At Stanford Drugs X ED (half 2 of 5 of the #TourDeChaos if you happen to’re preserving rating at residence), I used to be invited by Nick Dawson to take part in an impromptu panel to recap the #CyberWoke Workshop he had facilitated the day prior (formal identify: Knowledge Privateness, Transparency and Ethics within the period of Fb, Cambridge Analytica). I’d attended Nick’s workshop, and two weeks prior, had engaged in a dialog with a doctor round Fb-powered assist teams, why they’re not “going [away] anywhere”. I summated to her it appears to me that many sufferers, particularly when weak, unwell, and looking for solutions, will do practically something to obtain the assist and validation they want. Fb has change into an enormous a part of that—and no, it’s not about to cease in mild of Cambridge Analytica.
What do sufferers need to do with the Cambridge Analytica-Fb scenario?
For many who have accomplished higher at insulating themselves from the rapid-fire of the present information cycle than I, in easy phrases, Cambridge Analytica knowledge mined and “misused” (to place it mildly) Fb knowledge of thousands and thousands to “undermine democracy”1, creating “techniques that could be used to influence voters” utilizing the social media platform.2 Cambridge Analytica violated Fb’s privateness coverage—although a lot has been mentioned in what Fb can do higher to safeguard customers’ knowledge.
It’s impractical to aim to evaluate simply what number of Fb teams exist—if you happen to’re on Fb, it’s possible that you’ve got joined a gaggle, or that you’ve got been added to a Fb group by somebody you already know. In January 2016, Mark Zuckerberg said that 1 billion Fb customers have been utilizing the Teams characteristic—on the time, Fb had 1.5 billion three
So, simply the place do sufferers are available in? Sufferers have lengthy related utilizing Fb and Fb Teams to fulfill each other, present assist, and share information. Nevertheless, with out Fb itself divulging this data by means of its personal analytics, it’s onerous to inform what number of affected person assist teams and the like might exist on the platform.
Are affected person teams shifting off Fb? Uncertain.
I informed the physician above that I, previously, had tried to maneuver an bronchial asthma group off of Fb together with the pal who had began it. We couldn’t make folks budge—and, surprisingly (or not), I believe we’d not have any higher success within the wake of Cambridge Analytica’s harvesting of data of customers. On the time, we merely needed a extra organized approach to discover data folks had contributed to the positioning. Now, no less than 5 years later, knowledge privateness has come into the dialogue, and I’m nonetheless uncertain we’d have the ability to get folks to maneuver off Fb.
Comfort. Individuals are already on Fb, so it’s simpler for them to have their assist wants met the place they already are. They worth comfort—and the massive numbers of individuals they’re able to join with without delay in sure Fb teams—over the threats to their privateness, even when they’re divulging doubtlessly delicate medical data on-line, typically within the “secrecy” of closed communities.It’s going to be onerous, I consider, to get affected person communities to maneuver off of Fb because of this, as I skilled and as mates of mine in several communities have additionally.
Being #CyberWoke
Okay critically, I’m most likely the final millennial to determine what “woke” or “being woke” means—which is, being conscious of what’s going on: in the neighborhood, in regard to social and racial justice, and pondering for oneself.four On this context, being “cyber woke” transfers into the web world—being conscious of the tradition and neighborhood of the web world (and the way that pertains to the offline world).
How will we keep protected on-line, in a world the place hacks and different hijinks appear to be round each nook? Within the workshop, we mentioned issues like utilizing a password supervisor (one thing I’ve used for the final six months or so, and truthfully, it additionally saves me a lot time). We mentioned being cautious what data you reveal on-line, and the place/who you share it with. Fred Trotter introduced in Nick’s session on being CyberWoke through video: right here is a superb submit he wrote on ”The best way to be Cyber Woke for Sufferers”
A self-assessment of Cyber Woke-ness.
I’ve been running a blog for the reason that days of LiveJournal (is that also a factor?), and I’ve been on Fb since proper after they opened it as much as non-university college students, AKA the remainder of us with out institutional e-mails (my cousin’s then-boyfriend, now-husband invited me—I probably needed to lie about my age?). I’m an “oversharer” on the web, however critically, I didn’t even use my final identify on-line till two years in the past (and that was when purchasers began utilizing it). Nick famous this on stage on the #CyberWoke panel. For my fellow panelist, Leilani, she by no means shares her blood kind online5—one thing I’ve accomplished with little thought to since 2013. It’s about understanding the best way to set boundaries for what you share, and the way safe you might be on-line.
Nick had us introduce ourselves utilizing superpowers on the workshop. Mine? “Hi, I’m Kerri, and I overshare on the Internet.”
However I’m additionally cautious about it—you are able to do each. Perhaps I wasn’t riled up about Cambridge Analytica as a result of I simply assume this type of stuff is occurring just like the cynic I’m. In spite of everything, Fb and Google and Twitter and sure, even LiveJournal (it nonetheless exists, by the way in which), are companies—and companies want cash to outlive. I assume, no less than since that first Snapchat hack in 2013 no one appears to recollect, that my social media knowledge could also be hacked or offered or in any other case divulged.
For me, finally, it’s additionally understanding something I talk on-line is there endlessly. FOREVER. Critically, I as soon as did a presentation at a convention on social media in business actual property—don’t ask—however there was a whole slide devoted to reminding the folks within the trade, the bulk of their 40s and 50s that ANYTHING YOU PUT ON THE INTERNET is probably going on the market in a roundabout way, form, or type, FOREVER.FOR. EVER.
That goes for my (your) work, my (your) enjoyable, my (your) ramblings, and sure, my (your) well being data if I (you) select to place it on the market.
As a affected person, it’s about selecting fastidiously the knowledge that goes into the everlasting archive of the Web endlessly, how safe you might be with passwords (together with to social media and on-line well being portals!), and the place you place that data—and sure, perhaps truly studying these end-user license agreements each firm is aware of we don’t learn.
As a affected person, how do you join with others whereas staying protected on-line? What boundaries have you ever drawn your self? Tell us within the feedback.


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