Beware social media’s medical misinformation

A medical journal article this week warns that:

…social media posts on medical tests with potential for overdiagnosis or overuse may be overwhelmingly misleading and fail to mention potential harms, indicating an urgent need for effective regulation to protect the public.

If overdiagnosis is a new concept to you, here’s how the researchers define it:

Overdiagnosis and overuse are now recognized as major threats to human health, causing harm and waste and diverting resources from tackling underdiagnosis and undertreatment. Overdiagnosis happens when generally healthy people are diagnosed or labeled with a condition or disease that would never cause them harm. Evidence is increasingly revealing that early detection tests are double-edged swords that can save lives for some but bring unnecessary diagnoses for others.

It’s an interesting study. Researchers analyzed about 1,000 posts on TikTok and Instagram over about a 10-year period. They focused on posts that discussed full-body magnetic resonance imaging, the multicancer early detection test, and tests for antimullerian hormone (AMH), gut microbiome, and testosterone. The AMH test is a type of fertility test that is an indicator of how many eggs remain in a woman’s ovaries.

Here’s a summary of what they found:

• 87 percent of the posts mentioned potential benefits of the tests;

• Only 14 percent mentioned any potential harms;

• 6 percent mentioned overdiagnosis or overuse;

• 68 percent of those who posted - the social media account holders - had financial interests (e.g., advertisement or selling of test, discount code, paid partnership or sponsorship noted, influencer discussion of receiving a free test);

• 51 percent encouraged readers to take action and to get the test

• 34 percent used personal anecdotes (Remember: the plural of anecdote is not data!)

• Only 6 percent explicitly cited evidence.

My HealthNewsReview project, which analyzed 2,660 news stories about medical interventions (including tests) over 16 years, showed a majority of stories emphasized or exaggerated benefits and minimized or totally ignored potential harms.

A 2021 study focused on news stories only about “early detection tests” - blood-based liquid biopsy tests for cancer(s), 3-dimensional mammography for breast cancer, Apple Watch Series 4 electrocardiogram for atrial fibrillation, blood biomarker tests for dementia, and artificial intelligence technology for dementia. It found that news coverage “emphasized benefits far more than harms, and the risk of overdiagnosis received little coverage.”

But this new study was about social media - not traditional journalism. Social media has been shown to often mislead readers about food, drink, and medical products. In the Wild West world of social media, anybody can claim just about anything, with no guarantee that anyone has exercised any editorial oversight. Some “oversight” that may have once existed has now been abandoned - for example, Mark Zuckerberg announced that Meta (which owns Facebook, Instagram and WhatsApp) would end its fact-checking program on social media posts.

The researchers said the social media account holders whose posts were analyzed had a combined following of more than 194 million readers. So, yeah, this is kind of important.

You can access the full paper here; it’s not behind a paywall and there is much good discussion in it that I didn’t touch on.

The New York Times published a story about the study that did a good job highlighting key points. It also had two interview quotes that I liked.

Dr. Michael Pignone of Duke University School of Medicine (and a former contributor to my HealthNewsReview site), said:

That’s a tough concept for people to get, that more information could be harmful. To do justice to why more information is not always better oftentimes requires more than 140 characters.

Tara Kirk Sell, who studies misinformation at Johns Hopkins, is paraphrased in the story:

If you come across a post discussing medical tests on social media, ask yourself whether it is trying to convince you of something, rather than just providing you with information, (she) suggested. You should also consider whether a post acknowledges what scientists don’t yet know about a particular test or topic.

Sir Muir Gray famously wrote: “All screening programmes do harm; some do good as well.” The data presented above show the imbalance in many news stories - and now in social media posts - with the emphasis out of whack with reality most of the time.

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