e-Patient Dave

Power to the Patient!

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For patient groups, leaving Facebook isn’t easy: the connections can be valuable

Graphic adapted from TNW (TheNextWeb)

My post January 7 about why I stopped participation on Facebook has drawn lots of discussion, which is great. In this era, it’s increasingly important for us all to THINK about the information that floats past our eyeballs: “Wait – who put this here??  Do I trust it?? What if it’s wrong??” 

It’s true for the news feeds that we watch (online or off), as well as everything we see on Facebook and everywhere else on social media. The hard truth is that sometimes what “broadcasters” show us (and make no mistake, Facebook is both a broadcaster and an editor, because it modifies what it shows you based on your past likes) is NOT a random feed of stuff that happened, but something chosen to keep YOUR eyeballs glued to YOUR screen. 

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Events and travels, winter 2019

It’s been a busy winter. Amid all the Facebook scandals and new government regulation work that’s going on, I thought I’d send an update on travels. Here are some visuals from a recent 17 day, six country, seven speech trip. (Fun facts: nine different hotels, and doing laundry in a Vienna laundromat that only takes instructions from a smartphone app.)

The background image is the HIMSS19 (health IT systems conference) logo repeated over and over and over and over, because that brutal exhausting conference is like that :-), and is the background of everything else.

Counterclockwise from left:

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“Filter Bubbles” TED Talk from 2011: understanding what some sites show you (and don’t show others!)

I’ve been writing about Facebook recently. There’s lots more disturbing news about them, but it turns out some of the deeper issues are broader than one company. This is one that’s worth knowing, as we start to understand the values – and risks – of online patient communities.

During the increasingly contentious run-up to the 2016 election, several of us noticed (I know because they/you mentioned it on FB) that something had changed – the world seemed to be getting crazier, with people at both ends of the political spectrum unable to comprehend how the OTHER end could be so stupid, so ignorant, of what was blindingly apparent to them. 

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“Superpatients”: free webinar for medical librarians [February 2019]

Update: here’s the archive recording of the webinar.

Original post:

Tomorrow (Thursday Feb 21) at 2pm ET, for the second time I’ll be presenting the concept for my new book, Superpatients: Patients who extend science when all other options are gone. The first time was December, in a private webinar for the QI [quality improvement] Connect team in Scotland. Registration is open to the public here but that’s optional – at bottom I’ll paste in how you can join it at showtime, without registration. In any case it’s free and no obligation.

Click to register – see details below
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More about Facebook’s privacy and security

This is a quick update on the status of Facebook’s issues. I could have written several such posts as the weeks have gone by since I posted that I quit FB on January 7, but this will do. 

I’m bothered that this isn’t in the news more about healthcare, but it is in the news for high tech and investors, especially since the Feb. 5 publication of the new book Zucked, by Roger McNamee, who was an early advisor to the company and continues to be a big fan. It might sound like a tell-all scandal book (and “catastrophe” in the subtitle is certainly scandally) but I’m listening to it on audio and the book itself is not, at least so far. The guy believes that Zuck (whom he personally coached) and COO Sheryl Sandberg (whom he recruited to join FB long ago) have just gone too far in their belief that they’re not responsible for what anyone does with their software.

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Listen while hilarious Mighty Casey lays out my “why I ditched FB” in 18 tense minutes.

Last month I suspended my Facebook activity and posted “Facebook, I’m out. Your irresponsibility with patient groups has gone too far.”  It’s been hard because 87 times a day I think “I gotta pop this on FB” or “I wonder what my daughter’s up to” or some such.  But I am pissed, pardon my French, because these guys (including Sheryl Sandberg etc) are being totally irresponsible, and yet Zuck continues to wear his innocent face. 

[image credit: kc green | Gunshow Comic]

They’re lying. Even as the evidence keeps coming out week after week, they keep putting on sanctimonious “We want to bring the world together” crap. And if you saw the FB movie The Social Network, which Zuck himself approved, you know it actually started (despite recent testimony and statements to investors) to rate chicks.  Period.  And then they got billionaire fever, which didn’t help improve those frat-boy ethics one bit.

They’re lying.  They’re abusing trust, have been doing it for years, even giving snoopy companies tools to do it with and only apologizing when they get caught.  

ANYWAY, one of my most outspoken friends in healthcare is Mighty Casey (web, Twitter), a cancer survivor herself who also gained many years of bitter experience dealing with the healthcare system as primary caregiver for each of her parents in their final years.

And yet – because she’s also an occasional standup comic – she has still maintained her sense of humor through all this (peppered with appropriate outrage). 

Having also been a network news production nerd for decades (I know, right??? All this in one person??) she’s also kept an amazing list of all the cuss-worthy @#^kery FB’s been in the news for in the past year.  And having started a podcast called Healthcare is HILARIOUS! because she has nothing better to do, she just did a bang-up job of summing all this up. 

Most of her episodes have multiple segments including a review of the week’s health news, but this one’s just this whole Facebook privacy violation and secrecy mess in 18 minutes.  Please listen, and encourage friends to.  

Remember: this all started hitting the news because of the Cambridge Analytica uproar, in which FB was just plain careless and negligent about what might happen if their marketing-helper technology got misused. And around the same time we started discovering they were helping marketers (secretly!) dig out the names of people in private (“closed”) patient groups.

It’s scummery, and lord only knows what those people have already done with that data. Resist.