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Why I Tattooed My Health Data Over My Heart | WTF Health with Casey Quinlan

WTF Health – ‘What’s the Future’ Health? is a new interview series about the future of the health industry and how we love to hate WTF is wrong with it right now. Can’t get enough? Check out more interviews at www.wtf.health

How can patients help usher in a better future for healthcare? Start speaking up. LOUDLY.

In this WTF Health interview, meet one of health’s most outspoken patient advocates, Twitter voices (@mightycasey) and podcasters, Casey Quinlan of Mighty Casey Media, who talks about her patient journey as a cancer survivor — and why the awful experience led her to tattoo a QR code linking to her electronic medical record to her chest.

Casey’s ‘physical political protest’ is tied to her passionate views about the lack of data liquidity in healthcare and how patients suffer as a result. She’s launching a new “If-You’re-Selling-My-Health-Data-Cut-Me-In” Movement and weighs in on why more patients aren’t clamoring after their health data to push real change in the healthcare system.

Filmed at Health Datapalooza in Washington DC, April 2018.  

Radiologists versus Machines

By, SAURABH JHA MD

In the ongoing battle between radiologists and artificial intelligence, is the real risk not that computers will replace radiologists, but that radiologists will become machines? This lecture delivered at the annual meeting of the ARRS explores the evolution of radiologists, from inference to quantification, and what it means for the field.

https://www.pscp.tv/w/1BdxYRoeekoKX

The Evidence Crisis: Causal Inference – Don’t be a chicken (Part 3)

By ANISH KOKA

Part 1

Part 2

Physicians have been making up numbers longer than people have been guessing weights at carnivals.  How much does this statin lower the chances of a heart attack? How long do I have to live if I don’t get the aortic valve surgery?

In clinics across the land confident answers emerge from doctors in white coats.  Most of the answers are guesses based on whatever evidence about the matter exists applied to the patient sitting in the room.  The trouble is that the evidence base used to be the provenance of experts and anecdotes that have in the past concluded leeches were good for pneumonia.

And so came the randomized control trial to separate doctors from homeopaths.  Random assignment seeks to achieve balance between two groups for everything but the treating variable to isolate the effect of the treatment.  But does randomization really guarantee a balance between groups?  At least the known confounders may be measured in the two groups, but what about unknown confounders?

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India’s Health Insurance Experiment. Who will be the winners?

By SAURABH JHA

Though the exact cost of Modicare, the government’s extension of health insurance for poor people, estimated at one lakh crore (a trillion U.S. dollars), is open for debate, what is not disputable is that the cost of insuring India’s poor won’t fall with time. A sure way of accelerating healthcare inflation, that is speeding the rate of increase of healthcare costs, is by subsidizing or paying for health insurance. Insurance is like Newton’s Second Law of Motion – the velocity keeps increasing as long as the force is applied.

Healthcare is a peculiar industry. Cars get cheaper but medical care doesn’t. The Maruti eventually became cheaper than the Ambassador, and more aesthetically pleasing than its Neanderthalic predecessor. Medical care doesn’t get cheaper because a life saved from cancer is a life waiting to be killed by another disease, which needs treating, too. Survivors of cancer get heart attacks and survivors of heart attacks get cancer, and survivors of both get dementia.

It’s like a restaurant where you can’t just pay for lunch – if you pay for lunch you have to pay for breakfast and dinner and may be a few samosas in between the meals. But unlike eating, consumption of medical care is not guarded by satiety. The insatiable medical sciences keep delivering even more expensive ways death can marginally be deferred. For example, the once dreaded stroke which leads to paralysis is now treatable. However, the treatment is not cheap and comprises clot busters, dangerous drugs with fatal side effects. Further, to treat stroke you need rapid diagnosis by modern imaging – that is you need CAT scans and radiologists. If penicillin for pneumonia is like eating at a roadside dhaba, treatment for acute stroke is fine dining at the Taj.

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Can Medicaid Expansion Survive?

Amid fresh political rancor and legal machinations in the ongoing war over the Affordable Care Act (ACA), there’s a bright spot: Medicaid. At least for now.

This matters. True to predictions made by Obama and supporters when the ACA became law (2010), it has taken years and a lot of blood, sweat and tears to get to this moment.

As a reminder, the U.S. Supreme Court in 2012 ruled that states could opt out of the ACA’s Medicaid expansion—leaving each state’s decision to participate in the hands of governors and state lawmakers.

On June 7, after a 4-year pitched political battle, Virginia became the 33rd state (plus DC) to expand Medicaid under the ACA. The Virginia expansion is projected to encompass 400,000 low-income Virginians.

The state swung in favor of expansion after Democrats gained the governorship and more seats in the legislature in 2016. But, importantly, key moderate Republicans relented.

Four other non-expansion states could join Virginia over the next year or two. They are Maine, Idaho, Utah, and Nebraska.Continue reading…

Misdiagnosis: Obamacare Tried to Fix the Wrong Things and Prescribed the Wrong Treatments

Today THCB is happy to publish a piece reflecting the learnings from Charles Silver and David Hyman’s forthcoming book Overcharged: Why Americans Pay Too Much For Health Care, shortly to be published by the libertarian leaning Cato Institute. In subsequent weeks we’ll feature commentary from the right radical libertarian zone on the political game board (Michael Cannon) and from the left (Andy Slavitt) about the book and its proposals. For now please give your views in the comments–Matthew Holt

There are many reasons why the United States is “the most expensive place in the world to get sick.” In Part 1 of Overcharged: Why Americans Pay Too Much For Health Care, we show that the main reason is that we pay for medical treatments the wrong way. Instead of having consumers purchase these treatments directly, we route trillions of dollars through third-parties payers – both government and private insurers.

Relying on third party payers has many consequences — few of them good. To start with, this arrangement removes the budgetary constraint that would otherwise cap the amount consumers are willing to spend. By minimizing the direct cost of treatments at the point of sale, third party payment arrangements alter everyone’s incentives fundamentally. Consumers no longer need worry about balancing marginal costs against marginal benefits; instead, they have an incentive to use all treatments that have any potential to help, regardless of their prices. When millions of consumers act on these incentives, total spending skyrockets and consumers collectively wind up worse off, because their fixed costs spiral upward too. Heavy reliance on third party payers creates a classic failure of collective action.

It isn’t just consumers. Providers love third party payment as well. And why not? Once providers have access to the enormous bank accounts of third party payers, the sky is the limit, at least until third party payers start setting limits on the amounts they will pay and saying no to unproven and/or cost-ineffective treatments that doctors want to provide and patients want to receive.

Not surprisingly, it has turned out to be extraordinarily difficult and politically unpopular for third party payers to set such limits. Obamacare’s appeal derives largely from two requirements: health insurance plans must accept all comers, including applicants with preexisting conditions that require expensive medical treatments; and health plans must provide unlimited benefits (i.e., no annual or lifetime spending caps). From an individual consumer’s perspective, what could be better than having access to unlimited amounts of money to spend on medical needs? From society’s point of view, though, this combination is a recipe for disaster.Continue reading…

The EBM Wars: Manufacturing Equipoise (Part 1)

By ANISH KOKA

The phone rings.  It’s not supposed to be ringing.  It’s 2 am.   The voice on the other line is from an apologetic surgery resident.

Resident: There is this patient..

Me: Yes, go ahead. Please.

Resident: He’s tachycardic.

Me: How fast?

Resident: 160 ?

Me: What’s the blood pressure?

Resident: 130/90

Me: Rhythm?

Resident: An SVT I think.. I gave adenosine.  Nothing happened

Me: Audibly groaning.  I’ll be in..

Forty five minutes later I’m at the bedside of a decidedly ill appearing man.

I want to be triumphant that his heart rate is only 145, and a quick glance at the telemetry monitor above his bed uncovers juicy p waves in a cadence that suggests this is no primary electrical arrhythmia.

Something is very wrong somewhere – the heart in this case is an innocent bystander being whipped into a frenzy to compensate for something.

At the moment the whip is a norepinephrine infusion being used to keep his blood pressure up.

I ask the nurse if the amount of norepinephrine infusing has been stable.  She replies that his dose has been slowly escalating.

Eureka! I think – the heart rate response in this case is being driven by the norepinephrine – a powerful adrenaline that acts on beta receptors and alpha receptors within the body that increase heart rate and constrict the blood vessels to raise blood pressure.  Fix the cause of the low blood pressure, come down on the norepinephrine, and perhaps the heart rate would be better.

But it turns out this particular post surgical patient doesn’t have a medical cause of low blood pressure I can find.  I cycle through cardiac ultrasounds, blood gases, steroid and volume challenges, and try inching down on the norepinephrine.

All of it is to no avail.  I’m growing more and more convinced this problem is surgical in nature. Perhaps an infarcted piece of bowel?  All I know is that the man acts like he has no peripheral vascular tone.

An interesting thing happens shortly after.  The norepinephrine drip runs out.

As one nurse runs to get another bag from the pharmacy – a quick cascade of events unfolds.

The brisk upstroke from the arterial line that marks the pressure wave generated with every beat of the heart starts to dampen.  The color seems to visibly drain from the patients face, and he begins to complain that his vision is getting blurry.  His systolic blood pressure is 70 – an almost forty point drop within a minute of the norepinephrine running out.

I call for help.

I try to keep a level tone.  Project control, not panic.

“Open the code cart, I need a half a milligram of epinephrine”

“You’re going to be ok, sir.  Hang with me.”  I squeeze his hand.

He closes his eyes

The code cart – a fully stocked cabinet on wheels with almost everything you need for resuscitation efforts – is wheeled into the room. The epinephrine vial is handed to the nurse, and hurriedly pushed.

Within seconds, I can see the blood pressure and heart rate rise.  The patient’s grip on my hand relaxes.  Or maybe its my grip on his hand.  I forget which.  His vision returns to normal as his blood pressure ‘normalizes’.

Of course nothing has been fixed.  Why his blood pressure remains low continues to be a mystery.  The bag of norepinephrine soon isn’t enough even at its maximal dose.  The same scenario (hypotension -> pallor -> vision loss ) recurs 30 minutes later, and another bolus of epinephrine aborts a rapid spiral towards pulselessness.

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The verdict is in: All three of CMS’s “medical home” demonstrations have failed

Between September of 2016 and last month, CMS released “final evaluations” of all three of its “medical home” demonstrations. All three demos failed.

This spells bad news not just for the “patient-centered medical home” (PCMH) project, but for MACRA. The PCMH, along with the ACO and the bundled payment (BP), is one of the three main “alternative payment models” (APMs) within which doctors are supposed to be able to find shelter from the financial penalties inflicted by the MIPS (Merit-based Incentive Payment System) program which was recently declared to be unworkable by the Medicare Payment Advisory Commission. Medicare ACOs and virtually all Medicare BP programs are also failing. Thus, we may conclude what some predicted a long time ago – that neither arm of MACRA (the toxic MIPS program and the byzantine APM program) will work.

In this post I describe each of CMS’s three PCMH demos, review the findings of the final evaluations of the three demos, and then explore the reasons why all three demos failed. I’ll conclude that the most fundamental reason is that the PCMH is so poorly defined no one, including the doctors inside the PCMHs, knows what it’s supposed to do. That’s not to say that the hopes and dreams of PCMH proponents were never clear. They have always been clear. PCMH proponents have said over and over the PCMH is supposed to lower costs and improve care. But a clear expression of hopes and dreams is not the same thing as a clear description of what it is you’re dreaming about.Continue reading…

Fighting Hubris in Medicine

By ANISH KOKA

The weekend started with a tweet about an elderly man with atrial fibrillation.  Atrial fibrillation is an arrhythmia of the heart that predisposes those who suffer with it to strokes.  The strokes are a  result of clots being thrown from the heart into the brain.  The typical treatment for this condition in those deemed high enough risk is to thin the blood to help prevent these clots from forming, and thus reducing the risk of stroke.

The problem with thinning the blood is that the risk of bleeding increases, and it does so especially as one advances in age.  It doesn’t help matters that the risk of having a stroke also increases with age.

In a 101 year old deciding on the best course of action is thus a challenging one.  It is easiest when patients are adamant about a certain path.  Far be it from me to tell a centenarian what to do.   In this case, the man who had been alive for two world wars chose to come off the anticoagulant he had been dutifully prescribed.

I queried the audience

Most leaned towards stopping Pradaxa, and some responded that there wasn’t a wrong answer.

I asked the question because this was a decision that had been made four years earlier.  The consequences of that decision were playing out now.

No one lives forever.  In a parallel world, the anticoagulant continues and this is a discussion about the brain hemorrhage that resulted.  These aren’t the only two possibilities. He could also have avoided both types of stroke, attended a few more great grand kids birthdays and passed away in his sleep from a cardiac arrhythmia.

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A Tale of 2 FDAs

By ANISH KOKA

Frances Oldham Kelsey by all accounts was not mean to have a consequential life.  She was born in Canada in 1914, at a time women were meant to be seen and not heard.  Nonetheless, an affinity for science eventually lead to a masters in pharmacology from the prestigious McGill University.  Her first real break came after she was accepted for PhD level work in the pharmacology lab of a professor at the University of Chicago.  An esteemed professor was starting a pharmacology lab and needed assistants, and the man from Canada seemed to have a perfect resume to fit.  That’s right, I said man.  Frances was thought to be a man’s name, and the acceptance letter accepted Mr. Frances Oldham.  Given the times, her Canadian mentor advised the young Frances she not write to inform the Chicago professor of the mistake but to simply sign the acceptance letter as Miss Oldham.  The rest, as they say, is history.  Ms. Frances Oldham arrived in Chicago in 1936, and just two years later was asked to work on figuring out what caused one of the worst poisonings in American history by the nascent US Food and Drug Administration (FDA).

The FDA at the time was a small organization within the federal government that had come into being a few decades earlier after the passage of one of many progressive laws passed to protect consumers from rapacious pharmaceutical companies of the day.  At the time there was no standard for claims that could be made to an unsuspecting public and no requirement that drug companies specify what ingredients were being consumed by the public.  The companies of the day would take alcohol, water and coloring mixed together – give the formulation a name, get a US patent, and make millions by heavily marketing testimonials of cures to all that ails directly to the consumer.  At one point, it was estimated that there was more alcohol being sold via ‘patent medicines’ than at liquor stores.

Sadly, it was not medical professionals that put a stop to this, but muckraking journalists like Samuel Hopkins Adams who exposed the seamy underside in a series of articles for Collier’s Weekly entitled The Great American Fraud.   Popular outrage followed publication of this series in 1905 and in response, the first draft of the FDA came into being by order of Congress in 1906.

The initial purpose of the FDA was a small, but important one – ensure the correct labeling of drugs being sold to the public.  The 1906 act – fought tooth and nail by industry – mandated that ingredients such as alcohol, cocaine, heroin, morphine and cannabis be accurately labeled with contents and dosage.  To understand the scope of the problem at the turn of the century, understand that Coca-Cola (Coke) was sold initially as a ‘patent medicine’ that was marketed as a cure for headaches, impotence, morphine addiction as well as a number of other ills.  The main ingredients?  Cocaine and Caffeine.  Current drinkers of Coke will be happy to know that cocaine was eliminated from the formula in 1903.

The FDA as we know it now is a result of the passage of the Federal, Food, Drug and Cosmetic Act (FFDCA) of 1938 that came as a reaction to national tragedy in 1937 that once again drove home the point that the public needed protection from private corporations.   The matter was a simple one that involved an ingredient that actually worked – sulfanilamide.  Sulfanilamide was an antibiotic that killed bacteria by preventing the synthesis of Folic Acid.  Humans are relatively primitive and don’t make Folic acid – so it isn’t toxic to humans.  That is, unless you’re the chief chemist of  S. E. Massengill Company, and you create a preparation of sulfinilamide that is dissolved in di-ethylene glycol (DEG).  DEG is toxic to humans – the first case reports of toxicity had been reported six years earlier.  Unfortunately the chemist, Harold Watkins, who worked for the company was unaware as this was not widely known at the time.  Watkins simply added some raspberry flavor to the sulfa dissolved in DEG, and the company founded by a Tennessee medical student who saw more opportunity in selling drugs to doctors than practicing medicine started distributing the drug widely.  No animal studies or any type of premarket testing was required at the time, and so the drug went straight from the lab to the consumer.  More than a hundred people died.

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