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Above the Fold

A Life Well Lived, Fights Well Fought

By KIM BELLARD

I first became aware of Casey Quinlan in 2017, when she published an article in Tincture, which I was helping to edit.  In it, she discussed how she’d had her medical history and advance directive tattooed on her chest, out of frustration with the lack of health information exchange in healthcare.  As she said, “ALL. THOSE. FUCKING. FORMS. ON. CLIPBOARDS.”

Well, I thought: she sounds like an interesting person. 

I started following her on Twitter, enjoying her outspokenness and agreeing with many of her points of view.  Then early in the pandemic Matthew Holt started THCB Gang podcast, and I got to participate in many of them with her as a co-panelist. It was sometimes hard to get a word in edgewise, but when she was on we always knew it was going to be an extra-lively session.  And the stories she could tell…

I never met Casey IRL.  I never worked with her. I never even had a one-on-one conversation with her, unless you count Twitter replies.  There are large parts of her life that I don’t know anything about.  But, boy, the force of her personality, the strength of her will, the sharpness of her intellect, and the fearlessness of her spirit were always clear. 

She fought her cancer as fiercely as she lived her life generally.  We knew the end was inevitable, but it nonetheless was hard to imagine.  There have been outpourings of support on Twitter, on CaringBridge, and elsewhere. I have to mention in particular the efforts of Jan Oldenburg, who was there with her near the end and also took on the various bureaucracies on Casey’s behalf when Casey was no longer able to. 

Casey’s passing is a loss to her friends, her followers, and the patient community at large.  And to those of us who got to know her even a little bit. 

Worms Aren’t So Dumb

BY KIM BELLARD

Chances are, you’ve read about AI lately.  Maybe you’ve actually even tried DALL-E or ChatGPT, maybe even GPT-4.  Perhaps you can use the term Large Language Model (LLM) with some degree of confidence.  But chances are also good that you haven’t heard of “liquid neural networks,” and don’t get the worm reference above.   

That’s the thing about artificial intelligence: it’s evolving faster than we are. Whatever you think you know is already probably out-of-date.

Liquid neural networks were first introduced in 2020.  The authors wrote: “We introduce a new class of time-continuous recurrent neural network models.” They based the networks on the brain of a tiny roundworm, Caenorhabditis elegans.  The goal was networks that were more adaptable, that could change “on the fly” and would adapt to unfamiliar circumstances. 

Researchers at MIT’s CSAIL have shown some significant progress.  A new paper in Science Robotics discussed how they created “robust flight navigation agents” using liquid neural networks to autonomously pilot drones. They claim that these networks are “causal and adapt to changing conditions,” and that their “experiments showed that this level of robustness in decision-making is exclusive to liquid networks.”  

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In Memoriam: Mighty Casey has moved on

Casey Quinlan, our friend and frequent THCB Gang member, died today. She may have gone quietly but she for sure lived her life way out loud. It’s not unexpected; she was diagnosed with a recurrent stage 4 cancer two years back, and I was lucky enough to have dinner with her on a rare east coast trip last June. She was hoping to come to the West Coast late last Fall but was too sick to make it. It looked like things were getting better and she was on THCBGang in February but soon things turned and she spent the last few weeks in hospice. She leaves a huge hole in the patient advocacy movement and a huge wave of love from her friends today on Twitter. And she remains the only person who has come up to me after I gave a talk and shared a shot of bourbon from her hip flask at 9 am! The talk was about the US health care system. So we both needed it! We’ll miss you Casey… Matthew Holt

THCB Quickbite: Ines Vigil, SVP Transformation & Services, Clarify Health Solutions

Ines Vigil, SVP Transformation & Services, Clarify Health Solutions talked with me at HIMSS23. A quick discussion about what Clarify Health does, and why the health system needs a huge database of 330m patients. Quick clue is that payment negotiations and benchmarking of clinical performance is the biggest demand, and Ines now actually heads up a consulting group that providers need to be overlaid on that data–Matthew Holt

HIMSS Takeaways: Size Doesn’t (Always) Count, Johnny Appleseed and MomGPT

By MICHAEL L. MILLENSON

Live and in-person once again, HIMSS 2023 attracted more than 30,000 attendees to the exhibit halls and meeting rooms of Chicago’s sprawling McCormick Place. Although no one person could possibly absorb it all, below are some harbingers of the health care future that stayed with me.

Size Doesn’t Count. Exploring the remote byways of the cavernous exhibition areas, it became clear that it’s not the size of the booth, but the impact of the product that counts. At a pavilion highlighting Turkish companies, for instance, R. Serdar Gemici stood in front of a kiosk that might fit into a walk-in closet.

The display listed an impressive roster of clients for a chronic care management platform, prompting me to stop to learn more. The smartphone user interface for “Albert,” the namesake product of Albert Health, the company Gemici co-founded and leads, immediately impressed me as one of the simplest and yet comprehensive I’d seen. (Indeed, the company website boasts of the “world’s simplest health assistant.”) Albert Health has begun working with England’s National Health Service and large pharmaceutical companies, though I found myself wondering how the name resonates in the Turkish- and Arabic-language versions the company touts.

HIMSSanity 2023! (Photo:HIMSS)

Another far-off cluster of kiosks hosted a company called Dedalus, which promised an interoperable, whole-person care platform. A demo included a graphic showing a breadth of holistic personalization and collaboration capabilities I’d not seen elsewhere. It turns out that while Dedalus only entered the U.S. market in late 2021 – which explains why, as the nice woman showing me the presentation noted, Americans mostly haven’t heard of it – Italy-based Dedalus Global’s software and services are used in more than 40 countries by over 6,700 health care organizations.

Oh.

Size Does Count. When I sat down with Dr. Jackie Gerhart, Epic’s vice president of informatics, and Seth Hain, senior vice president of research and development, at their very large and very busy booth, I had in mind Epic CEO and founder Judy Faulkner’s reputation as a tough, my-way-or-the-highway businesswoman. But Gerhart and Hain were so nice and down-to-earth, earnestly extolling the company’s culture of collaboration, that it was initially as disorienting as watching Elon Musk help a little old lady across the street. (A colleague assured me that, yes, this is actually the way many Epic employees act.)

Nonetheless, Epic remains a 500-pound gorilla, with a third of the hospital electronic health record (EHR) market. Its Cosmos platform, containing records from over 184 million patients and 7 billion encounters in all 50 states, is the largest integrated database of clinical information in the nation. The company is currently working to integrate Microsoft’s ChatGPT generative AI with Cosmos’s data visualization capabilities, which presents fascinating possibilities.

Ask around, though, and you’ll discover that not all hospitals are comfortable with Epic’s control of information. There will certainly be competitors, perhaps including the Mayo Clinic Platform.

A colleague related that many years ago big tech firms marketing their own EHRs warned prospective customers that choosing Epic meant relying on a company that might not be around very long. Instead, those competitors aren’t. Underestimating all those nice (and perhaps some not-so-nice) people at Epic would be a serious mistake.

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Two Cases of a Cool Skin Condition (Erythrocyanosis, Pernio or Chilblains, Anyone?)

BY HANS DUVEFELT

A month ago an oncologist called and asked me to see one of my heart failure patients whose chronically swollen legs seemed unusually blue but not cold.

Before I could get him in to see me, he ended up seeing a colleague, who called me up and said the man’s legs were cool and there was no Doppler in that office to check for pedal pulses. The man was sent for an urgent CT angiogram with runoff.

The test was perfectly normal. He had clean arteries.

When I saw him, the legs were less blue than they must have been and they felt OK but he had what looked like a shingles rash around his right elbow. There was some surrounding swelling and redness, so I prescribed an antiviral, an antibiotic and prednisone and arranged to see him back.

My diagnosis was erythrocyanosis. I have never seen a case but my instinct when I saw him was that this was a peripheral thermal regulation problem. So, a little bit of searching on the Internet gave me the diagnosis.

In follow up, the legs looked fine and the elbow rash was drying up nicely.

None of my research suggested a reasonable treatment option for his condition. But he was getting better so I didn’t have to worry about it at that moment.

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I Have Some Silly Questions

BY KIM BELLARD

Last year I used some of Alfred North Whitehead’s pithy quotations to talk about healthcare, starting with the provocative “It is the business of the future to be dangerous.”  I want to revisit another of his quotations that I’d like to spend more time on: “The silly question is the first intimation of some totally new development.” 

I can’t promise that I even have intimations of what the totally new developments are going to be, but if any industry lends itself to asking “silly” questions about it, it is healthcare. Hopefully I can at least spark some thought and discussion.  

In no particular order:

Why do we prefer to spend money on care when people are no longer healthy than we do on keeping them healthy?

The U.S. healthcare system well known for being exorbitantly expensive while delivering rather mediocre results.  Everyone laments it but we keep throwing more money into the system that is producing these results. 

We’d be smarter to invest in upstream spending.  Like making sure people get enough to eat, with foods that are good for us.  We’d rather spend money on diabetes or obesity drugs rather than addressing the root causes of each disease.  Or like making sure the water we drink, the air we breathe, the things we eat, aren’t polluted (how many toxins or microplastics have you ingested today?).  Not to mention reducing poverty, improving education, or fixing social media

We know the kinds of things we should do, we say we want to do them, but we lack the political will to achieve them and the infrastructure to ensure them.  So we end up paying for our neglect through our ever-more expensive healthcare system.  That’s silly.

Why is everything in healthcare so expensive? 

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Coverture – Could History Repeat?

BY MIKE MAGEE

All eyes were on Wisconsin – not last week, but in 1847. That’s when Wisconsin newspaperman and editor of the Racine Argus, Marshall Mason Strong, let loose in a speech on the disturbing trend to allow women the right to buy and sell property. It seems the state had caught the bug from their neighbor, Michigan, which was considering loosening coverture laws.

“Coverture”  is a word you may not know, but should. It was a series of laws derived from British Common Law that “held that no female person had a legal identity.” As legal historian Lawrence Friedman explained, “Essentially husband and wife were one flesh; but the man was the owner of that flesh.” From birth to death, women were held in check economically. A female child was linked by law to father’s entitlements. If she was lucky enough to be married, she lived off the legal largesse of her husband. They were one by virtue of marriage, but that one was the husband, as signified by taking his last name.

The practice derived from British law. Women were held in matrimonial bondage in England with the aid of ecclesiastical courts and the officiating presence and oversight of an Episcopalian clergyman. This meant control over getting married as well as well as the capacity to escape a marriage marred by abuse or desertion. Not that there was much call for divorce. Britain was a divorceless society. The richy rich occasionally could be freed by a special act of Parliament. But this was exceedingly rare. Between 1800 and 1836, there were less than 10 divorces granted per year in England. For the unhappy rest, it was adultery or desertion.

The divorceless society held for the first half of the 19th century in most of the states below the Mason-Dixon line, with South Carolina being the most restrictive. But every New England state had a general divorce law before 1800, as did New York, New Jersey and Tennessee. “Grounds” (which varied from state to state) were presented in an ordinary lawsuit by the innocent party.

Demand for divorce grew as America grew in the first half of the 19th century. With mobility came hardship and “odious abuse’, and increasing recognition that “a divorceless state is not necessarily a state without adultery, prostitution and fornication. It is certainly not a place where there are no drunken, abusive husbands.” And then there was the issue of property rights and its ties to economic growth in this still young nation.

America was rich in land, which rapidly translated into a fast-expanding smallholder middle-class. Relationships could shift on a dime, resulting in property disputes and threats to the legitimacy of children and one’s heirs. The numbers of land owners, fueled by westward expansion were enormous, and each had a stake in society. When push came to shove, economics won out over Puritan instincts – but not without a fight.

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Obesity is crippling the US, but there are solutions

By STEPHANIE TILENIUS

Well over a third of Americans are obese — and the percentage keeps growing at a staggering rate. Over the last twenty years, obesity prevalence grew from 30% to 42% of the US population and rates of severe obesity nearly doubled. If we don’t make serious changes to our healthcare system, it’s scary to think where we’re headed in a few short years.

The fact is, obesity is far from a cosmetic condition. It can be a devastating disease and was classified as such by the American Medical Association in 2013. Obesity is the leading risk factor for deadly diseases like type 2 diabetes, heart disease, stroke, and at least 13 types of cancer.

If we don’t stop the obesity epidemic in its tracks now, we’re in for a world of hurt. People’s lives, the healthcare system, and, by extension, the US economy could be headed for collapse if we continue to ignore it. Cardiometabolic conditions like obesity, heart disease, stroke, and diabetes cost the US healthcare system upwards of $500 billion a year in healthcare costs and another $147 billion in lost workforce productivity for heart disease and stroke alone.

And yet private and government-sponsored health plans are dragging their feet to address obesity head on. They know most people jump from health plan to health plan every few years, so they’re willing to take the chance that their members with obesity won’t develop high-cost complications soon enough to justify treatment now. And yet treatment could reverse the effects of obesity and downstream chronic disease, saving lives and billions of dollars in the long run.

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Can we trust ChatGPT to get the basics right?

by MATTHEW HOLT

Eric Topol has a piece in his excellent newsletter Ground Truth‘s today about AI in medicine. He refers to the paper he and colleagues wrote in Nature about Generalist Medical Artificial Intelligence (the medical version of GAI). It’s more on the latest in LLM (Large Language Models). They differ from previous AI which was essentially focused on one problem, and in medicine that mostly meant radiology. Now, you can feed different types of information in and get lots of different answers.

Eric & colleagues concluded their paper with this statement: “Ultimately, GMAI promises unprecedented possibilities for healthcare, supporting clinicians amid a range of essential tasks, overcoming communication barriers, making high-quality care more widely accessible, and reducing the administrative burden on clinicians to allow them to spend more time with patients.” But he does note that “there are striking liabilities and challenges that have to be dealt with. The “hallucinations” (aka fabrications or BS) are a major issue, along with bias, misinformation, lack of validation in prospective clinical trials, privacy and security and deep concerns about regulatory issues.”

What he’s saying is that there are unexplained errors in LLMs and therefore we need a human in the loop to make sure the AI isn’t getting stuff wrong. I myself had a striking example of this on a topic that was purely simple calculation about a well published set of facts. I asked ChatGPT (3 not 4) about the historical performance of the stock market. Apparently ChatGPT can pass the medical exams to become a doctor. But had it responded with the same level of accuracy about a clinical issue I would be extremely concerned!

The brief video of my use of ChatGPT for stock market “research” is below:

assetto corsa mods