Toward a New Science of Patient Engagement
Fifty years ago today, at Emmanuel College in Boston, a group of uppity women got together to talk about what was important to them about their health. Tomorrow night (Friday, May 10) some of them will gather again, with people from Suffolk University, which is taking over as Our Bodies Ourselves Today. (See that post.)
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In our previous episode I mentioned that “ornery” is a form of the word “ordinary,” and said “It’s the ‘ornery’ people who suffer when the system doesn’t achieve its potential. I stand with them.”
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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…]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.
[Read more…]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.
It ticks me off that the excellent site HealthNewsReview.org is going out of business due to lack of funding. More on that below. This independent website has for 12+ years been teaching us all how to watch out for BS in health news stories; they’re so important for informed health consumers that over on the e-patient blog I’ve written about them a dozen times.