Data Privacy and the Online Community: Being #CyberWoke

At Stanford Medicine X ED (part 2 of 5 of the #TourDeChaos if you’re keeping score at home), I was invited by Nick Dawson to participate in an impromptu panel to recap the #CyberWoke Workshop he had facilitated the day prior (formal name: Data Privacy, Transparency and Ethics in the era of Facebook, Cambridge Analytica). I’d attended Nick’s workshop, and two weeks prior, had engaged in a conversation with a physician around Facebook-powered support groups, why they’re not “going [away] anywhere”. I summated to her it seems to me that many patients, especially when vulnerable, unwell, and seeking answers, will do nearly anything to receive the support and validation they need. Facebook has become a big part of that—and no, it’s not about to stop in light of Cambridge Analytica.

What do patients have to do with the Cambridge Analytica-Facebook situation?

For those who have done better at insulating themselves from the rapid-fire of the current news cycle than I, in simple terms, Cambridge Analytica data mined and “misused” (to put it mildly) Facebook data of millions to “undermine democracy”1, developing “techniques that could be used to influence voters” using the social media platform.2 Cambridge Analytica violated Facebook’s privacy policy—though much has been discussed in what Facebook can do better to safeguard users’ data.

It’s impractical to attempt to assess just how many Facebook groups exist—if you’re on Facebook, it’s probable that you have joined a group, or that you have been added to a Facebook group by someone you know. In January 2016, Mark Zuckerberg stated that 1 billion Facebook users were using the Groups feature—at the time, Facebook had 1.5 billion 3

So, just where do patients come in? Patients have long connected using Facebook and Facebook Groups to meet one another, provide support, and share knowledge. However, without Facebook itself divulging this information through its own analytics, it’s hard to tell how many patient support groups and the like may exist on the platform.

Are patient groups moving off Facebook? Doubtful.

I told the doctor above that I, in the past, had tried to move an asthma group off of Facebook along with the friend who had started it. We couldn’t make people budge—and, surprisingly (or not), I think we’d not have any better success in the wake of Cambridge Analytica’s harvesting of information of users. At the time, we simply wanted a more organized way to find information people had contributed to the site. Now, at least five years later, data privacy has come into the discussion, and I am still doubtful we’d be able to get people to move off Facebook.

Why?

Convenience. People are already on Facebook, so it’s easier for them to have their support needs met where they already are. They value convenience—and the large numbers of people they are able to connect with at once in certain Facebook groups—over the threats to their privacy, even when they are divulging potentially sensitive medical information online, often in the “secrecy” of closed communities.
It’s going to be hard, I believe, to get patient communities to move off of Facebook for this reason, as I experienced and as friends of mine in different communities have also.

Being #CyberWoke

Okay seriously, I’m probably the last millennial to figure out what “woke” or “being woke” means—which is, being aware of what is going on: in the community, in regard to social and racial justice, and thinking for oneself.4 In this context, being “cyber woke” transfers into the online world—being aware of the culture and community of the online world (and how that relates to the offline world).

How do we stay safe online, in a world where hacks and other hijinks seem to be around every corner? In the workshop, we discussed things like using a password manager (something I’ve used for the last six months or so, and honestly, it also saves me so much time). We discussed being careful what information you divulge online, and where/who you share it with. Fred Trotter presented in Nick’s session on being CyberWoke via video: here is a great post he wrote on ”How to be Cyber Woke for Patients”

A self-assessment of Cyber Woke-ness.

I’ve been blogging since the days of LiveJournal (is that still a thing?), and I’ve been on Facebook since right after they opened it up to non-university students, AKA the rest of us without institutional e-mails (my cousin’s then-boyfriend, now-husband invited me—I possibly had to lie about my age?). I’m an “oversharer” on the internet, but seriously, I didn’t even use my last name online until two years ago (and that was when clients started using it). Nick noted this on stage at the #CyberWoke panel. For my fellow panelist, Leilani, she never shares her blood type online5—something I’ve done with little thought to since 2013. It’s about knowing how to set boundaries for what you share, and how secure you are online.

Nick had us introduce ourselves using superpowers at the workshop. Mine? “Hi, I’m Kerri, and I overshare on the Internet.”

But I’m also careful about it—you can do both. Maybe I wasn’t riled up about Cambridge Analytica because I just assume this kind of stuff is happening like the cynic I am. After all, Facebook and Google and Twitter and yes, even LiveJournal (it still exists, by the way), are businesses—and businesses need money to survive. I assume, at least since that first Snapchat hack in 2013 nobody seems to remember, that my social media data may be hacked or sold or otherwise divulged.

For me, ultimately, it’s also knowing anything I communicate online is there forever. FOREVER. Seriously, I once did a presentation at a conference on social media in commercial real estate—don’t ask—but there was an entire slide dedicated to reminding the people in the industry, the majority in their 40s and 50s that ANYTHING YOU PUT ON THE INTERNET is likely out there in some way, shape, or form, FOREVER.
FOR. EVER.

That goes for my (your) work, my (your) fun, my (your) ramblings, and yes, my (your) health information if I (you) choose to put it out there.

As a patient, it’s about choosing carefully the information that goes into the permanent archive of the Internet forever, how secure you are with passwords (including to social media and online health portals!), and where you put that information—and yes, maybe actually reading those end-user license agreements every company knows we don’t read.

As a patient, how do you connect with others while staying safe online? What boundaries have you drawn yourself? Let us know in the comments.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Asthma.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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