For Health Communities, Facebook is Too Important to Delete

No one is happy about Facebook’s failure to protect our data, including its CEO, Mark Zuckerberg, who issued a mea culpa in newspaper ads over the weekend. “This was a breach of trust and I’m sorry we didn’t do more at the time,” Zuckerberg said. “We have a responsibility to protect your information. If we can’t, we don’t deserve it.”

Some people aren’t waiting for Facebook to get this right. Frustration over this latest breach of trust has given rise to the #DeleteFacebook movement. But for the millions of people who use Facebook to share health-related knowledge and support, deleting Facebook is not that simple. Nor should it be.

Facebook’s global audience (2.2 billion and still growing) enables communities of patients and caregivers to connect with one another on important health issues. The majority of people in these communities – from those interested in everything from diet and nutrition to rare disease – would not have found each other if not for Facebook.

Which is why deleting Facebook isn’t just impractical, it’s undesirable. It’s not like trading Uber for Lyft and getting the same driver. When it comes to connecting with trusted friends and family, Facebook has no rival.

So, it’s up to WEGO Health and its 100,000+ patient leaders to educate health consumers about Facebook privacy – and to help its users see past the current media frenzy. There are concrete steps users can take today to protect their privacy, while continuing to benefit from the connectedness Facebook offers.


A “utility” for patient communities

Ronny Allan, a top cancer patient leader, says, “It wasn’t until I set up Facebook as a front end to my blogging activity that I was able to make a huge impact. Within twelve months, I doubled my following and blog hits and it’s had an exponential effect on my ability to spread awareness of neuroendocrine cancer and offer help and support to patients worldwide.”

As is the case with many WEGO Health patient leaders, Facebook drives fifty percent of Ronny’s blog traffic, which is more than a half-million visitors to date. “To use my Facebook pages and my Facebook closed group, I need my personal account,” Ronny says. “I take security very seriously, so I lock it down as much as possible. It’s worth the effort.”

Kathy Reagan Young, an award-winning Multiple Sclerosis patient leader, points out that with all social media, we have to be smart. “Everyone should understand that whatever they put on Facebook – or any other digital space – can be shared far and wide.” Kathy says.  “We have to be selective in who we ‘let in’ – we have to be discerning in what we believe and do our own fact-checking. Given those parameters, which frankly should have always been in place for us all, Facebook is still a great communications tool for business and personal communications. I’m definitely staying!”

Facebook is a social media platform, but for patient communities it is more than that: It’s the stage on which we connect, share, and learn from each other.

In fact, Facebook is now so indispensable to health consumers, it’s not unlike a utility – as essential to daily living as electricity and running water. For health consumers, these social connections are a lifeline that reduce isolation, they are a source of trusted insights, and even a way to advance research.

Like other utilities, Facebook now seems sure to attract new regulations that will, in time, offer greater peace of mind. But in the meantime, Facebook is a business, with a responsibility not just to its users, but its shareholders. Regulations will be hard-won and long term, balancing the free-market innovation that drove its creation with the accountability that comes with being a public utility.

One thing is for certain. Facebook will change but it will not go away.


How can health community members protect their data?

Perhaps inspired by a $75 billion drop in its market value – Facebook is taking measures right away. The primary focus is on apps, the third-party gizmos that sit on top of Facebook. It was a quiz app from Cambridge University that caused this recent data loss. More than 270,000 users took the quiz and inadvertently allowed access to 50 million more through their Facebook connections.  (That data was sold to the now-infamous Cambridge Analytica.)

Facebook has publicly stated that it will make it much easier, and more obvious, to shut off data-sharing through apps. The company promises to let users know if their personal data was compromised.

But, WEGO Health strongly advises a more proactive approach. Every user should update Facebook privacy settings now and modify their behavior on the platform going forward.

While these steps may get simpler, here are a few good articles with step-by-step instructions:

Newsweek, Facebook Data: How to Protect Your Private Information

Trusted Reviews, Facebook Privacy Settings: 18 changes you should make right away

Mashable, How to See All the Weird Apps That Can See Your Data on Facebook

WEGO Health will update this post, and these links, as this situation evolves.


“Let’s educate, not vacate.”

Recognized Multiple Myeloma patient leader Cynthia Palmieri Chmielewski sums up the consensus among her peers who lead Facebook groups, write blogs, collaborate with non-profits and industry, and together influence tens of millions of patients:  “Facebook has allowed me to reach thousands of patients and care partners from around the world within my cancer community. For some followers, this is their only connection with others that share their diagnosis. I am fortunate to be able to attend international conferences where the latest research is being presented. Sometimes the news is practice changing. Through my online communities, I am able to disperse this information in real time. If you educate one advocate, you reach thousands of patients. It is our job as advocates to educate ourselves and our communities about privacy issues on Facebook. Facebook and other Social Media platforms are too valuable to the online patient communities to abandon. Let’s educate not vacate.”

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