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Susannah Fox on Teens & Digital Health Study

How are teens and young adults engaging with digital health? Results of a national survey asking just that were released today by Susannah Fox (Former CTO at US Dept of HHS) and her research partner, Victoria Rideout.

You can check out the full report of the findings here, but I spoke with Susannah in April, just as she and Victoria were starting to draw some insights from their work.

Hearing her talk about the survey at this stage of synthesis is not only unique (most researchers won’t talk until the findings are published) but more so because it adds a layer of understanding to the final results now that they’re here.

We get her candor about how teens and young adults are a wildly viable – yet very overlooked – market for digital health…

We see how she’s trying to formulate a much larger hypothesis about what healthcare can learn about social media from a generation that has never lived without it and, more importantly, view it as having a positive impact on their well-being…

And, probably most inspiring to me, we see an approach to health data that stands out for its warmth. For it’s love, really. In a world of big data and clinical trials, it’s endearing to hear from someone who is taking a more anthropological approach and who has fallen absolutely, head-over-heels in LOVE with the personal side of her dataset.

As we all clamor for a patient-centered end, we’d be remiss to underestimate the value of a human-centered starting point. Watch Susannah Fox for a strong model of how this can be done in health research.

Filmed at Health DataPalooza, Washington DC, April 2018. Find more interviews with the people pushing healthcare to better tomorrow at www.wtf.health

Medical Care in Rural India

By SAURABH JHA

I’ve humbly realized that doctors aren’t always indispensable. When I was three, a compounder – a doctor’s assistant – allegedly saved my life. Dehydrated from severe dysentery, I was ashen and lifeless. My blood pressure was falling and I would soon lose my pulse. I needed fluids urgently. An experienced pediatrician could not get a line into my collapsed veins. When hope seemed lost, his compounder gingerly offered to try, and got fluids inside my veins on the first attempt. My pulse and color returned and I lived to hear the tale from my mother.

So, on a recent trip to India, I was intrigued by Birju, a compounder in my ancestral village in Bihar, who the villagers revere like a doctor. After assisting a city physician for ten years, Birju had started his own practice. He has no formal training in healthcare. Even his education was partial – he left school at fourteen to help his father, who also was a compounder.

I wanted to see Birju practice his craft. So, I visited his clinic which is actually a shop. Birju sells stationery, conveniences such as shaving foam, and medications, which was just as well, as I needed Imodium to calm my angry Americanized bowel.

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The Past, Present and Future of Health Care

OK, so it’s a tad of an ambitious title… but it was a talk that I gave in Finland last month. I had fun looking at the development of health and technology and suggesting a structure for the future. Plus I got to tell my Neil Armstrong joke. The talk was part of the Upgraded Life Festival in Helsinki and you can see some of the other speakers videos on their channelMatthew Holt

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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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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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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The Ethics of Keeping Alfie Alive

By SAURABH JHA

Of my time arguing with doctors, 30 % is spent convincing British doctors that their American counterparts aren’t idiots, 30 % convincing American doctors that British doctors aren’t idiots, and 40 % convincing both that I’m not an idiot.

A British doctor once earnestly asked whether American physicians carry credit card reading machines inside their white coats. Myths about the NHS can be equally comical. British doctors don’t prostate every morning in deference to the NHS, like the citizens of Oceania sang to Big Brother in Orwell’s dystopia. Nor, in their daily rounds, do they calculate opportunity costs for keeping patients alive on ventilators.

Conversations such as this are vanishingly rare.

Administrator: “It’s costing an arm and leg keeping this sick baby alive – to balance the annual budget we need to stop dialyzing a granny.”

ICU doctor: “We’ll have to send poor Ethel to her grave. That’s a shame. She was beginning to grow on me.”

Health Ethicist: “Wait, let me check with National Institute of Clinical Excellence, the rationing experts, who should be relieved of intensive care first. Perhaps it should be Winston, not Ethel – because Winston is an alcoholic. We need to make rationing scientific and fair.”

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