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Fake News in Healthcare Can Be Quite Dangerous in Facebook’s Health Communities

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

 

Fake news in healthcare

“Sometimes fake news can seem innocent, or like a reasonable question,” said Tory Aquino, whose daughter’s rare form of arthritis inspired her to create a now 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.”

WEGO Health, a network of consumers like Aquino who are health advocates, influencers and experts, includes over 100,000 members. Most participate in five to six different online health communities almost every day, but they say their roles have changed dramatically as the popularity of Facebook health conversations has exploded.

Our Patient Leader members help people take control of their illness 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.

While its existence has definitely been highlighted in recent months, “fake news” is not a new phenomenon; you can find evidence of it as far back as the invention of the printing press.

However, with the number of online webpages and therefore sources rapidly increasing every day, it is no longer as easy as disregarding the story on the front page of The National Enquirer or the homepage of The Onion.

Add into the equation the number of people sharing and then cross-sharing the fake news in healthcare, either unchecked or blatantly falsified information, and it becomes increasingly difficult to pinpoint a source—and let’s be honest, most of us aren’t going to take the time.

 

Facebook is the most popular channel used

Keeping fake news in healthcare off Facebook is critical because it has become the preferred platform for consumer health conversations. In our recent Behavioral Intent Study, we surveyed 433 online health community members across seven health conditions, and found that Facebook ranked above all other online channels when it came to sharing health information:

  • 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“Facebook is the number one channel for our community, absolutely,” said Patient Leader Jackie Zimmerman, who founded the non-profit Girls With Guts “to empower girls and women with Inflammatory Bowel Disease (Crohn’s Disease & ulcerative colitis) and/or ostomies to share their stories of confidence and to promote self-esteem.”

Girls With Guts has 15,000 Facebook followers, but Zimmerman chooses a smaller, private Facebook group for discussions where participants are vetted before they are allowed to join, so she and fellow administrators can keep a careful eye out for fake news.

“There’s no shortage of ‘don’t listen to doctors, cure yourself with XYZ supplements instead,’” said Zimmerman, who is also Patient Leader Network Manager at WEGO Health. “Often it’s a one-on-one effort 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. It’s a daunting process.”

 

Counterattack: running information interference

Spotting fake news in healthcare becomes even more difficult in the context of 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 milkshake to hide the horrible taste”) to life-threatening.

Ronny Allan, a Neuroendocrine cancer patient community leader, has written extensively about fake cures and cancer for his 4,500 Facebook followers. He notes there are several key ways to sleuth out the false prophets.

Allan stated, “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.”

Other Patient Leaders have offered WEGO Health some insights into moderating fake news in healthcare with objectivity while encouraging open dialogue:

  1. 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
  2. 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, rarely banning members outright.
  3. 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.

While researchers continue to work on an be-all, end-all solution to the misinformation on social media, and continue to fall short, the silver lining comes from these Patient Leaders who, no matter which disease or health topic they discuss, agree that standing idly by is not an option.

“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,” added Zimmerman.

 

Back to you

What fake news have you seen as potentially threatening to online patient communities? How much time does your organization spend cleaning up and safeguarding against the sharing of misinformation?

Leave us a comment below.


WEGO Health was created by Jack Barrette, a former Yahoo! executive focused on lifestyles, health and medicine. At Yahoo!, and throughout his career in healthcare, Jack has seen millions of people struggle to find credible, useful health information online. WEGO Health was born as a result of these experiences. Jack lives in Boston with his beloved wife and terriers. He believes fervently in giving back to the community through his non-profit work, and also in the health benefits of good wine.


  • Sue

    I can see this from two points of view. Firstly I absolutely agree that “fake news” needs to be addressed and there should be consequences for scammers who prey on the vulnerable, making claims that can cause more suffering and anxiety. I have seen something recently, a few times on my news feed, which is advertising to people who have IBDs and have been misdiagnosed initially – it offers help to sue the NHS! I don’t think I need to comment further on that.

    However, I also have a problem with Facebook. I make a product which is often used by people with bowel conditions – it isn’t a medicine and it won’t make them better – it is a product that helps with toilet odours. We are also running a year long campaign on Facebook to raise awareness of a variety of different conditions affecting the bowel, including some that are little known and to raise awareness of using disabled toilets by people with no visible disabilities. Each post has been written by volunteers with the condition but just recently FB has taken all of the interests away relating to the market that my products help. So the campaign which had an audience of 240,000 is now 2million! Again, no comment necessary!

    The removal of specific interests relating to bowel conditions in my case means that I can no longer reach my audience directly via FB which will have catastrophic consequences for my small, self-funded company which makes a brilliant product but can’t now reach out to those who will benefit from it.

    So I think that whilst I agree totally with everything that you have said, if this is the reason why FB have suddenly removed the ability to target specific areas within the health sector, they need to re-think and find a happy medium. Ads on FB have to be reviewed before being run anyway and groups tend to have admins to remove posts when necessary. Sometimes we have people putting scamming posts in the remarks fields on our ads and posts which I remove. I run a closed group for my customers too and haven’t had a problem with scammers on there because it is closed and only customers are permitted to join.

    I’m pleased I read your post, now I appreciate why FB probably removed all of my customer “interests”. Thank you for the information.

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