUDs after the 2016 election.
“This is a naturally organic thing that’s happening, and by being aware, we can intervene,” says Ayers, citing Reddit’s SuicideWatch forum as a hopeful example. There, volunteers triage posters and guide them to professional, lifesaving help. “That’s had a tremendous benefit to society,” he says. “If we could do this for other conditions, that’d be amazing.”
Crowd-diagnosing isn’t always dangerous; a lot depends on where it’s taking place. CrowdMed, for instance, invites patients with mysterious symptoms to submit their case for review by a global community of “medical detectives,” which includes doctors, medical students, physician assistants, chiropractors, scientists, naturopaths and “health care aficionados,” and each case is overseen by a licensed physician. Even r/STD has begun awarding “flair” to contributors who can prove they have some kind of professional bona fides. (Its current moderator is identified as a medical laboratory scientist.) But the same can’t be said for that Facebook group your aunt loves to hang out in whose moderator believes in curing autism with essential oils.
“There has never been a better time to access high-quality health information and advice online,” says Adam Dunn, a professor at the Centre for Health Informatics at Australia’s Macquarie University. “[But] people find it challenging to distinguish between evidence and misinformation, and some communities may be very unbalanced in terms of the quality of advice given.”
Ayers imagines a future where medical professionals go beyond just studying such communities and actually getting involved in them. “Typically, doctors spend eight to 15 minutes per patient interaction,” he says. “If we had a trained professional working a platform like this, they could be evaluating 10 to 15 patients in that same time frame.”
Some public health experts agree that remotely triaging patients this way could, in theory, make online crowdsourcing better and reduce the burden on the health care system, but they wonder if it’s scalable or sustainable. What about privacy? And how would you pay for it? State and local public health departments are already strapped from a decade-long decline in funding and staffing. Still, many admit the establishment should be doing more to meet patients where they are, rather than waiting for them to come to a traditional health clinic.
“What we’re doing now clearly is not working, [but] the health care community is afraid to step outside the box,” says Charlotte Gaydos, a professor in the Division of Infectious Diseases at Johns Hopkins University. She’d like to see public health departments doing more outreach and getting free at-home STD testing kits in the hands of those who need them. (Gaydos’ IWantTheKit program lets residents of Maryland, D.C., and Alaska do just that.)
In the meantime, people will continue going online for recommendations on what to do about their genital warts with the same ease they bring to browsing Yelp and TripAdvisor. For Reddit user allischa, contributing to r/STD is a way to support others who are dealing with the same health issues. But she recognizes such forums aren’t the only answer.
“I wish these communities didn’t have to exist,” she writes. “I wish everyone had access to free/cheap/fast quality health care without being shamed/going bankrupt. When it comes to STIs, ignorance is not bliss. It’s a public health hazard.”
“This is a cry for help from the public,” echoes Nobles, the study’s author. “They’re obviously not getting what they need from our current system.”