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:
- 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, rarely banning 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.
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.