Power to the Patient!
I haven’t been blogging nearly as much as I did five years ago, largely because my early blogging was all about trying to figure out “what the heck is up with the American healthcare system???” and it’s now been two years since I had any new realizations. Here’s a summary of that, then some quick hits on recent and upcoming events.
No, wait – this part turned out long, so I’ll continue tomorrow with the “quick hits.” For today, here’s the baseline I reached two years ago.
[Read more…]Updates May 8:
I’ve often blogged and spoken about the many parallels between the women’s movement and the patient empowerment movement. Here’s one perfect quote from Miriam Hawley, one of the founders of the Boston Women’s Health Book Collective, whom I met last year:
[Read more…]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:
[Read more…]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.
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.
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.
A quick update on two aspects of my speaking business:
Recent speeches have been to audiences of software developers in Amsterdam, innovators (Exponential Medicine, San Diego), and a medication security company customer event then their internal company meeting (TraceLink, Chicago and Boston), and though the audiences were very different, each got very strong response, because every speech is carefully tailored to the sponsor’s needs.
My topics have expanded beyond the traditional “Dave’s cancer story” and “about e-patients.” In addition to custom requests, topics now include
[Read more…]