Fierce ghost in the machine
Chief Message Officer. Content maven. E-patient. Speaker. Rabble-rouser. Redhead. Author of "Cancer for Christmas: Making the Most of a Daunting Gift". #occupyhealthcare #s4pm
@GriffRae Write on a schedule, even if it's only once a week. Keep a journal (digital or pen/paper) to keep your tools and your voice sharp. Read "Writing Down the Bones" by Natalie Goldberg (http://nataliegoldberg.com/books/writing-down-the-bones/).
4 days, 13 hours ago on My So-Called Career: A Guest Post
@GriffRae I'm a writer - LOVE reading great stuff =)
4 days, 17 hours ago on My So-Called Career: A Guest Post
OM-fucking-G, baby. You are most certainly the sharpest, and smartest, tool in the drawer. ANY drawer. Add "transcendental fuckery," and you've won the internet for the decade, at least ...
4 days, 18 hours ago on My So-Called Career: A Guest Post
There IS a hashtag - #gmdd - that I, and all my movement buddies (including the three mentioned above, @epatientdave @reginaholliday and @hugooc) have been using for at least a few years now. It's time for all the developers and policy wonks who are NOT part of/partnered with actual, real-live patients to either sit down and shut up, or start actually letting patients help design and deploy the tech that's supposed to "help" us.
Given that I know, from my role as a hospital-med journo, how little actual-end-user input was asked for in EHR development - until, of course, workflows were ground to a halt during implementation - I'm not holding my breath on the speed-of-adoption on the industry's part of that "let patients help" thing. But they can't say no one brought up the idea. Patient activists have been BEGGING for YEARS to get the industry to recognize that the people served by the healthcare system (the ones commonly called "patients") aren't meat puppets, or stupid children. Many of us have industry expertise, know exactly where the gaps in the system are, and have solid ideas on how to fix them.
But we're up against a $3T/year gold rush mentality. What industry is willing to transform itself away from any slice of a pie that size ... ?
1 week, 3 days ago on Mostashari wants ‘day of action’ for widespread patient access to records
“'What’s really exciting about the last few days is the dialog that’s ensued,' DeSalvo said." Boy howdy.
I know that the underpinnings here are more about political pressure (thank you, K Street, you rat finks), and that the blowback that rose from the people/patient ranks in the wake of last Friday afternoon's "proposed rule change" whispered announcement has put the big players on notice that *we noticed*.
And I think "Data Independence Day" has the potential to be seismic.
1 week, 4 days ago on DeSalvo reiterates ONC’s commitment to health consumer empowerment
Given that CMS has reduced from 5% to 1 - as in, 1 patient, not 1 percent - the requirement for portal usage by patients to fulfill MU3 criteria, I'm afraid the whole effort to make health information "meaningfully useful" to patients is now buried on Boot Hill. So much for patient engagement - there won't be any required. We'll be locked out, and meat-puppetized ... AGAIN.
1 week, 6 days ago on HHS proposes 90-day MU attestation period, easier patient engagement
You've clarified something I've been thinking for a long time - that being a little bit of a dick is *exactly* the value I bring to pretty much every professional encounter I have. The kid down front who announced, at full volume, that the emperor was buck naked was certainly a bit of a dick, without fully understanding that he was. And since the poor child was undoubtedly hauled off for a session on the rack, if not full on beheading, after said announcement, the timid "be nice to everyone, always, even if it KILLS. YOU." roll can be understood. If not forgiven.
'Cause truth might hurt, but lying in the guise of kindness in exchange for money is venality at its most ... venal.
2 months ago on Hard Truths: A Little Bit of a Dick
We are all breakable. And life is 100% fatal, for us and for all the 2 and 4 legged beings we love. Of course you're grieving hard for Peter. He deserves some Grand Guignol level grief. Think of all the stuff he stood by your side for, and that he was your shock-absorber for. Hugs across the miles, sweetie. We are all alone, but we can gather around the fire - virtual or real - and comfort each other with stories and company.
2 months, 1 week ago on Fifteen and a Half Years
“Christfuck, why can’t I think of anything interesting to say?”
As soon as you hear yourself (you, in that statement, is any/all of us) saying that, out loud or in your head, it's time for some weed gummy bears. Or a walk. Or some music. Or a phone call to a friend. 'Cause your muse - that ur-mother from which all creative blessings flow - she be bored'n'shit.
Just be sure to take a notepad, or your phone, for the ideas that will come out of the ether.
3 months, 3 weeks ago on Hard Truths, Day 29: Are You Being Interesting?
After getting a cancer dx, I found out just how very Big Awesome the offer of help was. Accepting it was admittedly difficult at first, but it got much easier veryvery fast.
In the years since, I've become one of a global (really) network of people who are the Go-To Gang when the unthinkable shows up in medical diagnosis form. The Citizen Scientists, the Google Translate of doctor-ese and lab values into human-speak, the "here's some ginger ale, sweetie" offerers-up when the worst of Chemo-matic is upon you. (Which you got a window into yesterday, sadly.)
You can only really GIVE help in meaningful ways once you've learned how to ACCEPT it. 'Cause otherwise, the giving is all about you, and not about the helping. We all need help. We could all get everything we need if we just ... let go and let help in.
4 months, 1 week ago on Hard Truths, Day 17 & 18: The Double Header Edition
@Emerald Bixby And thanks for playing today's round of "How can we drive Erika fuckin' CRAZY?" What do we have for our lucky winner today, Johnny? ... Johnny? Oh shit. We LET. JOHNNY. GO.!!!
4 months, 1 week ago on Hard Truths, Day 16: Give it the Fuck Up Already. Jeez.
This is perfection. Although I feel I must warn you that at least one person is gon' post a song from "Frozen" in the comments either here or over on the Book of Face. You have been warned. And high-fived HARD and HAPPY over this shit. And bacon-wrapped dates. Which make all our asses look great, right??
Jeebus. <cough> married <cough> two of them ... ME TOO. I am forever cured of the un-fucking fixer upper conditioned response. Finally.
4 months, 1 week ago on Hard Truths, Day 15: It’s Not My Fault, but it IS My Responsibility
@LKid All I can say is this: I loved Erika's post. Made me think. What I really love? It tipped me off to YOU, LKid. GawdDAMN, grrl. You have some serious muthafukin awesome going on.
4 months, 1 week ago on Hard Truths, Day 13: The Double-Edged Sword
I struggle with this one. Not that I call myself a bitch (although there is a card in my wallet, dating back to 1996, showing me to be a card carrying member of Heartless Bitches International - member #167, in fact - but that was for valid reasons at the time, mostly related to my stand-up set), but I do mos def get called a bitch. Not to my face, but the weasel-humpers are certainly doing it, 'cause I'm catching the whisper-stream.
Here's the thing. As I see it, at least. I agree wholeheartedly that calling oneself a bitch in service of a "bring it, motherfuckers!" message, is a loser. YET there has long and long (since was born during the Truman Administration, that's fo' realz) been a pretty solid minority of people in my landscape who have called me a bitch, and who clung to that like they would to a winning Megamillions lottery ticket. And I've been OK with that, 'cause those people were most certainly weasel-humpers. Of the sort who were all about subservience, and women being "little ladies," including the pat-on-head/chuck-under-chin, "you're a slut if you wear that" set of rules that I have no use for.
So I'll own bitch if it's flung my way. BUT I do not, nor will not, seek it out by being an asshole. Fierce in service of my mission? Bet your ass. But not any way that makes anyone else feel small.
So ... onward!
Fuck yeah. And George Clooney and Clive Owen namechecks. You win today in a walk.
4 months, 2 weeks ago on Hard Truths, Day 12: Good Enough Can Be Fucking Awesome
Birthday Seal of Approval!
4 months, 2 weeks ago on Hard Truths, Day 10: Beauty is a Sneaky Bastard
Balls to the wall. Good or bad. Can't live any other way, since that wouldn't be living ...would it?
9 months ago on I Don’t Think You Should Click This Post. At Least, I’m Pretty Sure. Kinda.
Oh, honey. So many asshats, so little time, right? And then to wind up literally feeling fear because of a SOFTWARE GLITCH? Seeiing that they're being sued by a former employee for harassment and discrimination tells me that they've got a frat-house culture going on over there. They likely don't give a flying rat's ass about your issue. Which just goes to show how very clueless they are ...
9 months, 1 week ago on How Tinder’s Software Glitch Broadcast My Private Information and Brought Me 4 Creepazoids in Less Than 24 Hours
Even better? This interview where Hopkins talks about his musical history: http://youtu.be/WoshdPpQST0
Together, they're a true treat =)
11 months, 1 week ago on Your Monday Kickass Graphic: Inspiration from Sir Anthony Hopkins
Nothing like a cancer journey to put one in the way of having a PhD in health literacy. Although, since I advocated for and then managed my 'rents care thru end of life before my cancer adventure, I already had at least a Master's in health literacy prior to my trip thru the health care car wash.
Why isn't "how your body works"-level science curricula on the syllabi of every single classroom, starting in pre-K? If kids are learning sentence structure at 4YO, why not the basics of human health? Like, say, what a common blood test result means? Really. I'm serious. Why not?
1 year, 1 month ago on Health literacy: Once we get our data, will we know what to do with it?
High revenue + low transparency = zero trust. Simple math, really. Finance, healthcare, and oil are notoriously high-revenue, low-transparency industries, so not terribly surprising that the public sees them as regulatory targets.
Here's an idea, for all of them: be more open. Open science, open business models, open books. Open hearts? Maybe that would be an inch too far, but the 1st three would put each of these industries closer to the hearts (and minds) of the consumers that form their revenue base ...
1 year, 4 months ago on
Harris Interactive: Harris Polls > Americans Less Likely to Say 18 of 19 Industries are Honest and Trustworthy This Year
You only get what you want by (a) IDing it and (b) working on laying your hands/mind/whatever on it. As the old bromide goes, "wishing doesn't make it so."
We are our own Sanity Clause. Grant your own wishes, bitches.
1 year, 4 months ago on The Bitch Slap: Fuck Santa
@Erika Napoletano Doll-baby, we are sisters - well beyond the red-hair thing. On to the weird narwhal identification project!
1 year, 4 months ago on The Bitch Slap: The Myth of the “Grown-Ass Man” and Other Dating Fallacies
New favorite phrase: "fall in weird with" - 'cause that IS the only way to ID a partner in crime, innit? I mean, it's nice to have a date, but I'd really rather have someone who might possibly be able to take me as I am, so I can return the favor. Dating sucks ass. Finding another narwhal (yep, totally outing myself there)? Now THAT'S progress toward happy =)
This is SUCH an important topic - one I'm delighted to see these two guys talking about. There is a perceived tension between the two, but I don't see that playing out as anything but ultimate synergy. Population health trends/evidence will deliver personalized medicine insights, personalized medicine will reveal population health insights/ trends. Lather, rinse, repeat.
1 year, 5 months ago on Is healthcare facing a battle of population health vs personalized medicine?
Wow - that's some powerful mojo.
I've lived a "fail forward daily" mantra myself for a while now, since who really has a choice to do otherwise, if we want to live a fully-authentic, awake life, right? I salute your ability to stop, drop, and roll away from your barriers to connection with yourself and your world.
Methinks you're some kinda powerful when it comes to helping your coaching clients access their own authentic awesome =)
1 year, 5 months ago on Guest Post: Failure Turns Me On (meet Mike Hrostoski)
Hey, you'll be living in a 2BR condo, so you won't have to get a snow-blower, right? WIN. Other than that ... Chicago is WONDERFUL. Snowing, blazing hot, windy as hell? Whatever, it's WONDERFUL. I grew up moving all the time (military brat) and miss that sense of "new adventures!" Go have some. Tell us 'bout 'em. You're a "new adventure" expert =)
1 year, 7 months ago on The Bitch Slap: The Part Where You Shit in Someone Else’s Cheerios
@belllindsay @ginidietrich I started my TV career as a field recordist - been there, done EXACTLY that. Hidden camera/mic stuff, too.
1 year, 8 months ago on There is No Such Thing as Off-the-Record
@ginidietrich not entirely true - granted, the big players will be more tuned in to off the cuff comments, but any real reporter will hear bells when someone says something like your guy did.
I saw the end coming, and it still felt like a punch in the gut. That's something so very Sally-Field-you-LIKE-me! - to have a long day in conversation about a topic you care about, only to shoot yourself in the head, figuratively speaking, at the very last moment. As a former net news engineer and then field producer, I saw this live more than once. And it's a little heartbreaking, even when the subject is a complete jerk.
@Erika Napoletano You've never sunk into the sinkhole as far as I can tell. Whether peeps agree with you or not ... you make 'em THINK, which is both a gift and a challenge. Keep on keepin' on, sister. You DO make a difference =)
1 year, 9 months ago on On Being White, Female, and Privileged
Hear you roar, grrlfren!! Every single decision we make in life can have an impact - good or not-so - on others. Living intentionally, or at least AWAKE, is kinda a requirement, right? However, given all the shiny objects and noise that mark a First World life ... how's a person of privilege to know when to drop the iPhone and actually talk to the human being next to them?
I'm grateful for a childhood spent on the move, and an adulthood spent mostly in the front row of the first draft of history (the news business, before it became the infotainment sinkhole of stupid). What gives me hope is the teens, 20s, and 30-somethings I spend a lot of time with who are connected, tech-savvy ... and have souls. 'Cause my bunch has turned into a heaving scrum of whining, mean-spirited fuckwits.
<things> Oy, do I need an editor ...
1 year, 9 months ago on Funny Things or Leaving Where You Love for What You Love
Shit HOWDY, grrlfren - how have you AVOIDED comedy writing for so fucking long? On of the thinks I'm proudest of is that the Education thing in my LinkedIn profile says "American Comedy Institute" - 'cause that shit's actual knowledge, not box-checking attached to a Stafford loan.
Go get well-blown in the Windy City, darlin' - and know that only the few, the proud, the REDHEADS can really rock the mic, comedy or keynote. Best of the best? BOTH. 'Cause funny is what makes keynotes meaningful/memorable.
Delighted to see that Dennis is telling his story as a clarion call to letting patients help. And you can NOT be surprised that the AHA doesn't "see" patients, at least not as part of the team. Patients aren't the customer in the eyes of the AHA, we're the product. So, sadly, are doctors. Still. The hospital-industrial complex sees only payers as partners ...
1 year, 10 months ago on “Patients are an unused part of the health care team” – Dennis Quaid – Chasing Zero : Discovery Channel
ohmiGAWD I think I hurt myself. GOAT DAFT PUNK DANCING. ohmiGAWD.
1 year, 10 months ago on Gin and Topics: Dancing, Rapping, and Prancing
@DallasK Gee, dude - troll much?
2 years, 2 months ago on Women’s Equality: It Starts with Us or it Stays an Illusion
Perception becomes reality. That starts between one's own ears - Danica Patrick can be forgiven (somewhat) for trading on her looks, given that's the currency that women have been taught to use first for millennia now. I think @Erika Napoletano and @ginidietrich are correct in observing that Danica's made her own brand-bed based on "expert advice" from those who see her core audience as NASCAR nerds.
However, as something of a female gear-head (lived alone on a sailboat for 12 years, and have a tool-set that would make Tim Allen jealous), I've never been a big fan of Danica's, largely because she's playing the "I got tits!" card. Both Lynn St. James and Shirley Muldowney own those appurtenances, too, but neither of them played that card. Without their track-blazing work, Danica'd be stuck in a permanent pit-stop.
Madeline Albright said, “There is a special place in hell for women who don't help other women." That includes not falling for the bullshit, and not buying into stereotyped brand messages. I still have one outstanding bit of business with GoDaddy, which will be terminated within the next 30 days. We owe it to our daughters, and our sons, to put our money where our mouths - and our beliefs - are. Hypocrisy ain't purdy, nor has it ever been.
Dang, how much I wish the Kaiser model was available in Jimbobwe, er, central Virginia.
However, the all-in-one approach outside of non-profits like Kaiser is too often more about leveraging data for increased reimbursement. Patients wind up sharing the top spot with the billing codes they represent, and trying to get access to one's own data from the EHRs of one's various providers is a challenge. Holistic, head-to-toe care and engagement has to be managed almost entirely by the patient.
I guess I'll have to continue to work toward moving home to San Diego one of these days!
2 years, 3 months ago on What innovation looks like in the medical offices of the future, Kaiser Permanente, La Mesa, California
#epicfail is always most epic when we're all by our ownselves, ain't it? Extreme pain followed by both a joy at no witnesses, and a twinge of sadness that no one can share in the laughter. LOL for realz, my brudda.
2 years, 3 months ago on My Epic Morning Fail
@bradmarley @JoeCardillo And it's ever so easy to just hit "unfollow" ...
2 years, 3 months ago on What is Your Professional Social Stalking Protocol?
@ginidietrich I'm so old I remember walking to work both ways, uphill, with no shoes =) Seriously, though, it is terrific to have knowledge at your fingertips. I say this as a one-time professional researcher, who remembers hours and hours in newspaper morgues and libraries, followed by hours and hours on the phone. The challenge of vetting info still remains, though, making me glad to still have a two-sources-confirm muscle ...
"The decade of the patient is only going to make you, compassionate, caring, curious, doctor, even more important in people’s lives. All you have to do is keep listening."
The decade of the patient sounds like medicine re-engaging with its humanity - not that it ever wasn't human, but that has been an unfortunate sideshow in the rise of technology, particularly in medicine: there's a risk that the tools will distract from the purpose of the project.
This is a terrific series, Doc - and puts me in mind of why I enjoy producing podcasts for SHM. Hospitalists are the family-docs within the hospital, and have the same compassionate/caring/curious ethos that you do.
Keep leading. Keep listening. That's how we'll all make progress.
2 years, 3 months ago on I am a Family Physician. What does it feel like, in the decade of the patient, and why you should care – Part 3 of 3
@bradmarley @AmyMccTobin OK, I gotta weigh in with a report from Jimbobwe: there are too many people that I want to connect with who are NO.WHERE.NEAR. me that, if I stuck with the only-f2f rule for FB I'd be pretty friendless. That's not to say that I don't have some great connections in my small city. But my business will not thrive on local - what I do, no one local thinks they should have to *pay* anyone local for doing it. Ergo, I stalk globally, and use Skype/Hangout to get at least a simulacrum of that eyeball-to-eyeball connection.
@belllindsay I think I might get extra credit for starting out in that hallway in what would have been the latter years of Don Draper's career, with additional credit for serving a sentence as a secretary in a network sales dept. before going completely ho-ville behind the camera in net news. But I could be wrong =)
@bradmarley Thanks! My approach was forged in the days long before the Wild Wild Web even existed, when I was still slaving away in Hunter Thompson's "cheap plastic hallway" - anything you DON'T want someone to know? DON'T DO/TALK ABOUT IT. And if you do, make sure there are NO surviving witnesses. =)
You mirror much of my own approach when it comes to cyber-stalking new business connections. I'm a live-out-loud-and-naked (figuratively on that last word!) person when it comes to my own social profiles, to the extent that much of my array is embedded in my email sig. But I live my life on the web, so I know both what I'm doing and the possible attendant risks. So I don't *post* anything I wouldn't be OK with seeing on Page 1, above the fold, of the NY Times ...
Damn, brother - you really do represent the highest and best potential for your profession. I'm not just blowing smoke, and I'm not saying this because we know each other. What you're outlining in this post series is literally the grassroots salvation of medicine.
Medicine is science, but it is the most human of sciences, in particular because it requires more than a little bit of art because each human being is so very damn different. Seen one patient, you've seen one patient. Predictive modeling and large-scale clinical studies can help make some things clear, but with genomics now widely available, having a great family doc who can act as a guide and leader to his patients is a prize above rubies.
2 years, 3 months ago on I am a Family Physician. Where did we come from (and why should you care)? – Part 2 of 3
Perfect. Bully the bullies with kindness, because it does indeed get better.
2 years, 3 months ago on Doctors know : It Gets Better