Is social media hurting science … and people?

Is social media a friend or foe of science?

An opinion piece published in JAMA last week suggests the latter:

Protecting the Value of Medical Science in the Age of Social Media and ‘Fake News‘

The authors argue social media poses a threat to science in several ways:

• Unfettered publication of unvetted information by sources of unknown reliability.
• An emerging tactic of decrying disagreeable content as “fake” or part of a “conspiracy.”
• Opponents of evidence-based research who perpetuate misinformation and often auto-validate it within their own “echo chamber.”
• Emotionally persuasive appeals trumping evidence, and hits/likes often conveying a false sense of legitimacy.

Although these threats may seem self-evident to some, their impact is far-reaching and often don’t draw much news coverage. In fact, it’s often news organizations — not malicious rogues or bots or purveyors of “fake news” — that are some of the worst offenders.

The case of hockey legend, Gordie Howe

Back in 2014 Gordie Howe went to Mexico to receive an experimental stem cell treatment for a stroke. Tim Caulfield — one of our regular contributors — is a co-author of a paper that evaluated the ensuing Twitter response. The findings? Nearly 80% of the tweets focused on improvements to Howe’s health. Just 10% of tweets included cautions from scientists, and only one tweet explicitly stated the treatment was unproven.

The vast majority of this Twitter traffic was via NBC and CBS accounts, both of which authored glowing tweets without any words of caution.

“There is a growing body of evidence about the power of such anecdotes and narratives, and how they can overwhelm the actual science,” said Caulfield, a professor of health law and policy at the University of Alberta. “There’s no doubt this is one of the reasons social media can be so powerful. A good story can overwhelm the scientific facts.”

Caulfield recognizes the double-edged nature of social media. On the one hand, he’s fond of pointing out that pop star Katy Perry has over 110 million followers on Twitter, while the World Health Organization has only 4.5 million. On the other hand, Caulfield (fast approaching 40,000 followers himself) firmly believes the scientific community needs to learn how to use social media and narrative in an engaging and persuasive way “that still reflects the reality of the science in a responsible and accurate manner.”

As Caulfield said when I interviewed him for this podcast:

“I think it’s important for those of us interested in science-based discussion to be part of the discussion. If we’re not on social media then it’s just going to be Katie Perry, Gwyneth Paltrow, and the Dr. Oz’s that get heard.”

Not an isolated case

Here’s a small sampling from dozens of recent stories we’ve published having to do with social media mishandling health care information:

• Time magazine sends out two tweets 30 minutes apart; one saying coffee helps you live longer, the other saying coffee can cause cancer.
• An ‘unconscionable’ Cleveland Clinic tweet of a misleading brain scan image suggesting cancer remission from an experimental therapy (failing to mention standard therapy was also used).
• A woman’s Facebook post offering a ‘trick’ to finding breast cancer gets > 150,000 shares/comments … but no mention of the lack of evidence supporting regular breast self-exam as beneficial.
• A well-intentioned Facebook post by a cancer patient muddles the distinction between diagnosis and screening in such a way that could potentially hurt readers.

Although you can find various definitions of what “social media” is, most experts agree it features the following: published content on a website or app that is user-generated and shareable.

It means the tweets and posts bulleted above — coming from a news magazine, a leading academic medical center, and two cancer patients —  qualify as published and shareable misinformation.

This is a good part of the reason we’re not fond of the term “fake news” here at HealthNewsReview. Does it exist? Sure it does. But what we find more problematic is health care information that is oversimplified, poorly researched, or presented in a careless or misleading way. Accuracy and balance become casualties. Social media can dramatically amplify this problem.

A study published earlier this year in Science (‘The spread of true and false information online’) found that ‘falsehood diffused significantly farther, faster, deeper and more broadly than the truth.”

The authors attributed this to a novelty effect; in other words, novelty trumps knowledge.

“Doomed to fall victim to questionable content”?

The fact that social media is, by definition, user-generated and interactive raises an important issue for Earle Holland.

“Right now much of the public sees little distinction between traditionally bona fide news outlets and politicized social media sources. What both offer are equal in their eyes,” said Holland, who was the senior science and medical communications officer at Ohio State University for almost 35 years.

“Without the public’s willingness to at least invest the time needed to vet the source of their information, they’re doomed to fall victim to questionable content.”

Facebook and Twitter — but especially bite-sized tweets — are not designed to convey the depth, nuance, and caveats of science. Rather, they’re tailor-made for allure, veneer, and rapid ingestion without the nutritional value. What’s more likely to drive likes and retweets —  evidence or emotional resonance?

And let’s not forget, the most visited social media platform is YouTube which — according to a study published by the Pew Research Center earlier this year — is used by 3 out of 4 Americans, the vast majority of whom visit the site daily.

A study published online today in the journal, European Urology found the following about YouTube videos on prostate cancer:

• Of 150 of the most viewed videos, 77% “had factual errors or biased content in either the video or its comment section.”
• Only about half sufficiently addressed potential harms and side effects.
• About 1 in 5 videos recommended unproven alternative therapies.
• Average viewership per video was roughly 45,000, with the highest viewership at 1.3 million

My unscientific litmus test of YouTube is this: search the site for “cancer, cure, food” and ask yourself how many of the nearly 50 million results are evidence-based.

Reliable, transparent, available and (drumroll) … respectful

If physicians and researchers can, indeed, be part of the solution — rather than part of the problem on social media — what do they need to do?

For insights on this I turned to Deanna Attai, MD, a UCLA breast surgeon who once told me she sees social media “as an extension of what I do in my office … getting good quality, evidence-based information out there to help combat or dilute a lot of the misinformation on the internet.” Here’s what she recommends:

• Be a reliable source yourself — if posting (or reposting) something about an article or study, make sure you’ve carefully read them.
• Call attention to headlines that are misleading, science that is flawed, and support your opinion.
• Be transparent: make it easy for people to find out more about you (link to a website or faculty page, for example, in your Twitter/Facebook bio).
• Be available: respond to questions/comments, and engage in respectful dialogue with those who may have differing viewpoints.

I figure if a surgeon with an intensely busy practice has time to do that, then I have no excuse not to follow her lead.