As Facebook hires 3,000 more foot soldiers to fight fake news, they join a battle against dangerously bad online health information that’s been raging for years. At the front lines, they’ll find reinforcements: volunteer consumer watchdogs who consider it their mission to protect the chronically ill or the newly diagnosed from bogus claims and misinformation that could harm—or even kill.

Ronny Allan, a neuroendocrine cancer patient community leader, has written extensively about fake cures and cancer for his 4,500 Facebook followers. Fueled by the desire to drown out cancer quackery, Allan recently published a three-part blog series that takes aim at these unregulated “miracle cures,” and shared some helpful advice on how to separate fact from fiction:

“I was delighted to see that the U.S. Food and Drug Administration (FDA) recently posted warning letters addressed to 14 U.S.-based companies illegally selling more than 65 products that fraudulently claim to prevent, diagnose, treat or cure cancer. The products are marketed and sold without FDA approval, most commonly on websites and social media platforms.

Most of these claims are from obscure unheard of websites (clue 1) and yet they claim to have the cure for all sorts of illness including cancer (clue 2). They normally have a product to sell (clue 3). Clue 4 and onwards can be found by digging into their claims to see if there is any scientific evidence – normally there’s none.”

“Sometimes fake news can seem innocent, or like a reasonable question,” says Tory Aquino, whose daughter’s battle with a rare form of arthritis inspired her 4,000-member Facebook group Mariah’s Movers. “But there are questions that are intentionally misleading my community, like ‘has anyone else’s kid experienced seizures with this drug?’ I know it’s fake, and I share medical research to counter it—because a parent might stop a critical medication.”

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Spotting fake news isn’t always easy in Facebook groups that embrace open conversation about alternative medicine, success stories and individual experiences.

Allan and Aquino are part of an active community of health advocates, influencers and experts. Most participate in five to six different online health communities almost every day. These patient leaders say their roles have changed dramatically as Facebook health conversations have exploded in popularity.

Patient leaders are helping people take control of their illnesses by starting and managing online groups. Now those groups are booming, but with that success comes the spammers, scammers and phony cures. Patient leaders spend a lot of time pushing back that tide, guiding their followers to reliable information—and to their doctors.

Facebook is Number One

Keeping fake health news off Facebook is critical because it has become the preferred platform for consumer health conversations. In a recent survey conducted by WEGO Health, more than 430 online health community members ranked their chosen platform, with Facebook taking the top spot above all others:

  • 87% share health information through public Facebook posts
  • 81% share health information through private Facebook messages
  • 59% share health information on other social platforms, such as Instagram
  • 42% share health information through Twitter

For patient leader Jackie Zimmerman, who founded the non-profit Girls With Guts, Facebook is the unequivocal leader for her community, comprised of girls and women with Inflammatory Bowel Disease (Crohn’s Disease & ulcerative colitis) and/or ostomies. Girls With Guts has 15,000 Facebook followers, but Zimmerman chose a smaller, private Facebook group for discussions; group participants are vetted before they are allowed to join, so she and fellow administrators can keep a careful eye out for fake news.

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Still, Zimmerman stresses there’s no shortage of ‘don’t listen to doctors; cure yourself with XYZ supplements instead.’ She says it often takes one-on-one effort by patient leaders to get into posts and to try to inform people on why the information is incorrect and how you can prove that it is incorrect. Needless to say, it can be a daunting process.

Correcting the record

Spotting fake news isn’t always easy in Facebook groups that embrace open conversation about alternative medicine, success stories and individual experiences. Tips and tricks abound, from innocuous (“take that medication with a milk shake to hide the horrible taste”) to life-threatening. Patient leaders offered some insight into moderating with objectivity while encouraging open dialogue:

  • Do the research, share the research: nothing shuts down fake news like hard facts, and patient leaders rely on credible medical journals and expert quotes—not their own opinions.
  • Post the rules, enforce the rules (nicely): clear rules of engagement should be visible on every group, and “sorry, your post is a violation of our rules” enforcement feels much less personal. Patient leaders also invite members to correct their post, and only rarely ban members outright.
  • Partner with your physician: responsible patient communities have remarkably detailed discussions of medical specifics—but always stop short of medical advice. Leaders consistently reinforce the golden rule of patient conversation: “ask your doctor.”

Along with their own vigilance, patient leaders are starting to see help from the Food & Drug Administration. The FDA recently cracked down on 14 companies for selling more than 65 phony cancer cures, using social media and Facebook.

No matter which disease or health topic they discussed, patient leaders agree that sitting idly by is not an option.

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“We are committed to helping our communities live the healthiest, happiest lives possible, even if it’s in the last months of their lives. No one is going to lie to my group members, or sell them snake oil, on my watch,” adds Zimmerman.

Jack Barrette, CEO of WEGO Health

 

 

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