From HX Refactored in Boston in June 2017, this – “Jeopardy Meets The Price Is Right, Healthcare Edition”
HXR 2017: Casey Quinlan: Jeopardy + The Price Is Right: Health Care Mashup Edition from HxRefactored on Vimeo.
From HX Refactored in Boston in June 2017, this – “Jeopardy Meets The Price Is Right, Healthcare Edition”
HXR 2017: Casey Quinlan: Jeopardy + The Price Is Right: Health Care Mashup Edition from HxRefactored on Vimeo.
The Insane Clown Car Posse (hat tip to my buddy Robb Fulks for that lovely turn of phrase) that’s currently at the helm of the ship of state here in the good old USA has started to give us a peek at their plans for US healthcare. The phrase “shit show” seems to have been invented just so it could be used to describe the excrescence that’s emerging, inch by fetid inch, under the banner of the AHCA, full title “American Health Care Act.” [Personally, I call it “the new National Eugenics Plan,” since the savings the legislation’s backers crow about are clearly gained from sick folks just dyin’ quicker.]
Maybe we could tag it as GOTCHA, “Government Out To Cut Healthcare Access?” Asking for a friend.
“Make America Sick Again!” seems to be the sales pitch here. After the gnashing of teeth, rending of garments, and fisticuffs that marked the passage of the Affordable Care Act in 2010, the ACA haters – we’ll call them “the entire Republican Party, and all who sail in it” – spent the rest of Obama’s Presidency voting to repeal the law, while doing very little else.
What the ACA, or “Obamacare,” accomplished was to finally put the theory of universal healthcare access on the table for Americans, who had spent the 20th century watching pretty much every other developed nation on the planet create either single payer (a la Britain’s NHS) or insurance-based universal access (in Germany and Switzerland) healthcare delivery systems for their folks.
I say “theory of universal access” because, like all Congressionally-ground sausage, it’s a mix of top cuts of awesome (10 Essential Benefits! Tax Subsidies on Premiums!) with awful offal from the abattoir floor (too much power concentrated in the hands of AHIP, ridiculously narrow networks, uneven Medicaid expansion). But it was a start, after every President since FDR trying, and failing, to get any kind of national healthcare access plan in place.
After trying to throw Obamacare from the train, on a loop, lather/rinse/repeat, for years, once Cheeto Voldemort (I refuse to say, or type, his name – work with me here, people) took up occupancy at 1600 Pennsylvania Ave., the ACA-haters wasted no time in getting their “repeal and replace” dance of the seven veils started. They need at least seven veils to hide this mess, but they’re starting to run out of cloth.
Here are the Greatest Hits (to humanity, and human life) brought to us so far by GOTCHA-care:
The people who put Cheeto Voldemort in office are the biggest losers here, which just proves that low information voters can wind up the punchline in a joke they *thought* they were in on. Our 45th President’s broad promises to “cover everybody” at “lower cost” is laughable in the face of the numbers out of the CBO, and the language in the AHCA itself.
As I said at the outset, this is a shit show. People’s lives are on the line, but the jerktastic folks defending this mess are outright lying about its impact on working class and middle class Americans. My own Congressional (un)representative, Dave Brat, answered my question about rural hospitals and uncompensated care at his Town Hall in February 2017 by pointing at the community clinics that hospitals are setting up to help people who can’t access care … THESE ARE PROGRAMS MADE POSSIBLE, AND PAID FOR, BY THE AFFORDABLE CARE ACT.
Sorry, was I shouting? <deep breath>
Tom Price, the “healthcare is a privilege, not a right” orthopedic sawbones now at the top of the US Dept. of Health and Human Services, outright lied on “Meet the Press” on Sunday, March 12, when he said “nobody will be worse off financially” under the American Health Care Act.
He prevaricated again, at a CNN Town Hall on Wednesday, March 15, when colon cancer survivor Brian Kline asked him point blank, “Why do you want to take away my Medicaid expansion?” Price said, “The fact of the matter is we don’t. We don’t want to take care away from anybody. What we want to make certain, though, is that every single American has access to the kind of coverage and care that they want for themselves.”
Price is fronting that myth of “choice” I mentioned above. They’re lying, they’re ginning up one of the biggest tax bonanzas for the already-wealthy in modern history, while simultaneously reducing access to care for the average American Joe and Jane.
Oh, and if you’re reading this, and thinking, “HAH! You losers, I have coverage through work!” … don’t. Employer sponsored insurance – which I have been saying needs to get clubbed on the head and buried in the woods for a while now – is on the bubble, too, since the Republican plan eliminates a key penalty on employers who don’t offer their employees health coverage.
The American Cancer Society hates this thing. The American College of Physicians hates this thing. Consumers Union *really* hates this thing.
We’ve got to get the insane clowns out of their car before they grind us under that car’s wheels. Time to start taking up some figurative weapons, folks. If the pen – or the keyboard – is mightier than the sword, start swinging that QWERTY blade at your Congressional representatives, now.
Your life is on the line.
Really.
I’ve spent a good portion of the last two months on the healthcare equivalent of the political stump – called the “rubber chicken circuit” in political circles. Thankfully, there was no actual rubber chicken served during these sojourns, although there was the incident of the seductive breakfast sausage, followed by my solo re-enactment (off stage) of the bridal salon scenes from the movie “Bridesmaids.” I will draw the veil of charity (and gratitude for travel expense coverage) over the details of that incident, and just advise all of you to stick to fruit, cereal, or bagels at conference breakfasts. ‘Nuff said.
My original editorial calendar plan was to turn this into a series of posts, broken down by focus into technology and clinical categories. However, since a big part of my goal in standing on the barricades at the gates of the healthcare castle, waving my digital pikestaff in service of system transformation, is breaking down silos … well, go grab a sandwich, and a beverage. This is gon’ be a long one.
In early February, I headed to Orlando for the first Health Information and Management Systems Society (HIMSS) Patient Engagement Summit. I was asked to participate in two panel discussions, one titled “Patient Perspectives: The State of Engagement,” the other “Can We Talk? The Evolving Physician-Patient Relationship.” Both were moderated by Dr. Patricia Salber, the bright mind behind The Doctor Weighs In.
Being a person with no letters after her name (like Elizabeth Holmes [update: she’s trash, so redacted] and Steve Jobs, I’m a college dropout), I’m used to showing up at healthcare industry events and being seen as something of a unicorn fairy princess. That’s how people commonly called “patients” are usually viewed in industry settings outside the actual point of care. Healthcare professionals/executives are so used to seeing us as revenue units, or data points, or out cold on a surgical table, but not as walking/talking/thinking humans, they can do a spit-take when meeting an official “patient” at an industry conference. Which is fun if they have a mouthful of coffee, but I haven’t seen anyone actually get sprayed yet.
All kidding aside, I really have to hand it to HIMSS for their uptake speed on seeing people/patients as valuable voices in the conversation about healthcare IT and quality improvement. In the time since they first noticed (in 2009, I believe) that people like ePatient Dave deBronkart, Regina Holliday, and others might have something to add to the discussion, they’ve made a visible effort to include people/patient voices in their national programs. Of course, had they not invited patients to present at their Patient Engagement Summit, they would have been line for a public [digital] beating … and so there we were: Amy Gleason, Kym Martin, Alicia Staley, and yours truly, ready to grab a mic and speak some truth.
A favorite tweet during the opening keynote by Dr. Kyra Bobinet, a friend of mine via our mutual membership in the Stanford MedX community:
“Patient engagement is nourishing healthcare”-@DrKyraBobinet #Engage4Health
— Simone (@MyrieTash) February 9, 2015
I see patient engagement as healthcare that nourishes the people it serves, and also as a nutrient for the healthcare delivery system itself. Healthcare itself will get better, in its body (clinicians and all other folks who work inside the system) and in its spirit (its culture), with authentic connection – engagement – with the human community who seeks its help in maintaining or regaining good health.
Both panels went well, and the audience seemed to be both awake, and interested in what we had to say. For those of us who have been working the user – PATIENT – side of healthcare transformation, it’s frustrating that we’re still saying the same things to professional audiences that we’ve been saying for (in my case) close to 20 years now. But those of us on the patient side of this change management rodeo can sense a paradigm shift, and are starting to believe that we’re seeing transformation slowly deploy across the healthcare system. As the oft-repeated William Gibson quote goes, “The future is here, it’s just not evenly distributed.”
I should be able to, via dashboard radio button, select EHRs to share my #qself data with. YES, REALLY. #engage4health — Casey Quinlan (@MightyCasey) February 9, 2015
“The patient value needs to be recognized and compensated.” @kymlmartin #Engage4Health
— Tom Sullivan (@SullyHIT) February 10, 2015
Patients ARE engaged. We’re working our butts off to get medical professionals and healthcare execs on the same page as us. Like the old story goes, when it comes to bacon and eggs, the chicken’s involved, but the pig’s fully committed. In the bacon-and-eggs of healthcare, patients are the bacon. We’re all in, and we know more, in many ways, about how to fix the system than the “professionals” do. Alicia Staley said, again, what she says consistently to healthcare audiences, “You need a Chief Patient Officer on your board.” So … get one. And we all need to be wary of blaring headlines, which can be very misleading when it comes to the real health risks we all face:
This is going to be my favorite slide for this meeting. #Engage4Health pic.twitter.com/Xi2V3OC8DP — Kathy Nieder MD (@docnieder) February 9, 2015
Healthcare doesn’t have to reinvent the #infosec wheel. Finance/banking, another high-reg/high-risk industry, is great model. #hitprivacy — Casey Quinlan (@MightyCasey) March 5, 2015
In early March, I winged my way out to San Diego, one of my several hometowns (growing up a Navy kid means you get more than one) for the HIMSS Privacy + Security Forum. I was a panelist for the last session of the conference, which I knew meant that many of the attendees would already be in the TSA screening line at Lindbergh Field, but I was going to share my thoughts with whomever stuck around, even if it was just the busboys. Our session was titled “What Matters Most: Patient Perspectives on Privacy & Security,” and what happened at the end of our panel was something I had hoped for – several of the folks who had stuck around come up to us and said, “that panel should have opened this conference!”
When it comes to IT security, the healthcare industry is rightly terrified, given the epic bitch-slap that a HIPAA fine can be ($1.5 million dollars per incident) – and the irony of the Anthem data breach affecting up to 8.8 million of their members making headlines the week before this conference was not lost on me … or any of the other folks at the HIMSS Forum meeting. Yet it’s critical to note that access, by patients and by clinicians, particularly at the point of care, to all the relevant data necessary to deliver the right care at the right time to the right patient, is still an undelivered promise across the health IT landscape. So don’t be Mordac, Dilbert’s Preventer of Information Services – we have enough of him. He’s like a freakin’ virus.
De-identification is a quaint notion of the past. — @johnemattison #HITprivacy
— Tom Sullivan (@SullyHIT) March 6, 2015
“#HIPAA has become a magic incantation.” — @MightyCasey #HITprivacy
— Tom Sullivan (@SullyHIT) March 7, 2015
“We killed healthcare in the US when we started to mass produce the office visit.” — @CareSync CEO @travislbond#HITprivacy — Tom Sullivan (@SullyHIT) March 7, 2015
Hilariously, the day before I traveled to San Diego, I had to threaten a HIPAA complaint to get my records transferred from one provider to another. I had been asking for TWO MONTHS for the rads practice where I had gotten my mammograms 2009 through 2011 (twice a year in 2009 and 2010, given my Cancer Year of 2008) to send my scans and reports to my current mammography radiologist, and it took a voicemail with a HIPAA violation threat to get someone to call me back. My records are so damn secure that NO ONE can get them, except for “Robert in the basement” at [rhymes with … Bon Secours]. It felt like I was talking to Central Services in the Terry Gilliam movie “Brazil.” And people wonder why I have a QR code linked to my health history tattooed on my sternum …
I for one threw privacy overboard like a dead cat by planting this on my chest (PW protected, tho) pic.twitter.com/kH1BZLzzhY #hcsmca
— Casey Quinlan (@MightyCasey) August 6, 2014
Speaking of right care/right time/right patient, two days after the HIMSS Privacy + Security Forum wrapped, the Lown Institute’s RightCare 2015 conference kicked off just down the street.
Dr. Bernard Lown is the cardiologist who invented the cardiac defibrillator in the 1960s, and who won the Nobel Peace Prize in 1985 for his part in creating the International Physicians for the Prevention of Nuclear War. The Lown Institute, founded to continue the work on healthcare and human rights that Dr. Lown has devoted his life to, states as its mission “We seek to catalyze a grassroots movement for transforming healthcare systems and improving the health of communities.”
In short, this event made me feel like I’d taken a trip in the Wayback Machine to my college days 1970-1973 in the Haight Ashbury in San Francisco … without the LSD, but with all the fire of my youth, mixed with the wealth of mature knowledge I’ve managed to velcro on to myself in the decades since. The real beauty part? There were lots of young people in the room, who are the age today that I was 40 years ago (in my early twenties), speaking up for the human rights of the people served by the healthcare system. The ones commonly called “patients.”
I got a chance at a scholarship to #Lown2015 after meeting Shannon Brownlee during our work on the Patient & Family Engagement Roadmap, and our attendance at Dartmouth’s SIIPC14 “informed patient choice” conference last year. She tipped me off that scholarships were available, I applied, and got lucky by snagging one. Doubly lucky, because it put me in the room while some of the leading voices on the clinical side of medicine called out the industry they work in for being slow to fully enfranchise the people they serve – patients – by being too driven by money, and not driven enough by their own humanity. A sampling:
Excited to see a bunch of #AF4Q faces at #Lown2015! A multi-faceted, multi-stakeholder movement toward the #rightcare — Deborah Roseman (@roseperson) March 9, 2015
“If a little chemo is good, more must be better” tragic tale of unproven, ineffective BrCa Rx related by @ShannonBrownlee at #Lown2015 — Kenny Lin, MD, MPH (@kennylinafp) March 9, 2015
Shannon Brownlee: “The medical system today helps many, but harms too many “#LOWN2015 — Pink Ribbon Blues (@PinkRibbonBlues) March 9, 2015
Medical industrial complex designed perfectly as revenue generator. Designed HORRIBLY for delivery of effective right-care. #lown2015 — Casey Quinlan (@MightyCasey) March 9, 2015
On the other side is the recognition of the mission and purpose of medicine, which is, at its root, to serve. #Lown2015 — Lown Institute (@lowninstitute) March 9, 2015
“American people hire lobbyists to represent their interests in Washington.” Said no one, ever. (Except @TheOnion) #lown2015 — Casey Quinlan (@MightyCasey) March 9, 2015
Jeff Kane: “Cancer is like a bomb going off in the living room.” #lown2015 cc: @BC_Consortium — Pink Ribbon Blues (@PinkRibbonBlues) March 9, 2015
“I can cure homelessness. You just house them and it’s cured. Completely curable problem.” Mitch Katz from LA County #Lown2015 — Chris Moriates (@ChrisMoriates) March 9, 2015
“I am still trapped in a system whose main interest is diagnosis and treatment. But my interest is health.” -Mitch Katz #Lown2015 — Lown Institute (@lowninstitute) March 9, 2015
“Ethical erosion” = med students having their altruism surgically removed via medical school. #lown2015 — Casey Quinlan (@MightyCasey) March 9, 2015
Don’t just describe the problem. Don’t get stuck on the negative. Ask what to do to make things better? ~Harlan Krumholz @hmkyale #lown2015 — Casey Quinlan (@MightyCasey) March 10, 2015
Harlan Krumholz demolishes the informed consent sham. Resonates: this was the crux of my dad’s MRSA demise. Fresh tears. #Lown2015 — BartWindrum (@BartWindrum) March 10, 2015
Peter Drier’s remarkable engagement in his care/cost negotiation underscores that vulnerable patients don’t have that wherewithal #Lown2015 — Deborah Roseman (@roseperson) March 10, 2015
Patty Gabow: in addition to #rightcare, we need #rightprice. #amen #hcpt #Lown2015 — Deborah Roseman (@roseperson) March 10, 2015
Public needs to express collective voice for new #patient bill of rights. Right to info about cost & quality. #lown2015 #Time4Change — Harlan Krumholz (@hmkyale) March 10, 2015
Only 7% of those with terminal illness in CA talked to their doctor about end of life. Over 70% wanted to. #Lown2015 — Emma Sandoe (@emma_sandoe) March 10, 2015
imagine if the trillion excess in health care spending went to social determinants of health. #Lown2015 — Janice LynchSchuster (@jlschuster827) March 11, 2015
“We will never have a healthy society if we don’t address the poverty and racial disparities that drive our system.” -Steve Nissen #Lown2015 — Lown Institute (@lowninstitute) March 11, 2015
Nissen challenges value of CME– miseducation, paid for by those who stand to profit. ROI for companies, not for care. #Lown2015 — Deborah Roseman (@roseperson) March 11, 2015
Nissen: Millions of dollars flow to physicians from pharma/device companies. “In any other world, this would be called bribes.” #Lown2015 — John Mandrola, MD (@drjohnm) March 11, 2015
“Counteract the hopelessness that sustains the status quo.” –@SEIU_Eliseo #Lown2015 — Lown Institute (@lowninstitute) March 11, 2015
This is key!! ‘Know when to quit’. Will be a BIG challenge to #Rightcare movement. How measured? #lown2015 — Gregg Masters (@2healthguru) March 11, 2015
And, because it just ain’t a movement unless this gets thrown down:
Power to the M*****F****** people, yo! Seriously, did I really *have* to say it? Make healthcare work FROM. THE. GROUND. UP. #lown2015 — Casey Quinlan (@MightyCasey) March 11, 2015
The bedrock message here? The democratization of knowledge that’s been delivered thanks to the Information Age has lifted the scales from the eyes of the early-adopter people/patients who are on to what healthcare is now, and what it must become to remain sustainable, or even relevant. Patients are coming up off their knees. The occupants of the ivory towers of medicine must descend from their aeries, or risk being flung from the parapets. Like winter …
Now that I have, for my sins, been tagged as a patient engagement expert, I figure that entitles me to the occasional rant on the topic of the healthcare system – particularly the US iteration thereof – and its utter inability to understand how to connect and communicate effectively with its customer base: patients.
If you’ve been a patient, for anything beyond a short trip to your primary care doc for something simple (and easily diagnosed) like a laceration or a minor infection, you know that arriving at the doors of The Medical-Industrial Complex is like being the new kid in school.
There’s an old joke about bacon and eggs – the chicken is involved, but the pig is committed. In the ongoing sketch comedy/Shakespearean tragedy that is medical care. the clinical teams who deliver care, and the facilities in which they deliver it, are most certainly involved. Patients? We’re fully committed. We are engaged, we are fully present. What we’re not getting from the delivery side is an authentic invitation to engage.
en•gage•ment: noun, a formal agreement, i.e. to get married; an arrangement to do something at a specific time; the act of being engaged, i.e. “continued engagement in trade agreements”
Seems simple, right? Patient appears, asking for care. Clinical professionals deliver that care. Patient happy, clinicians happy, everybody wins. Oh, wait – did the doctor wash her hands before she started the physical exam? If the patient is aware of the importance of handwashing in preventing infection, and asks if the doctor lathered up and rinsed according to protocol, does that patient risk being labeled “difficult” or “aggressive”?
If so, so much for patient engagement. Given that the statistics on handwashing in healthcare settings aren’t at 100% (~ 90% for RNs, < 75% for attending MDs in a 2008 study at an Ohio hospital), clinical folks are as non-compliant as the patients they slap that label onto.
Then there’s the whole medical records dance. I got so sick of filling out health history forms that I said, out loud and online, that I’d get a barcode tattooed on my neck if it meant I never had to fill out another one. Even if you’ve been to a practice countless times before, you’ll likely have to fill one out EVERY. TIME. you have an office visit. Then, if you actually want to SEE your health history – the one contained in the electronic health record (EHR) system, hospital or office, or even the old school paper version – it’s like petitioning the Vatican for a dispensation: begging, more paperwork, and the forking over of cash money.
[Side note: I did tattoo my medical history on myself – not a barcode on my neck, but a QR code on my sternum. It’s visible online as my Twitter avatar – without the password that opens the page, of course.]When you need medical care, you want to know what your treatment options are. Your doctors should be using a shared decision making approach, where they outline the options and possible outcomes of each one. They also should be able to provide you with COST impacts of the various options, but they don’t – usually because they can’t, since the array of insurance plans they take don’t make cost/price information easy to find.
We can thank what I call “stupid payer tricks” for the opacity of the money side of medical care delivery. Cost – the reimbursement numbers for physicians and facilities, along with the patient co-pay numbers – is considered “proprietary negotiated rate information” that’s the property of the insurance company. They dole it out in drips, only AFTER the bill has been submitted. Imagine buying a car, or a house, and signing the sales contract with no price on it, while being told that the bill will arrive in 60/90/120 days, and that’s what you’ll have to pay.
Hard to engage with something like what’s outlined above, isn’t it?
Add to all this the perception by the people who aren’t regular users of the healthcare system that healthcare is something that happens “over there, to sick people, but not to me,” and you have a complete lack of system literacy for healthy folks. Until, of course, they wind up at the hospital door with “a thing” – a car wreck, cancer – when they have to navigate new territory while sick, and in pain, without a map.
What’s needed here is not another earnest academic study from the health-system side, examining how to drive patient engagement. What we need is a grassroots-led effort, by expert patients who have created maps navigating the “new territory” mentioned above, to work with the doctors, nurses, administrators, data geeks, and scientists who recognize the need to flip the patient engagement paradigm from top down – Ivory Tower Rules – to bottom up: built with patients.
Let patients help.
Back when I slaved in the depths of Hunter Thompson’s “shallow money trench,” we had a phrase we deployed whenever we thought the grownups were keeping us in the dark. We would say we’d been sent to Mushroom Land, where one is kept in the dark and fed sh*t, the better to keep us from making, or spotting, trouble.
These were the very same grownups who, every four years like clockwork, would look at the calendar and say, “Holy crap, there’s a Presidential ELECTION this year?” But I digress.
The medical-industrial complex has, for eons, kept its customers (commonly called “patients”) in Mushroom Land pretty consistently. For a very long time, that was facilitated by a lack of access to scientific knowledge for the common human, but that started to shift in the 19th and 20th centuries, as public education rose across most parts of the globe. Of course, “math phobia” and “science denial” are still pernicious little devils, but the average person with an 8th grade literacy level and an internet connection can find out about just about anything.
I had the privilege of being awarded a seat at Dartmouth’s 2014 Summer Institute for Informed Patient Choice, or SIIPC14 for short, in late June 2014 (last week, as I write this). The purpose of the conference was to chew on topics and issues related to not keeping patients in the dark when it comes to making informed decisions about their health, their healthcare, and their relationships to the medical care teams they work with to gain or retain “best health.”
This event had some serious meat on its bones, both in reputational throw-weight of the presenters and breadth of stakeholder groups represented in the audience. Dartmouth itself is no stranger to uber-smart-ness, particularly in healthcare, given the work and thinking that emerges from Geisel School of Medicine and the Dartmouth-Hitchcock Medical Center (one of 23 Pioneer ACOs in the US).
The conference was put together by Glyn Elwyn, an MD who is on the faculty at Dartmouth’s Center for Health Care Delivery Science, and its Institute for Health Policy and Clinical Practice (mouthful), and Ben Moulton, who is one of the leaders of the Informed Medical Decisions Foundation and on the faculty at Harvard Medical School teaching health law in clinical practice.
I’m not going to walk you through the whole program, because who wants to read 15,000 words, really? What I will do is walk you through a very short list of the presentations that cast the longest memory shadow, for me at least, in the conference aftermath.
How I had not known of Wennberg’s work is a mystery, but it doesn’t need solving ‘cause I now not only know about it, I’m officially an evangelist for it. He’s one of the people behind the Dartmouth Atlas (if you follow that link, pack a lunch – it’s a glorious time-sink for healthcare geeks), and has participated in more thought-provoking and system-transforming research than pretty much anyone I’ve met in my health policy wonk travels to date. His presentation drilled in on what he calls the “Glover phenomenon,” referring to the research of James Alison Glover, a British physician who studied medical practice variation region to region in the UK, with some interesting results that essentially boil down to (my paraphrase) “everyone’s doing it, so I will, too.”
Dr. Wennberg’s talk was the perfect scene-set to kick off the conference, because his work, inspired by Glover’s, points up the price of keeping patients in the dark about why their medical care team is recommending any particular course of treatment for [whatever]. Simply “because I said so” – which was the prescriptive rule in medicine for … ever – is a really bad idea if you’re trying to reduce unnecessary treatments, control costs, or create a healthcare system that runs on scientific evidence, not patriarchy. Shared decision making requires that all participating in that decision have a grasp of all the facts, including possible outcomes.
Keeping patients in the dark = REALLY. BAD. IDEA.
“The care they [patients] need and no less, want and no more.”
That’s a quote from Dr. Mulley’s involvement with the Salzburg Global Seminar in 2012, and is a pretty good anchor for his message at SIIPC, which was titled “The Silent Epidemic of Misdiagnosis.” That misdiagnosis can come from misattribution of the patient’s outcome preferences (do doctors even ASK most of the time?), which then puts both patient and care team on a trip down the rabbit hole. This approach causes everything from unnecessary surgery to unwanted extraordinary measures at the end of life to who-knows-HOW-many unneeded pharmacological “interventions.”
One quote from Mulley’s talk really stands out for me: “Doctors talk about the science of medicine to preserve their authority and the art of medicine to preserve their autonomy.” Shifting that boulder will take some persistent pushback from patients who want to work with participatory medicine practitioners. (Alliteration-itis.) Click this link to read a paper by Dr. Mulley, Dr. Glyn Elwyn, and a colleague on why patient preferences matter.
Keeping patients in the dark = REALLY. BAD. IDEA.
I met Elliott Fisher at Health Datapalooza in DC in early June of this year, and sat pretty much at his feet (in the 2nd row) as he delivered the opening keynote at that event. Since he’s the director of Dartmouth’s Institute for Health Policy & Clinical Practice, I knew he’d be presenting at SIIPC and looked forward to hearing what he had to say.
As an MD with deep experience working to build Dartmouth-Hitchcock’s Accountable Care Organization (ACO), Fisher has a 3D view of the healthcare delivery landscape. He rings all my favorite changes, particularly in the areas of cost and quality of care delivered to patients. My favorite slide from his deck said, simply, “No outcome, no income.” In the gold rush that US healthcare has been since … forever, now sucking up close to 20% of GDP – and making the defense lobby look like homeless people in the process – tying money to outcomes, and to the patient preferences that define those outcomes, seems downright revolutionary.
Since I am myself a revolutionary when it comes to pushing for healthcare system transformation, I’m thinking of Elliott Fisher as a brother from another mother, on this topic at least.
Keeping patients in the dark = REALLY. BAD. IDEA.
If the smart folks running the Dartmouth thinkiness on healthcare system transformation are smart enough to invite the wide panoply of players who attended this conference to listen, and to talk about, how that transformation might be driven … where’s some outcome there? Bueller, Bueller … anyone?
There was much conversation traffic on Twitter throughout the conference, anchored by the hashtag #SIIPC14 (clicking that link will take you to Symplur’s Healthcare Hashtag Project, where you can parse the SIIPC conversation). Much of the undertone of that conversation was “OK, so what’s going to be DONE here?” From the e-patient perspective, that’s a perpetually unanswered question at ALL healthcare related conferences, even our own.
As individuals, and even as groups (professional and consumer), we’re arrayed against what I call the K Street Mafia, who I called out during the Q&A after Elliott Fisher’s talk on the last day of the conference. I also said that silos where the greatest danger to the health of all mankind. Used to be missile silos that risked global destruction. Now it’s just silos of doctors, data geeks, revenue cycle management types, policy wallahs, software developers, patients, and a partridge in a pear tree. I said, “End the silos – can I get an AMEN?” To which the assemblage responded with a rousing “AMEN!” But … did it move the needle, any needle, at all?
Even though gatherings like SIIPC are dedicated to including the patient voice, the scales are not at all balanced when it comes to the power matrix in healthcare. As I said in a long conversation on my Facebook wall in the aftermath of my trip to Dartmouth, “It is not lost on me that, in most of the rooms where I am invited to share my recommendations for system transformation, I’m paying my own way amongst a large cohort of well-dressed […] folks on expense accounts.”
This is IN NO WAY meant to snipe at the great folks who put on the Dartmouth conference, and who invited me to attend. I was delighted to be there, and am deeply grateful for the experience. I met some great people, and connected with some others that I already knew.
But … I’ve been doing this for a while now. When will the number 210,000 (the number of avoidable medical error deaths in the US annually) go back to being just another number? When will the cost of care stop being a game of Where’s Waldo? When will expert patients be seen as equals when it comes to getting paid for the work we do to drive system transformation?
The plethora of horror stories that emerge from the “medical professional” ranks about their own terrible experiences when they’re on the other end of the scalpel from their usual position hasn’t made a dent in the stone wall that is the medical-industrial complex’s change management rodeo.
We all have to work on this. The outcome is still uncertain, because institutionally, healthcare seems to be dedicated to “business as usual” in spite of all efforts to shift that thinking. We – the change agents – are arrayed against some powerful forces with very deep pockets.
Are we stuck in a bad remake of “Groundhog Day”? Only time will tell … but this e-patient is very impatient. She’s been doing this for more than 20 years, and she hasn’t seen much “transformation” yet.
I’ve been heard in these precincts and elsewhere on the topic of employer-backed group health insurance, and the reasons why I believe it’s an idea whose time has gone. Granted, I’ve felt like a little voice crying in the wilderness, but with a firm conviction that I was just an early adopter of this opinion.
So imagine my glee when a headline popped up in my Google+ news feed that the Robert Wood Johnson Foundation had published a study showing a distinct downward trend in the number of companies paying for employee health insurance.
The key findings:
In short, less than 60% of adults who are employed full-time now have employer-backed group health insurance coverage. My response in the G+ thread? HALLELUJAH.
The prospect of losing group health insurance scares the pants off of those who still have that coverage. What I say to those who are currently pants-ing themselves in fear of losing their coverage is: keep calm, and carry on. There is a path to group coverage – even keeping the coverage you now have – if your employer wants an exit strategy on paying for health insurance for their employees.
I’m not an HR expert. I’m not in the insurance industry. I’m a journalist and writer who has built up, over a couple of decades, a wealth of both research and anecdotal experience in buying healthcare, buying health insurance, and being a member of the great unwashed, um, un-insured. When it comes to healthcare and the purchasing of same, I’ve been there, done that, have the t-shirts/knife scars/stories to prove it.
Here’s my recommendation on how the scenario of shifting group health insurance from “company pays” to “individual pays” unfolds:
Think I’m outta my mind? That I’m singing a solitary chorus of crazy here? Not so much. Sears and Darden Inc. (Red Lobster, Olive Garden, and LongHorn restaurants) have initiated health benefits changes that are mighty like what I outline above.
That’s my story, and I’m stickin’ to it. Got an opinion you’d like to share? Want to beat me up in the comments? Go for it.
Unless you’ve been living under a rock since October 1, you’ve heard that Healthcare.gov, the site where Americans can shop for health insurance, had a rocky start in life. OK, it was an epic mess.
I was one of the people who was eager to jump on the site on October 1, since I haven’t had health insurance since I completed cancer treatment in 2008. That cancer diagnosis and treatment put me in the pre-existing condition pile, which put renewal insurance premiums for my individual coverage at an eye-popping level. You can read the details on that here. On October 1, I hopped on my Mac, and surfed over to Healthcare.gov … and had the same experience everyone else seemed to be having:
That continued over the following seven days, with me developing a nice little flat spot on my forehead from head/desk-ing my way through many attempts per day at getting past the first step of creating a profile on the site. Even when I had completed that process of creating a profile, every time the site announced “Success! Click here to continue.” I clicked “there” and … got a blank page.
On October 8, I realized that I, and the site’s developers, might have missed something. I was using Google Chrome, my default browser, and the dominant browser across the web. Could it be that the dim bulbs that built the Frankenstein that is the Healthcare.gov site optimized the site only for native browsers? I opened Safari, and discovered that yes, they were indeed that dim, because even though the site loaded at the speed of a slug on Quaaludes, it did load. And “Success!” allowed me to continue the enrollment process. No blank pages.
I re-enacted scenes from 1995, when I would log on to Netscape to download email on my dial-up connection: open the page, hit “go,” and then make coffee. When I returned with a hot cup of joe, I’d repeat the process on each subsequent page, working in another tab while the site loaded the next page in the process. I managed to complete the entire enrollment process, save for the last “pull the trigger” step of hitting the ENROLL button, because I wanted to make sure I had the money for my first month’s premium available. Which turned out to be unnecessary, since when I did hit the ENROLL button, I got a message saying that my selected insurer would be contacting me about billing. That conversation happened a few days ago, and I’ve paid my first month’s premium.
As of January 1, 2014, I’ll have health insurance again for the first time since December 31, 2008. WIN.
Here is the upside of what I saw in my voyage through Healthcare.gov:
Here’s the thing that made me go “WTF?”:
On the whole, this is a big win for me, and other uninsured people who fell into the “pre-existing condition” bucket. By the way, just being female was considered a pre-existing condition until the Affordable Care Act passed. In spite of the views of Fox News talking heads (all male, of course), gender equality needs to exist in all phases of public life, including health insurance.
Bottom line? I win.
Welcome to the MightyCasey–hosted edition of the HealthWorksCollective #HCSM Review, a peer-reviewed compendium of timely, on-topic writing about healthcare from across the web.
Last Friday, I put out a call for posts about healthcare costs and/or health insurance innovation for the HCSM community. Here’s the brain candy that flew over the MightyCaseyMedia transom:
First up: an examination of STD occurrence alongside STD testing costs in the New York metro area from ClearHealthCosts.com (@chcosts), written by Sherry Mazzocchi. This is a deep dive into the incidence of STDs across New York City, with snapshots of what consumers actually pay for STD testing at a number of facilities across the region. Runs from $0 (for members of a subscription medical practice) to $600 for women who visit a Westchester County practice. Like Uwe Reinhardt has said for years, healthcare pricing is chaos behind a veil of secrecy.
For patients looking to pierce that veil and direct-pay for their care, ClearHealthCosts’ founder Jeanne Pinder offers up this post – New ways of paying: Cutting out the middleman. Seems like everybody’s looking for a better way to hold down health costs. In a number of cases, that means patient and provider are getting together directly, without the middleman (the insurance company). You could start asking, “How much is that?” and acting on the answer.
With Oct. 1 and the dawn of the ACA’s new health insurance marketplaces, Jeanne Pinder shares What it means to you: Oct. 1 and buying health insurance. Maybe you avoid the topic of health insurance, but you can’t any longer. If you’re not covered by employer insurance, Medicare or Medicaid, you will need to know things about buying insurance (or choosing not to buy it). Her post offers some actionable advice on how to figure out what the marketplace means to you.
From one of my favorite places, Costs of Care (@CostsofCare), comes a post by David Marcovitz titled “A Routine Denial,” about how it feels to have an expensive test declined by your insurer after it’s been done. If you’ve ever been on the receiving end of one of these notices, you know that it feels anything but routine. After the appeals process. David discovered just how chaotic healthcare pricing is. A great read.
Like David, Brave Bosom founder Andrea Downing (@BraveBosom) discovered that she had a genetic predisposition to a disease. In her case, it was BRCA, the genetic mutation that increases risk for breast cancer. Andrea is a leader in the young “previvor” community, and offers up this post on what healthcare reform means for her, for her community, and for other people who have potential destructive dynamite in their DNA. Genetic testing and counseling is a terrific resource; worrying how it might impact your insurance coverage shouldn’t have to be a consideration when you’re making a decision about your health.
ePatient Dave deBronkart (@ePatientDave) is a world-famous (really) patient activist. He’s written two books, and spoken at conferences across the globe. His post “Ratty boxers: what it means to really, truly have no money” resonated powerfully for me, since all e-patient experts face the same challenge: patients aren’t yet seen as experts worthy of remuneration by the healthcare industry. Dave has helped move the needle on that – here’s hoping that his message spreads into the hearts and minds of organizations who are still expecting patients to pay for the privilege of speaking to audiences who need to know what we know: how to make healthcare more human-friendly.
Alan Brewington (@abrewi3010) blogs at PainTalks.com – he’s a guy with chronic arthritis from some rather epic sports injuries. He sent along a post on the pending health insurance exchanges from the front lines in a Red State: Idaho. Titled “Health Insurance Exchange, Idaho, Arthritis, and Me,” Alan’s post walks the reader through an exploration of the new health insurance exchange marketplace, figuring out what kind of coverage is available at what premium cost. As a chronic pain patient, Alan knows more about the ins and outs of health insurance than the average guy his age, and makes some good observations about what it will take for healthcare reform to work.
Closing our cavalcade of #HCSM awesome, here’s a post from Carolyn Thomas at MyHeartSisters.com (@HeartSisters) on how online communities help patients cope, and give them the power to move on. “Discover. Join. Leave.” is a great journey through the life cycle of online patient groups. Some come and stay, others arrive looking for specific help, all make a contribution when they can. Peer-to-peer healthcare is a web, just like … the web. Carolyn tells a great troll-taming story, too – another terrific read.
If you’d like to participate in the HealthWorksCollective #HCSM Review – click this link to look at the schedule, and find out how to get on the list. Thanks for reading, and I’d love to hear your thoughts in the comments!
This story from PBS Newshour clearly shows how important it is to ask questions, and shop around, when it comes to prescription drug prices.
Think a generic drug guarantees a lower price? Not so much. Watch this story, and learn how the same generic drug can cost anywhere from $11 to $455. The best way to get the lowest price? The same way you shop for shoes, or appliances: research online, ask local retailers, and make an informed decision.
Last week’s post called medicine in the U.S. a monopoly. I took some heat for using that metaphor from some of my economist and journo colleagues, and realized that I needed to make a clarification: Medicine is a game of Monopoly, not a true economic monopoly. My very-snark-infested point was, and always is, that the pricing model in healthcare in this country is about as fair as a crap game or, perhaps, a round of Monopoly.
More grist for my point arrived this week in the form of a TIME special feature, Bitter Pill: Why Medical Bills Are Killing Us. In it, reporter Steven Brill walks the reader through the chaos behind a veil of secrecy in healthcare pricing, starting with an under-insured man’s treatment at MD Anderson Cancer Center in Texas, which involved waiting – while wracked with the chills and fever caused by his non-Hodkin’s lymphoma – in a crowded hospital reception area until the check for his treatment cleared. He wound up having to use a credit card to pay $7,500 toward his medical costs before they’d initiate his chemotherapy. By the way, MD Anderson is a non-profit hospital. A close review of that man’s hospital bills revealed a 400% markup on many of the cancer drugs in his chemo treatments.
Another example in the TIME feature is one involving a $21,000 false alarm – a woman was having chest pain, and was taken by ambulance to a local hospital. After testing, it was discovered that she was suffering from indigestion. The Medicare billing for the trip would have been around 80% less than what the woman – who didn’t have insurance – was billed for the hospital visit. However, since she was 64, and not eligible for Medicare, she was billed $21,000. Yikes.
At the root of the cost determinations in both of these cases is the hospital’s chargemaster list – the Great and Powerful Oz of that hospital’s billing structure. When pressed, hospital spokespeeps will say “no one pays those rates, they’re just a guideline” or “those lists have been around forever, we only use them as a reference” – but uninsured and under-insured people are asked to pay them. Hospital executive will also say that the pricing on the chargemaster list is justified by the fact that the hospital has to provide charity care to indigent patients. While it’s true that there are patients who can’t pay for the care they receive, the vast majority of patients are covered by either a private health plan, or Medicare, or Medicaid. The rates paid by those payers are negotiated with the hospitals. Why can’t an un- or underinsured person negotiate a fair cash price, too?
The TIME story is a great read – it’s long, but it’s worth every minute of the time it will take you to read it. One patient story that stood out for me: a union guy in his 30s, with severe back pain, was treated by having a spinal-nerve stimulation device implanted. An outpatient procedure, with the nickel-and-dime hospital chargemaster billing adding up to $87,000 – the device itself, which wholesales for $19,000, was billed to the patient at $49,237 – put the patient over his annual health insurance coverage limit of $60,000. He was on the hook for $47,000 of that bill. Again, yikes.
This trip down the medical billing rabbit hole pinged my radar in the same hour that a post by Brian Klepper on KevinMD.com did. It appears that the American Medical Association’s star-chamber price-setting committee, the RUC (about which I’ve ranted here before), has been given a pass by a federal appeals court in Georgia on having to hew to the same public-interest rules that govern other federal advisory groups. In other words, the AMA gets to continue to set healthcare prices by setting the dollar value assigned to each and every billing code in healthcare. Fox, meet henhouse. Again.
What was I saying about medicine not being a monopoly? Well, OK, it’s not a monopoly. But it’s sure a shootin’ a game of Monopoly, with hotels on every single street. And patients just have to keep paying up after every roll of the dice.