“Feeling paranoid about that one night stand? Condom broke? Got some scary blood results back?” read the details for the popular Reddit community r/STDs.
The community encourages its more than 10,000 members to share stories, concerns and questions about sexually transmitted diseases — and according to a study published Tuesday, they have increasingly done so. But opting for a “crowd diagnosis,” instead of one from a doctor, can put patients and their partners at risk.
Since the subreddit — as the community pages are called — was created in November 2010, there have been nearly 17,000 posts. According to the study, published in the Journal of the American Medical Association, the number of posts significantly increased over time, from just eight in 2010 to 3,375 in 2018.
The posts often include candid pictures of worrisome bumps, lumps and redness on or around their genitals.
“Help! What is this? Is this herpes?” one post reads. Others seek out second opinions after they’ve already been to the doctor. “My results showed ‘HIV-1 Confirmation.’ I have to go back and get another test but I’m wondering is the doc wrong, do you think I have HIV“?
In the study, the researchers focused on a random sampling of 500 posts. More than half — 58 percent — asked the site’s members for a diagnosis. Nearly a third of those included photos of the apparent STD in question.
Anyone who signs up as a member can respond. The majority of requests got answers quickly, usually within three hours, the study found. Nearly 80 percent of requests were answered in less than one day.
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Despite the potential for incorrect or even dangerous medical advice, the revelation that people are asking for help with sexually transmitted diseases online may present doctors with an opportunity to find those in need, and who may be falling through health care cracks.
“People want real interactions with real people, and they can get that on social media,” said John Ayers, the study’s author and vice chief of innovation at University of California, San Diego. And instead of trying to corral patients away from Reddit and back into the clinic, experts should “go to them and help them.”
“Society is not going to change to match the strategy that we as the experts have. We need to pivot. And one way we can pivot is responding to crowd diagnosis,” Ayers told NBC News.
Outside experts agreed.
The study “forces us to acknowledge the world that our patients live in,” said Dr. Jessica Rose, a clinical assistant professor in the department of obstetrics and gynecology at NYU Langone Health in New York City. “It’s not as simple as what the textbook says.”
Rose, who was not involved in the new research, suggested it’s physicians who need to alter care to meet the needs of a generation seemingly more comfortable sharing sensitive health concerns online than in a doctor’s office.
“Why do our patients not trust us? Why are they trusting these masses who may or may not have medical education?” she asked.
Crowd diagnosis may also provide a level of comfort, while reputable websites like that of the Centers for Disease Control and Prevention may feel more clinical, sexual health experts said.
“Many websites with great information don’t seem as user-friendly when you are scared and it is 3 a.m.,” said Dr. Jen Gunter, an OB-GYN and author of “The Vagina Bible.”
“Medical jargon is great for academic publications, but when we communicate with the public we need to listen to what they are asking and also learn how they can best receive that information,” Gunter told NBC News.
Ayers said that there’s an opportunity for doctors to partner with social media platforms to find people in need of medical attention, triage them and refer them to reputable and user-friendly resources.
“Imagine if we were doing that across social media looking for all sorts of conditions, what kind of positive impact we would have?” Ayers asked.
Physicians still stress the importance of getting accurate diagnoses and treatment as early as possible for sexually transmitted infections from qualified medical professionals.
Any unusual discharge, genital irritation or pelvic pain may be cause for concern, Rose said, adding that proper treatment protects against long-term physical consequences like infertility, and helps stop the spread of sexually transmitted infections.
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