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
Mighty Casey Media: Comedy Health Analyst
Stop screaming. Laughing hurts less.
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
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.
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.
Most of the people I meet in my voyages ’round healthcare system transformation, grassroots edition, arrived at the portal of #epatient via a trip through the medical-industrial complex. Either they, or someone they cared for, wound up getting “a thing” – cancer, Parkinson’s, multiple sclerosis, player to be named later – and they found themselves inside the medical care delivery system, bewildered, and looking for answers.
In short, most – not all, by any means, but most – are over 40.
Imagine my surprise, and delight, when I was sent a report on a survey conducted with 385 randomly selected patients across the US*, with most of the responses coming from 18 to 35 year old millennials (people born 1982 and after). The survey asked them their opinions on shared decision making, open notes, and shared medical visits, three new medical practice models that are rising in adoption.
Here’s the context of the survey questions:
The survey results make me think we might finally be reaching a tipping point toward positive change, given that a big majority (76%) of respondents said they were extremely or very likely to use shared decision making. Over 60% were extremely or very likely to welcome open notes:
The demographics of the survey respondents was a pretty representative sample as far as chronic conditions go:
One surprise in the demographic detail was that more men responded than women. Given that, historically at least, women have been more likely to use the medical care system (annual Pap smears, reproductive health visits) than men, the fact that men outnumbered women in this gives me even more hope. Are dudes getting it? “It” being that their health is their responsibility, and that a relationship with a good primary care provider is a good life plan.
To recap, millennials want shared decision making and open notes. Shared/group appointments, not so much. I think that the shared/group appointment approach would be best deployed in “building health literacy” settings: condition-specific education on diabetes, for example. I also think that telemedicine needs its own survey, given that practice model could be used both real-time or asynchronously via secure video links.
The millennial generation has grown up with digital tools and instant access to information. I seriously doubt that they’re going to be willing to suffer the slings and arrows of outrageous wait times, or outrageous balance billing, when they seek medical care. Hope for real system transformation may have crested the distant horizon, and be riding toward us. May its speed be supersonic.
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.
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