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The Good, the Bad and the Ugly Side of Facebook’s Health Information

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Photo by Joshua Hoehne on Unsplash

When you feel something is off in your body, you might automatically turn to Google to figure out what the hell is going on. Are you sick? Are you having side effects? Should you call your primary care doctor?

The answers to these questions––and more––are often available with just a few clicks online. In fact, millions of people receive healthcare services online via telehealth every day. And others are even connecting with their healthcare providers through social media.

While there’s a lot of good information and general wellness that can come from digital connection, the Internet also upholds significant public health challenges. And Facebook, the world's largest social media platform, is where a lot of health information--including misinformation--is passed around.

In a time when the world is still facing a global pandemic and people are more isolated than ever, is Facebook helpful or hurtful to women’s health?

Misinformation mayhem

On one hand, it’s clear that misinformation on Facebook about the Covid-19 pandemic has been hurtful to public health, particularly when it comes to mask wearing and vaccination.

The anti-vaccination movement, or anti-vaxx, is not new––it’s actually been brewing for several years. Private Facebook groups with individuals waxing and waning about false dangers of vaccines have convinced many parents and other caregivers that they don’t need to vaccinate their children against deadly diseases. Some Facebook groups encourage parents to try alternative treatments that have no effect. A huge downturn in vaccination rates in some regions has actually led to a resurgence of once eradicated diseases, such as the measles outbreak among children in Washington state in 2019.

With the Covid-19 vaccines, Facebook groups again contributed to misinformation and falsehoods about safety and efficacy. One falsehood peddled across social media and shared millions of time was that the vaccines caused reproductive issues, even if a woman was simply standing next to a vaccinated person. This claim was, of course, a big, fat lie. Unfortunately, big tech companies, including Facebook, have failed to crack down on the spread of misinformation in a major way, despite numerous promises.

Together, across Facebook, YouTube, Instagram, and Twitter, anti-vaxx activists “reach more than 59 million followers, being drip-fed disinformation daily,” according to a report from the Center for Countering Digital Hate (CCDH), a not-for-profit NGO that seeks to disrupt the architecture of online hate and misinformation. Worse, 65% of all misinformation on Covid-19 vaccines came from just 12 influential people online, which CCDH dubbed the “Disinformation Dozen.” Among these characters is Robert F. Kennedy, Jr., a famous anti-vaxxer, environmental lawyer and member of the Kennedy family.

“Despite numerous policy violations by these individuals, Facebook and Twitter have yet to take action against the majority of the Disinformation Dozen,” the report read.

And there’s a reason Facebook is so good at spreading misinformation: it’s designed that way.

“Disinformation is really successful on social media platforms like Facebook because it is often designed to be shocking, graphic and engaging,” Imran Ahmed, CEO of CCDH, told The Whipp. “Our own research has shown that Instagram's algorithm, which is designed to increase engagement and advertisement revenues, directed followers of wellness influencers to Covid and vaccine misinformation for just these reasons.”

Healing tool

On the flip side, Facebook also offers a place for people to connect about their health status. For those who feel isolated or even confused by their health diagnosis, connecting with others online who are going through the same experience can be a huge relief.

One example of the powerful side of Facebook is a group of women who have connected over being diagnosed with breast cancer. Marianne Sarcich, a breast cancer survivor and advocate who founded a Facebook breast cancer peer support group in January 2018, says that connecting with other survivors and patients is an aid for emotional healing. Emotional support is a huge care gap that can be partially filled online through community, she said.

“A breast cancer diagnosis can be so isolating, so those connections are like gold,” Sarcich told The Whipp. “And those connections let the person know that they are not alone in their response to whatever their breast cancer experience is. Thinking that you are the only one feeling a certain way is fairly typical. When the reality is, they probably are one of many. I consider my breast cancer group my tribe and my family.”

Sarcich, who works part-time teaching school children about life in the 1800s at a Delaware museum, says that Facebook groups can actually be mines of information for rare cancers. Her group, In This Together Philly/Wilmington, includes more than 900 regional members who connect about their breast cancer experience and help each other.

However, Sarcich also has run into misinformation about alternative treatments online that have no effect.

“Unfortunately too many people decide to follow the advice from a post in the group and replace their FDA approved treatments with one of these alternative treatments,” Sarcich told The Whipp. “The stakes are so high. And as you can imagine, this doesn't end well. It's so understandable why they make their choice. Some people just want that hope and they were willing to do anything.”

While Facebook holds many untruths on health information, it’s also a place of solace for people dealing with a health status to connect––and even find some truth through the experience of others. Whether that’s learning from others how to become your own health advocate, getting referred to an expert through a Facebook friend or just having someone to talk to about a diagnosis, Facebook groups are filling a care gap in a positive way.

Despite the impact of connection, the danger of Facebook’s ability to spread misinformation like wildfire is still rampant. And it remains to be seen whether Facebook has the gall to actually crack down on health information. The social media giant has added some measures over time in an attempt to flag sketchy sources of information, but the actions don’t go far enough if misinformation is still available on the platform.

“The most obvious consequence of platforms failing to remove misinformation when it is reported to them is that it continues to circulate and gain traction, making it even harder to address at a later point,” Ahmed told The Whipp. “But it also has a second and more insidious impact: research has shown that labels can fool users into thinking that unlabelled content has been checked and left up, so it's reliable. So failing to act on misinformation when it's reported not only leaves it free to circulate further, it can actually create a false impression that it is true.”

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