A breast cancer diagnosis sent her to Reddit. Here's what she found.

AUSTIN — Alex Bell is a millennial. The first generation to really grow up with the internet. Now, some members of this group are hitting their mid-30s and experiencing major health changes. Bell knows better than most. She was diagnosed with Stage 3 breast cancer at 32 years old. She turned her illness into action and became a moderator for r/breastcancer , a support and information space on Reddit for those diagnosed with the condition.

"It changed my life, and I've learned so much about how patients approach health care in medical decisions," the now 39-year-old said during a panel during SXSW in Austin in March.

But not all health information on social media, let alone the internet at large, is credible. Wherever you look, someone is lying to you – or at least misleading you – about your health. Influencers on TikTok tout the benefits of vitamins, supplements and at-home cures, often without a medical license or necessary context. Looking for accurate medical information online has grown more complicated with the advent of AI, where it's easy to ask ChatGPT to play the role of your doctor.

People have been flocking to Reddit specifically to crowdsource health advice; the platform houses more than 700 health communities. Internal data shows the number of views on its health and wellness content rose by 61% the last two years. The moderators ("mods") of each subreddit strive to stay on top of imposters or those who otherwise lack knowledge in these spaces to maintain their credibility.

But even with safeguards like these, is there truly a safe space online to get proper medical advice? Experts say proceed with caution when taking health advice from sources other than your health care provider.

"The first thing I tell people is to ask a simple question: Who is speaking, and what are their credentials? There's a meaningful difference between someone who has spent decades doing peer-reviewed research on aging and someone who has optimized their own health and decided to build a brand around it," says Dr. Eric Verdin , the president and chief executive officer of the Buck Institute for Research on Aging.

Any claims you see on these platforms − Reddit or TikTok or others − should be traced back to their original source. "If a product or protocol is being sold alongside the health claim, treat that as a significant red flag," Verdin adds. "The conflict of interest doesn't mean the advice is wrong, but it should raise your epistemic bar substantially."

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'The best treatment for fear'

It makes sense why people turn to platforms like Reddit for advice. Many Americans don't have primary care providers , and a physician shortage is poised to only get worse. Health insurance costs have increased. "People, more and more, are running into walls," says Jessica Calef, Reddit's director of health. "They can't find quick medical treatment, and therefore they're being sent to these online communities." These include r/AskDocs , r/Nursing , r/WeightLossAdvice and r/WomensHealth .

There's a culture on Reddit of problem-solving and redirecting people to the right resources to answer questions or concerns; the platform doesn't allow paid influencers. The subreddit r/breastcancer, for example, includes plenty of venting about treatment side effects , and sharing personal anecdotes to commiserate. Those fearing they might have breast cancer and seeking advice about that would be in the wrong place.

What happens when people diagnosed with cancer join these groups and share information about "natural" treatment approaches? "At one point we would just pull those down," Bell, now a former moderator, says. "But that doesn't go over very well. You need to take the time to go in and say, 'Hey, this is, you know, not a reputable medical journal.' Or, you know, 'have you looked at this other thing?'"

The fear of treatment causes people to go down these paths, and "the best treatment for fear is the loving community," Bell says.

Verdin thinks people might underappreciate Reddit's value, but cautions to not put it on a pedestal either. "Because the format allows for correction and debate, bad claims often get pushed back on," he says. "It's not perfect – groupthink exists there too – but the crowd-sourced skepticism can be a real corrective force." He still recommends digging for primary sources and talking to a clinician as well.

"Reddit offers 'crowdsourced anecdotes' – it's the digital version of a waiting room conversation," adds Dr. Ravi Tripathi, chief health informatics officer at The Ohio State University College of Medicine. "While it can point you toward helpful resources, it lacks the rigorous peer-review and clinical oversight found in medical sources."

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AI for health care: 'I'm not sure it should be the final word'

Besides Reddit and other social media, people are also relying on AI to get their health information . A new study from The Ohio State University found that, out of more than 1,000 people surveyed, 51% used AI to make an important health decision and didn't otherwise consult a medical professional. Is this a good idea? A bad idea? It's complicated.

Ania Bilski , an emergency room physician and the vice president of Clinical AI at OpenEvidence , thinks AI empowers her patients to ask better questions. "People are coming to me with a cluster of symptoms and a story, and I have to kind of decipher what that could have, what that can mean and what their diagnosis might be," she said on a panel at SXSW. The better they can piece their story together, the better she's able to help them.

Verdin is also somewhat bullish on AI, if someone is looking to "understand a diagnosis, contextualize a lab value, or navigate what questions to ask their physician." It's not ready to tell you, however, what supplements to take or interventions to pursue. "I'm not sure it should be the final word even when it improves further," he says.

As a consumer, it falls on you to "trust but verify" any claims you see, according to Bilski. Whether that's fair to put on an already overwhelmed patient, wrestling with information from strangers on Reddit, influencers and more, that's another story.

This story has been updated with additional information.

This article originally appeared on USA TODAY: Reddit, AI and health misinformation on social media