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Saturday, November 28, 2015

Getting a handle on the costs of care

I'm on sort of a blog hiatus at the moment. My wife and I are celebrating our 35th wedding anniversary in a cabin above Gatlinburg, TN in the Smokies. Lying low, doing a good bit a reading and talking with my best friend of nearly 42 years.

We'll be back in California Tuesday night.

Saw this bit of news last night.

Hit the lower right corner "expand" icon next to the arrow.

NY Times article on the topic: What Are a Hospital’s Costs? Utah System Is Trying to Learn
SALT LAKE CITY — Only in the world of medicine would Dr. Vivian Lee’s question have seemed radical. She wanted to know: What do the goods and services provided by the hospital system where she is chief executive actually cost?

Most businesses know the cost of everything that goes into producing what they sell — essential information for setting prices. Medicine is different. Hospitals know what they are paid by insurers, but it bears little relationship to their costs...

More to come...

Monday, November 16, 2015

On "Big Data" and "the spaces that live between facts"

Up next, in considerable triangulating detail, as is my customary M.O. I just finished reading it. Highly recommended. Finally, I make get closer to the heart of this woolly, elusive "art of medicine" thing.

"The advent of new medical technologies will not diminish bias. They will amplify it. More human arbitration and interpretation will be needed to make sense of studies—and thus more biases will be introduced. Big data is [sic] not the solution to the bias problem; it is merely a source of more subtle (or even bigger) biases.

...The greatest clinicians who I know seem to have a sixth sense for biases. They understand, almost instinctively, when prior bits of scattered knowledge apply to their patients— but, more important, when they don’t apply to their patients. They understand the importance of data and trials and randomized studies, but are thoughtful enough to resist their seductions. What doctors really hunt is bias."

Mukherjee, Siddhartha (2015-10-13). The Laws of Medicine: Field Notes from an Uncertain Science (TED Books) (Kindle Locations 612-620). Simon & Schuster/ TED. Kindle Edition.
"[H]uman decision making, and, particularly, decision making in the face of uncertain, inaccurate, and imperfect information, remains absolutely vital to the life of medicine. There is no way around it. “The [political] revolution will not be tweeted,” wrote Malcolm Gladwell. Well, the medical revolution will not be algorithmized." [Mukherjee, op cit, Kindle Locations 664-666].
"The medical revolution will not be algorithmized."

A half-million physicians laboring under the still-contentious, workflow-obstructive Meaningful Use compliance requirements nod their head in unison at that.


A strong intuition is much more powerful than a weak test.

“Normals” teach us rules; “outliers” teach us laws.

For every perfect medical experiment, there is a perfect human bias.

Again, an excellent, rather quick read. I studied it closely in about a half-day.

"The still-contentious, workflow-obstructive Meaningful Use compliance requirements"

While this blog began in 2010 amid the outset of my REC tenure with the Meaningful Use initiative and necessarily had a core focus on Health IT and proximate interrelated subjects subjects such as workflow (including "process QI"), UX (including the gamut of "human factors"), ePHI privacy/security, and the continuing misnomer "interoperability," I have always ranged further afield into the broader (and also inextricably interrelated) issues that necessarily come to bear on clinical effectiveness, e.g., organizational cultural issues, clinical pedagogy (and "how doctors think"), the socioeconomic "upstream," the market (including intellectual property, and the "shards" of care delivery), "artificial intelligence," and the rapidly maturing applied "omics" field.

On health IT per se, it's always worth studying the excellent, voluminous work of Dr. Jerome Carter at EHR Science:
A Usability Conundrum: Whether it is EHRs or Hospital Gowns, One Size Never Fits All…

Building clinical care systems that intimately support clinical work has to begin with the acknowledgement that clinicians perform many tasks within the context of a patient encounter, and those tasks very in type, number, and sequence. Everyone knows this. So, one might ask, if this is common knowledge, why are there so many problems with EHR usability? The answer is very simple. EHR systems are designed to be one-size-fits-all.

One-size-fits-all (OSFA) is such a fundamental precept of EHR design that no one even questions it. Instead, there is a pursuit of every possible means of fixing EHR systems, while allowing them to remain OSFA. Why? Because it is a design assumption carried over from past software design/development limitations.   Achieving the highest possible level of usability requires dumping deeply-ingrained OSFA thinking.

How did OSFA become so entrenched in EHR designs? Here are the main reasons.

Poor choice of design metaphor
Paper charts are the inspiration for current EHR systems. Charts are OSFA. No clinician was allowed to customize the chart to fit his/her personal work habits or information needs. Every hospital or practice has strict rules about chart organization and use. There are legal rules that dictate how charts must be stored and what they must contain. There is an entire profession dedicated to charts. Charts are designed to be standardized information repositories; they are not designed to aid in care delivery. Paper charts are a means to an end, and I have never heard anyone gush over how wonderful a paper chart was or how it made their lives so much better. However, since paper charts are (were) a fact of life, one simply adapted to them, like it or not...
I'd certainly be interested in Dr. Mukherjee's take on HIT.

  1. Listen
  2. Look
  3. Palpate
  4. Empathize
Hmmm... how about "5. Sympathize"? Maybe that would be a stretch sometimes.

None of that is original with me, and, of course, I am no clinician. But, these are core takeaways from my long and deep study here, and they certainly cohere with "The Laws of Medicine." Some dot-connecting will ensue shortly.
I recall an interesting conversation early on during my REC tenure. Keith Parker, my nominal "boss" (who I'd interviewed and helped hire during my 2nd stint with HealthInsight during the DOQ-IT era in 2005) is a retired Special Forces medic. We were talking "SOAP" stuff one day in his office, and he started in on me, sizing me up (I'd not been feeling well), walking me through his take on the mostly "Subjective" component of the "Assessment" -- his reflexive process of in-the-exigent-field-circumstances evaluation: "Listen, Look, Palpate, Empathize." Keith was/is as clinically adept in that regard as any physician I've ever met. Probably goes in large measure to his high-stakes military background and experience.
Again, it's not just about EHR "structured data." It's also about "the spaces that live between facts."


apropos of the topic, from THCB:
First, we Devalued Doctors; Now, Technology Struggles to Replace Them

...I realized there was something that seemed a little sad about the idea of developing extensive market analytics and fancy digital engagement tools to simulate what the best doctors have done for years – deeply know their patients and suggest treatments informed by this understanding.

Instead, it seems, we’ve slashed the time physicians get to spend with patients, protocolized and algorithmitized almost every moment of this brief encounter, and insisted the balance of time is used for point-and-click data entry and perhaps a rushed dictation.  We’ve industrialized the physician-doctor encounter – the process and the paperwork — but eviscerated the human relationship; it’s value, unable to translate easily to an excel spreadsheet, was discounted and dismissed...

ERRATUM: px transcript

What if, in addition to / in lieu of Dragon-enabled transcription along with standard EHR structured data keyboard and mouse-click input, we had audio and/or video recordings of HIPAA-protected clinical encounters?

My new Harper's came in the mail today.

Shit Talkers

From an audio recording entered as evidence in a 2014 lawsuit filed by a man identified as D.B., who claims that he inadvertently recorded his colonoscopy on his cell phone. Tiffany Ingham and Soloman Shah were the anesthesiologist and the gastroenterologist who performed the procedure. In June, a jury awarded D.B. $500,000 in damages.

TIFFANY INGHAM: All right. This medicine is going to start making you feel a little drowsy and relaxed.
D.B.: Pretty much instantly?
INGHAM: Quickly, yeah. Once Dr. Shah comes in, I’ll make you go all the way to sleep.
D.B.: What’s the medication?
INGHAM: The one that I just gave you? It’s called midazolam. There you go.
D.B.: I used to want to be a surgeon in high school.
INGHAM: What kind of work do you do now?
D.B.: I’m an attorney.
INGHAM: That’s kind of a big switch.
D.B.: I couldn’t take the sight of blood.
INGHAM: Well, you probably made a good career choice there.
D.B.: Yeah. There’s little chance that I will remember this, right? Maybe this part.
INGHAM: It can make your memory a little fuzzy, so you may not recall too much of it.
D.B.: Am I going to remember the procedure?
INGHAM: No, you’ll be unconscious.
[SOLOMAN SHAH enters.]
D.B.: Hey, is that Dr. Shah? How are you, my friend?
SOLOMAN SHAH: Good, good. All right, we’re gonna get started shortly.
[D.B. goes under.]
INGHAM: I don’t think this prep’s going to be so hot. That’s my impression of this gentleman. Is that a clog? Did he clog it up with his crappy prep?
ASSISTANT: Do you need a towel, Dr. Ingham?
SHAH: You’re going to need more than a towel.
INGHAM: On his pre-op form, he has, as his only medication, gabapentin. And I’m like, “Why are you taking gabapentin?” “Well, I went to a dermatologist. I have this irritation on my penis.”
SHAH: Right. That’s a little too much information.
INGHAM: I said, “I don’t think that you should go back to that dermatologist. If you’re having issues in that area, you should see your urologist.”
SHAH: I told him that already! He’s seen two urologists. He told me. I said, “You need to follow up with your urologist.”
INGHAM: He’s crazy.
SHAH: And he keeps mentioning it like it’s the first time he’s ever talked to anyone about it. I’m like, “Sir, you’ve seen two urologists. What are you telling me for?”
INGHAM: I don’t know. Most men I know, if they have the problem with that area of the body, they are in a doctor’s office the next day.
SHAH: And also, don’t mention it to me. I’m not interested.
INGHAM: Exactly. And then he went on and on about it.
SHAH: One nice thing about being a specialist is I don’t deal with that crap.
INGHAM: One nice thing about being an anesthesiologist is making people shut the hell up.
SHAH: That’s why I didn’t become a fricking urologist. Because I didn’t want to put wires in people’s penises all day.
INGHAM: I would make bank as a urologist because (a) I’m a pretty girl, so all the Viagra-seeking dudes would want to see me, and (b) all the ladies whose vaginas have fallen out after their babies would want to come see me, too.
SHAH: I’m going to get a chair. Because it’s going to take me a couple hours to suction all this out of him.
INGHAM: Big shocker. I just knew it. As soon as he said, “No, it’s not clear,” I’m like, “Well, is there solid material?” “Well, yes, there is, it’s dark brown.”
SHAH: Let me guess, does he work for the Justice Department or CIA?
INGHAM: He’s a lawyer, for somebody.
SHAH: The most kooky people that I know work for the Justice Department or the CIA. Or they’re lawyers.
INGHAM: Amazing. I mean, I have anxiety and nervousness, but he’s over the top. You gotta calm down. You’re gonna have a heart attack at forty.
SHAH: Why is it always the last colon of the day that’s like this? Doesn’t he know that I want to go to lunch? His frickin’ colon is slow as molasses.
INGHAM: Put some gloves on. That’s a soupy-doupy-poopy prep.
ASSISTANT: Not to mention a penile rash.
INGHAM: Just make sure you’re gowned up. Don’t want you to accidentally rub against it and get some syphilis or something.
SHAH: That would be bad. That would be real bad.
INGHAM: If you didn’t rub up against the penis, then you should be all right.
ASSISTANT: I did, I did.
SHAH: Well, as long as it’s not Ebola, you’re okay.
INGHAM: It’s penis Ebola. The gabapentin will fix it. . . . Sir, the word I want to use to describe you is not appropriate for this venue.
SHAH: So, Vicky, so you’re going to go talk to this patient afterward, right?
ASSISTANT: [Laughs] Suuure.
INGHAM: You’re going to have to have a timer go off or, like, a fake page. “Dr. Shah, you’re needed urgently in the office.” I’ve done the fake page before. . . . Who will be the lucky nurse who gets him? It’s lunchtime. It could be anyone. Round and round we go. Wheel of annoying patients. Where will it land? Nobody knows. . . . I feel bad. I shouldn’t be so mean. . . . I’m going to mark “hemorrhoids” even though we don’t see them and probably won’t. I’m just going to take a shot in the dark. And I’m writing it “H.O.R.” in capital letters.
Lordy. Now a matter of public record. How's that for "mHealth"?


This book is about information, imperfection, uncertainty, and the future of medicine. When I began medical school in the fall of 1995, the curriculum seemed perfectly congruent to the requirements of the discipline: I studied cell biology, anatomy, physiology, pathology, and pharmacology. By the end of the four years, I could list the five branches of the facial nerve, the chemical reactions that metabolize proteins in cells, and parts of the human body that I did not even know I possessed. I felt poised to begin practicing real medicine. But as I advanced through my training— becoming an intern, then a resident, a fellow in oncology, and then an attending doctor treating patients with cancer— I found that a crucial piece of my education was missing. Yes, I needed the principles of cell biology to understand why, say, a platelet transfusion lasts only two weeks in most patients (platelets live in the body for only about two weeks). Anatomy helped me recall why a man had woken up from a surgical procedure with his entire lower body paralyzed (an unusual artery that supplies the lower spinal cord had become blocked by a clot, resulting in a “stroke” of the spinal cord, not the brain). An equation from pharmacology reminded me why one antibiotic was dosed four times a day while its close molecular cousin was given only once a day (the two chemicals decay at different rates in the body). 

But all this information could, I soon realized, be looked up in a book or found by a single click on the Web. The information that was missing was what to do with information— especially when the data was imperfect, incomplete, or uncertain. Was it appropriate to treat a forty-year-old woman with acute leukemia with an aggressive bone-marrow transplant if her health was declining rapidly? At first glance, textbooks and published clinical trials gave you an answer. In this instance standard wisdom held that patients with declining health and performance should not be given a transplant. But what if that answer did not apply to this woman, with this history, in this particular crisis? What if the leukemia itself was causing the rapid decline? If she asked about her prognosis, I could certainly quote a survival rate pulled from a trial— but what if she was an outlier? 

My medical education had taught me plenty of facts, but little about the spaces that live between facts. I could write a thesis on the physiology of vision. But I had no way to look through the fabric of confabulation spun by a man with severe lung disease who was prescribed “home oxygen,” but gave a false address out of embarrassment because he had no “home.” (The next morning, I got an irate phone call from the company that had attempted delivery of three canisters— to a Boston storefront that sold auto parts.) 

I had never expected medicine to be such a lawless, uncertain world. I wondered if the compulsive naming of parts, diseases, and chemical reactions— frenulum, otitis, glycolysis— was a mechanism invented by doctors to defend themselves against a largely unknowable sphere of knowledge. The profusion of facts obscured a deeper and more significant problem: the reconciliation between knowledge (certain, fixed, perfect, concrete) and clinical wisdom (uncertain, fluid, imperfect, abstract). 

This book began as a means for me to discover tools that might guide me through a reconciliation between these two spheres of knowledge. The “laws of medicine,” as I describe them in this book, are really laws of uncertainty, imprecision, and incompleteness. They apply equally to all disciplines of knowledge where these forces come into play. They are laws of imperfection. 
The stories in this book are of real people and cases, but I have changed names and identities and altered some contexts and diagnoses. The conversations were not recorded verbatim, but have been paraphrased from my memory. Some situations, tests, and trials have also been changed to maintain the anonymity of patients and doctors. [The Laws of Medicine, Kindle Locations 56-88].
Sciences have laws— statements of truth based on repeated experimental observations that describe some universal or generalizable attributes of nature. Physics is replete with such laws. Some are powerful and general, such as the law of gravitation, which describes the force of attraction between two bodies with mass anywhere in the universe. Others apply to specific conditions, such as Ohm’s law, which only holds true for certain kinds of electrical circuits. In every case, however, a law distills a relationship between observable phenomena that remains true across multiple circumstances and multiple conditions. Laws are rules that nature must live by. 

There are fewer laws in chemistry. Biology is the most lawless of the three basic sciences: there are few rules to begin with, and even fewer rules that are universal. Living creatures must, of course, obey the fundamental rules of physics and chemistry, but life often exists on the margins and in the interstices of these laws, bending them to their near-breaking limit. Even the elephant cannot violate the laws of thermodynamics— although its trunk, surely, must rank as one of the most peculiar means to move matter using energy. 

But does the “youngest science” have laws? It seems like an odd preoccupation now, but I spent much of my medical residency seeking the laws of medicine. The criteria were simple: a “law” had to distill some universal guiding principle of medicine into a statement of truth. The law could not be borrowed from biology or chemistry; it had to be specific to the practice of medicine. In 1978, in a mordantly acerbic book called The House of God, the writer Samuel Shem had proposed “thirteen laws of medicine” (an example: “Law 12: if the radiology resident and the intern both see a lesion on an X-ray, then the lesion cannot be there”). But the laws that I was seeking were not attempts to skewer medical culture or highlight its perversities à la Shem; I was genuinely interested in rules, or principles, that applied to the practice of medicine at large. 

Of course, these would not be laws like those of physics or chemistry. If medicine is a science at all, it is a much softer science. There is gravity in medicine, although it cannot be captured by Newton’s equations. There is a half-life of grief, even if there is no instrument designed to measure it. The laws of medicine would not be described through equations, constants, or numbers. My search for the laws was not an attempt to codify or reduce the discipline into grand universals. Rather, I imagined them as guiding rules that a young doctor might teach himself as he navigates a profession that seems, at first glance, overwhelmingly unnavigable. The project began lightly— but it eventually produced some of the most serious thinking that I have ever done around the basic tenets of my discipline. [ibid, Kindle Locations 182-202]
While grounded in scientific thinking (soon to likely be amplified in truly "transformative" measure by the application of the "omics"), an effective "art of medicine" goes materially to adroit tactical heuristic analytic reasoning grounded in empathy. ("Listen, Look, Palpate, Empathize"). Creative, synergistic leaps of expert imagination. The "care" part of "health care." The meditative "slow medicine" of "God's Hotel."

The "care" part of "health care."

I guess it's worth noting that neurologist Antonio Damasio, in "Descarte's Error," points out that "reason versus emotion" is a false dichotomy. One has to care about reasoning.

More to come...

Sunday, November 15, 2015

Shards writ large

"Shards," indeed.

Below, one of my 2004 shots of the Eiffel Tower, at dusk.

We were in Paris for the finish of le Tour that year, joyfully shlepping those very arrondissements proximate to the attacks. Below, a couple of blocks from our hotel.

If this nihilist tragedy isn't a "population health" catastrophe (along with other recent equally gruesome atrocities that weren't accorded 24/7 worldwide press coverage), I don't know what qualifies. Acute care medical services certainly got their workout this weekend. And, given the large number of people still hospitalized with serious to critical wounds and injuries, the frantic medical work will continue apace.

Below, a map of the current Middle Eastern states' diaspora.

The heated social media and news site commentary rhetoric across the weekend has been rife with xenophobic, genocidal "bomb-them-all-back-to-their-beloved-7th-Century" exhortations. Eliminationist allusions to the entire Middle East turned into a "glass parking lot" fly off the trolls' keyboards with abandon.

We're talking about 23% of humanity, the proportion of world population identifying as "Muslim" (~1.7 of 7.3 billion people on earth).

The politicians are elbowing each other aside to be seen as the "toughest." Ted Cruz advocates ramping up U.S. airstrikes and quit worrying about civilian casualties. Donald Trump advocates forcibly shutting down mosques in the U.S. Jeb Bush says only "Christian" refugees should be admitted into  the U.S. The governor of Alabama declares that no Syrian refugees will be permitted in his state.

Update: dozens of other states have chimed in to cite the same bans.

Ben Carson, in addition to calling for legislation barring Syrian refugees, advocates resuming full-scale U.S. military operations in Iraq (to demonstrate "leadership") and going to war with Russia if necessary over a U.S.-imposed no-fly zone over Syria.

And so it goes.


More to come...

Wednesday, November 11, 2015

Shards of health care -- the Nuke the Donald update

"Shards of health care" update. Yesterday (Nov. 10th) I finished my two months of prostate cancer Calypso IMRT tx, 45 daily M-F sessions in all.

I jokingly named my tumor 'The Donald." Now that's he's been "nuked," perhaps I should henceforth refer to him as "Ben."

Staff gave me a "Certificate of Completion" yesterday after I finished tx.

I could not recommend this oncology facility more highly. They exemplify the phrase "patient-centered, team-base care." My prognosis is excellent. I've seen a lot of misery every day during my treks to the clinic. My cancer is relatively trivial in comparison, and the outright "cure" literature for my circumstance is in the "98-99%" range. My radiation oncologist said unequivocally, "you're not gonna die from prostate cancer." I turn 70 in February, so it's likely gonna be something else that gets me. My consulting radiation oncologist at Stanford had told me "you've got another 20 years." Well, my late dad died at 92, my mom, just shy of 90 (and her sister, my aunt Edna, recently passed at 91), so, yeah, perhaps. I just have to do what I can to make them 20 good years (which they were not for my parents).

Going forward post-Calypso tx, I will simply have PSA tests every three months for a couple of years, starting in mid December, and an annual DRE.

Not much in the way of "shards" news to report, given that I've maxed out on my BCBS calendar year 2015 OOP. But, we've been advised to lose the Blue Cross/HSA coverage and go straight Medicare with a Part-B supp, so, we have to quickly look into all of that and enroll. For one thing, it turns out that my wife's company (Gilbane, where we get our coverage) is "self-insuring" (we'd not known that), with the hapless, obstructive BCBS/RI serving merely as the Plan Administrator. Gilbane's "loss experience" this year has been quite high, and employees have been notified of major pending premium increases for 2016. Between our premiums and my OOP, we're out more than $10k this year.

We'll see. Stay tuned.

Time to get caught up on health IT developments and the gamut of health policy stuff I'm behind on. I'm really tired, which was to be expected. I anticipate that that will wane across the next few weeks.

Over at Science Based Medicine, a new book came to my attention yesterday. Bought it and have just begun reading.

This Book Won’t Cure Your Cancer, But It Will Help You Think More Clearly About It

Gideon Burrows has an inoperable brain cancer that is slow growing but is inevitably going to kill him. He has written a remarkable book about his experience, This Book Won’t Cure Your Cancer. A professional wordsmith, he is able to describe his experience of illness so vividly that the reader enters into his life, feels what he feels, and shares his suspense about what the next scan or doctor’s visit will reveal. Along with him, we suffer through the panic and fear, the chaos, the agonies of delays and uncertainty, the unpleasant hospital environment, and specialists with poor bedside manners. We follow him through difficult decisions about how to share the bad news with friends, relatives, and his young children; and we understand why this engenders guilt feelings. The story is as engaging as a detective story; we can hardly wait to see what the next scan will show and how the story of his illness will play out. It puts a human face on the cancer experience, and it would be valuable for that alone, but it is much more. The gradually unfolding episodes of his personal story are interwoven with what amounts to a primer on how to think critically about science-based medicine vs. alternative treatments. I can’t recommend this book highly enough.

Untrustworthy information

When people are diagnosed with cancer, they are vulnerable and desperate. They look for information and are likely to find cookbooks, miracle stories, alternative medicine, and “forbidden cancer cures.” Their friends bombard them with advice. Most of those sources “offer hope to people when they need it most, but have earned no right to do so..."
That all rings so true to me. Recall my "One in Three" essay.
One in three
The statistics (of which I had been blissfully unaware despite having recently worked as a Medicare analyst) reveal that one in three of us will at some point come to deal with cancer, either as a patient, or as an immediate family member of one. Cancer is a disease of such subliminal dread as to induce an ongoing denial while we are healthy and not having direct contact with a cancer sufferer. We'd just as soon not think about it, thank you.

But when cancer does appear, the impact is frequently devastating for all involved. For too many, a diagnosis of cancer comes late in the progression of the disease, leaving the afflicted with limited and problematic therapeutic options and their loved ones with a feeling of being endlessly "behind the curve" also awash in often conflicting information and emotions, groping desperately for the means of survival and healing. Such has indeed been our case for the past year and a half. I have come to learn more than I ever wanted to know about this insidious disease that so frustrates the finest minds in medical science. It is a frustration that fuels a thriving and fervent -- but often naive and irresponsible --"alternative healing" industry whose wildly varying methods and claims must also be individually evaluated in the quest for the tools of a loved one's survival and healing...
I also finished this excellent book, and will be reporting on it ASAP.

"Two leaders in the field of genetics—a bioethicist-health lawyer and an obstetrician-gynecologist geneticist—answer the most pressing questions about the application of new genetics to our universal medicine and what personalized medicine means for individual healthcare.

Breakthroughs in genetic research are changing modern medicine and pharmaceuticals. But what are these changes and how do they affect our individual care? Genomic Messages examines these groundbreaking changes and the questions they raise: What kind of specific medical innovation do we have to look forward to now and tomorrow? How will this “flood” of genetic messages change our lives, our interaction with our physicians and our healthcare system?

Groundbreaking and provocative, Genomic Messages fuses the often conflicting worlds of medicine and law to provide information and insight that will impact the health choices of every one of us, from how medicine is practiced to concepts of privacy, confidentiality, and informed consent. Ultimately, it reveals how genetic information is changing how we think about ourselves, our health, and our future."
apropos of the topic, I read this in my New Yorker yesterday.

The Gene Hackers
A powerful new technology enables us to manipulate our DNA more easily than ever before.


At thirty-four, Feng Zhang is the youngest member of the core faculty at the Broad Institute of Harvard and M.I.T. He is also among the most accomplished. In 1999, while still a high-school student, in Des Moines, Zhang found a structural protein capable of preventing retroviruses like H.I.V. from infecting human cells. The project earned him third place in the Intel Science Talent Search, and he applied the fifty thousand dollars in prize money toward tuition at Harvard, where he studied chemistry and physics. By the time he received his doctorate, from Stanford, in 2009, he had shifted gears, helping to create optogenetics, a powerful new discipline that enables scientists to use light to study the behavior of individual neurons.

Zhang decided to become a biological engineer, forging tools to repair the broken genes that are responsible for many of humanity’s most intractable afflictions. The following year, he returned to Harvard, as a member of the Society of Fellows, and became the first scientist to use a modular set of proteins, called TALEs, to control the genes of a mammal. “Imagine being able to manipulate a specific region of DNA . . . almost as easily as correcting a typo,” one molecular biologist wrote, referring to TALEs, which stands for transcription activator-like effectors. He concluded that although such an advance “will probably never happen,” the new technology was as close as scientists might get.

Having already helped assemble two critical constituents of the genetic toolbox used in thousands of labs throughout the world, Zhang was invited, at the age of twenty-nine, to create his own research team at the Broad. One day soon after his arrival, he attended a meeting during which one of his colleagues mentioned that he had encountered a curious region of DNA in some bacteria he had been studying. He referred to it as a CRISPR sequence.

“I had never heard that word,” Zhang told me recently as we sat in his office, which looks out across the Charles River and Beacon Hill. Zhang has a perfectly round face, its shape accentuated by rectangular wire-rimmed glasses and a bowl cut. “So I went to Google just to see what was there,” he said. Zhang read every paper he could; five years later, he still seemed surprised by what he found. CRISPR, he learned, was a strange cluster of DNA sequences that could recognize invading viruses, deploy a special enzyme to chop them into pieces, and use the viral shards that remained to form a rudimentary immune system. The sequences, identical strings of nucleotides that could be read the same way backward and forward, looked like Morse code, a series of dashes punctuated by an occasional dot. The system had an awkward name—clustered regularly interspaced short palindromic repeats—but a memorable acronym.

CRISPR has two components. The first is essentially a cellular scalpel that cuts DNA. The other consists of RNA, the molecule most often used to transmit biological information throughout the genome. It serves as a guide, leading the scalpel on a search past thousands of genes until it finds and fixes itself to the precise string of nucleotides it needs to cut. It has been clear at least since Louis Pasteur did some of his earliest experiments into the germ theory of disease, in the nineteenth century, that the immune systems of humans and other vertebrates are capable of adapting to new threats. But few scientists had considered the possibility that single bacterial cells could defend themselves in the same way. The day after Zhang heard about CRISPR, he flew to Florida for a genetics conference. Rather than attend the meetings, however, he stayed in his hotel room and kept Googling. “I just sat there reading every paper on CRISPR I could find,” he said. “The more I read, the harder it was to contain my excitement.”

It didn’t take Zhang or other scientists long to realize that, if nature could turn these molecules into the genetic equivalent of a global positioning system, so could we. Researchers soon learned how to create synthetic versions of the RNA guides and program them to deliver their cargo to virtually any cell. Once the enzyme locks onto the matching DNA sequence, it can cut and paste nucleotides with the precision we have come to expect from the search-and-replace function of a word processor. “This was a finding of mind-boggling importance,” Zhang told me. “And it set off a cascade of experiments that have transformed genetic research...”
Very interesting piece. Read all of it.

Some of my prior posts on the myriad "Omics" issues are here, here, and here.

No more 30 oz of daily Calypso prep water intake. What a relief.


My reaction to a THCB post entitled "Interoperability: Faster Than We Think – An Interview with Ed Park"
“The most useful thing that meaningful use did from an interop standpoint was to standardize all the data dictionaries.”

That is simply not true. Standard nomenclatures/vocabularies are not the same as “standard data dictionaries,” which come at the EHR architectural RDBMS metadata level. Data dictionaries continue to differ from one vendor to another. Because ONC never bothered to study the extent of the differences — by, say, requiring the submission of the database dictionaries as a condition of the MU certification application — we simply still don’t know the magnitude of the variability.

The other thing Mr. Park leaves out of the IEEE interop definition clause “without special effort on the part of the customer.” By “defining interoperability down,” we really could simply declare victory and go home, given that virtually all mainstream EHRs have report-writing functionality that can burp out PDF and XML documents to send as secure attachments — i.e., “data exchange,” materially differing little from faxes.


“…the next advances in interoperability from a technical perspective will not and cannot be legislated. One of the analogies for interoperability, which I find to be a useful starting point, is the thread to a light socket. So everyone got together and decided that there’s one way to build a light socket and everyone conforms to that. Or that there’s one thread to a fire hydrant. That’s a famous example. “If everyone just standardizes the way that hoses connect to fire hydrants then we could have saved that city.” That’s a standard way of looking at interop…”

“Will not be legislated.” Yeah, I buy that. But not the “cannot be” assertion; that’s a choice we’ve made. And, just to be clear, I’m not arguing that the feds would have to derive and publish a data dictionary standard themselves. But, WHERE is the Consensus Standards-Bodies “convening” leadership here? I see a lot of endless talk and slick 4-color 10 Year Plan report-writing, but little else.

We missed the boat on that window of opportunity, I suppose. And, to be sure, there are myriad functional “industry consensus standards” out there across the breadth of industries and technologies. And, to riff on your “socket” analogy, if ONC promulgated an “interop standard” for household electricity, today you’d likely go to Lowe’s to choose from more than 2,000 sizes and shapes of “Stage 2 Certified 120 VAC 15 amp” wall sockets.

Maybe APIs will be the HIT interop panacea. Maybe. I certainly hope so. But citing social media and other online consumer-facing interfaces obscures the reality that the typical incumbent ONC certified ambulatory EHR houses about 4,000 dictionary-defined variables within the schema, not a dozen or two.

More to come...

Thursday, November 5, 2015

Google Ventures on investing in the healthcare space

Interesting interview.

I have no idea why the the embedded iFrame came out so small here. There are no end-user adjustable parameters in the underlying iFrame html code. 

Link to the original Bloomberg article here. Alternatively, you can also click the little 4-arrows "expand-to-full-screen" icon in the lower right corner of the video (hover over that area).

Pretty harsh assessment of Theranos commences at 03:30. Recall my prior coverage of the Theranos controversy here, here, and here.

Lots of other stuff to report on: MU, Interop, ICD-10, AHRQ, Theranos (the gift that keeps giving), more Omics stuff, etc. Maybe after I get back from RadOnco. I'm getting short. Only 4 Calypso IMRT tx sessions left out of the 45. I finish next Tuesday, the 10th. I'm a bit behind. Took some time out to go the Minnesota for my Grandson's final home football game at St. Olaf (he's a senior).


From The Neurologica Blog:
The Ben Carson Contradiction

By all accounts, Ben Carson is a brilliant pediatric neurosurgeon. He was the Director of Pediatric Neurosurgery at Johns Hopkins Hospital until he retired, and received the Presidential Medal of Freedom for his surgical achievements...
Carson is also evidence that people who hold extreme or anti-scientific beliefs are not necessarily stupid. Belief in pseudoscience and the paranormal is not about general intelligence. It is about the human tendency to form and maintain beliefs for a variety of social, cultural, and personal reasons...
What we can conclude about Carson is that he is not systematically following a valid intellectual process in forming his beliefs. He has no problem dismissing the opinion of experts and scientists, and substituting his own poorly-informed hunches. Obviously this is a disturbing trait in someone running for high office.
So much for the "transfer of training" argument. Dr. Carson is a one-man refutation.

More to come...

Thursday, October 29, 2015

"Interoperability? We don't need no steenkin' definition."

That's what I would say. But, consider this, from THCB:
Defining Interoperability: An Interview with Grahame Grieve
by Leonard Kish

Grahame Grieve is a long-time leader within HL7 and one of the key drivers behind FHIR. He chats with Leonard Kish about what’s been happening and what’s ahead for interoperability...

LK: There’s a lot of talk in congress about the lack of interoperability and everyone probably has their own definition. Do you have a working definition of interoperability or is there a good definition you like for interoperability?

G: The IEEE definition to get data from one place to another and use it correctly is pretty widely used.  I guess when you’re living and breathing interoperability you’re kind of beyond asking about definitions...

It’s actually relatively easy to move data around. What you’ve got to do is consider the costs of moving it, the fragility of the solution, and whether the solution meets the user’s needs around appropriateness, availability, security, and consent.  Given the complexity of healthcare and business policy, it’s pretty hard to get a handle on those things. One thing that is key is that interoperability of data is neither here nor there in the end because if providers continue with their current work practices, the availability of data is basically irrelevant, because they treat themselves as an island. They don’t know how depend on each other...

I think of standards as a precondition. If they can exchange data correctly then they can start asking themselves whether they want to.  Whereas if they can’t exchange data correctly and usefully then they don’t even get to ask the questions.  So standards is just a precondition to asking “How do we have patient focused care without having to build specific institutions around a particular process?”...

LK: Can you tell us a little bit about how SMART On FHIR enhances FHIR and are there going to be other things on FHIR as we go forward with different enabling bodies working together?

G: FHIR is a base API for all sorts of usages.  One of the most common usages is going to be exchanging healthcare information between EHR’s and within an EHR in its internal extensibility environment.  And that’s where SMART On FHIR fits in and provides a really neat solution for what EHR’s need to do.  So personally I think most data exchange using FHIR will use SMART on FHIR because the driving need is in the EHR space.  And I think Smart On FHIR is a great extension to FHIR around that. I think there’ll be other extensions that are more in the corporate backbone space and more knowledge-based service, things that are not so user specific. Those aren’t formed yet and SMART On FHIR is the one we’re throwing all our weight behind because it meets the immediate needs...
"when you’re living and breathing interoperability you’re kind of beyond asking about definitions."

I must have missed that day in science class. BTW: I've had my say about APIs, and HL7/FHIR, e.g., here, here, and here.

Let's recall the IEEE definition:
interoperability: Ability of a system or a product to work with other systems or products without special effort on the part of the customer. Interoperability is made possible by the implementation of standards.
"without special effort on the part of the customer."

It looks to me like we're going to "define interoperability down" by eliminating (at least implicitly) that clause of the IEEE definition.

Look at ONC's take:
Defining the Difference between Health Information Exchange and Interoperability
Because exchange is a prerequisite for interoperability, here at ONC we’ve focused a lot of attention on it...

But we must always remember that exchange is only part of the puzzle. If I send an email from one computer to another computer, I have exchanged information between those two systems. But if I write my message in French, (and you can only speak English), there is no way for you to automatically use the information that has been exchanged without risking losing something in translation...I may have exchanged information, but I won’t be able to seamlessly use the information in the new system to alert the provider automatically of a new drug allergy, for example. So to get to health information interoperability, we need more than just transport standards:  we must also use standards for vocabularies and terminologies (to help standardize the meaning of the words that we use), standards for structure (so computers know how to break a message into the appropriate information chunks), and potentially other kinds of standards...
I had run at the "French-to-English" thing back during November 2013 while covering the NYeC Conference in NYC.

I have some lingering Interop questions. One goes to the humorous phrase proffered by one of the presenters:

"Smiling Almighty Jesus."

The point was miscommunication resulting from information garble over time between people. The above refers to a dx of "Spinal meningitis," which the elderly fictional patient in the slide got wrong. As it goes to HIE, this aligns with my chronic rant about a data dictionary standard. As I have observed by way of analogy:
True interoperability requires a comprehensive data dictionary standard. Without it, information can become “garbled.” That is, altered during sequential transmissions. For example, what if you took these sentences and ran them through Google Translate from one language to another — say, [1] from English to Spanish, [2] then from Spanish to French, [3] then from French to German, [4] then from German to Greek, [5] then from Greek to Swedish, [6] then from Swedish to Portuguese, and [7] then back to English?
  1. Verdadero interoperabilidad requiere un amplio diccionario de datos estándar. Sin ella, la información puede llegar a ser "confusa". Esto es, alterado durante las transmisiones secuenciales. Por ejemplo, ¿qué pasa si usted tomó estas frases y las pasó por Google traducir de un idioma a otro - por ejemplo, del Inglés al Español, a continuación, del español al francés, después del francés al alemán, después del alemán al griego, luego del griego al sueco, luego del sueco al portugués, y luego de nuevo a Inglés?
  2. Véritable interopérabilité requiert une vaste série de dictionnaire de données. Sans elle, l'information peut devenir "confus". C'est, séquentielle modifié pendant la transmission. Par exemple, si vous avez pris ces mots et a traversé Google traduire d'une langue à l'autre - par exemple, de l'anglais à l'espagnol, puis l'espagnol vers le français, puis du français en allemand, puis de l'allemand vers grec , puis du grec au Suédois Suédois Portugais après, puis revenir à l’anglais?
  3. Echte Interoperabilität erfordert eine breite Palette von Data-Dictionary. Ohne sie können die Informationen zu "verwirrt". Dies wird sequenziell während der Übertragung verändert. Zum Beispiel, wenn Sie mir das Wort und ging durch Google übersetzen von einer Sprache in die andere - zum Beispiel aus dem Englischen ins Spanische und Spanisch in Französisch und von Französisch ins Deutsche und Deutsch auf Griechisch, dann aus dem Griechischen ins Schwedisch Portugiesisch nach dann wieder auf Englisch?
  4. True διαλειτουργικότητα απαιτεί ένα ευρύ φάσμα του λεξικού δεδομένων. Χωρίς αυτά τα στοιχεία για να "σύγχυση". Αυτό είναι διαδοχικά αλλαχτούν κατά τη μεταφορά. Για παράδειγμα, αν η λέξη και μου περπάτησε μέσα από το Google μετάφραση από τη μία γλώσσα στην άλλη - για παράδειγμα, από τα αγγλικά στα ισπανικά και ισπανικά στα γαλλικά και από Γαλλικά σε Γερμανικά και Γερμανικά σε Ελληνικά, στη συνέχεια, από τα ελληνικά στα Σουηδικά Πορτογαλικά σε συνέχεια πίσω στα Αγγλικά;
  5. Verklig driftskompatibilitet kräver ett brett spektrum av data dictionary. Utan denna information till "förvirring." Detta successivt förändras under transporten. Till exempel, om ordet och promenerade mig genom Google översättning från ett språk till ett annat - till exempel från engelska till spanska och spanska till franska och från franska till tyska och tyska till grekiska, sedan från grekiska till Svenska Portugisiska in sedan tillbaka till engelska?
  6. Plena interoperabilidade exige uma ampla gama de dicionário de dados. Sem esta informação a "confusão". Isso mudou gradualmente em trânsito. Por exemplo, se a palavra e me atravessou tradução do Google a partir de uma língua para outra - por exemplo, de Inglês para Espanhol e Espanhol para Francês e de Francês para Alemão e Alemão para o grego, depois do grego para o Português Sueco em seguida, de volta para Inglês?
  7. Full interoperability requires a broad range of data dictionary. Without this information to "confusion." This gradually changed in transit. For example, if the word and I went through Google translation from one language to another - for example, from English to Spanish and Spanish to French and from French to German and German to Greek, then from Greek to Portuguese Swedish in then back to English?

Pull up Google Translate, try it yourself. Pick additional languages. The results can often be quite amusing.

Senate HELP Committee Chairman Lamar Alexander (R-TN) is running around with his hair on fire these days advocating a delay in implementing Meaningful Use Stage 3 -- the core of his gripe being the lack of progress on "interoperability."

Had we required "Type-O" EHR data at (or close on the heels of) the MU outset, this might by now be a relatively minor issue.

I reflect back a decade to when I first came to Health IT, during the "DOQ-IT" era. HIE/Interop were not even on the radar, but intra-clinic HIT "integration" vs "interfacing" was a hot topic, given that "Practice Management Systems" (PMS) were already fairly common -- Front Office/Back Office apps used for scheduling and patient demographics input and management and claims billing. Given that a lot of clinics had substantial sunk costs in their PMS software, a thriving coding industry arose via which to build and install PMS-to-EMR "mid-office interfaces," in lieu of expensively migrating to fully integrated Front/Mid/Back Office EHRs that are pretty much the norm nowadays (at least in the ambulatory settings). Interface deployments back then comprised a constant source of tech support firefighting.

One can only hope that history will not repeat itself on the interop front. I continue to have my concerns.

Speaking of MU Stage 3 news,
I'm incredibly disappointed we even have a Stage 3. It's just a mistake. It's just prolonging the program. We should have claimed victory, frankly after Stage 1, but clearly after Stage 2, and stopped the program. There's no real additional benefit.
- Former ONC Health IT Policy Committee member, Intermountain Healthcare CIO Marc Probst

The release of the Stage 3 Final Rule broke while I was down in Santa Clara covering Health 2.0 2015. All the "real" press dudes were buzzing about it. I didn't even bother looking into it. I'll get around to the PDF eventually, but, it's a relatively low priority.

More to come...

Sunday, October 25, 2015

Shards of health care, continued

I began recounting my own misadventures as a patient on June 19th here: 'The U.S. healthcare "system" in one word: "shards." The story continued on July 28th in "Healthcare shards update. More sand in the gears," followed by "Shards of health care update" on August 21st.

Since then, I've just been rocking along with my radiation oncology treatment in Pleasant Hill. I'm now 3/4ths done, scheduled to complete my Calypso IMRT tx on November 10th. Not much to report on the administrative/EoB/(non) coordination-of-care front of late.

Until late this week. Relatively minor things, but frustratingly head-scratching nonetheless.
But, first, backing up from that a few days. I went to Walgreens earlier in the week to pick up my two long-time maintenance meds refills. My co-pay came to "$0.00." I can only surmise that I've hit my BCBS/RI $4,600 max OOP for the year. I joked that "I'm going to go see every doctor in Contra Costa County between now and December 31st." Seriously, though, I've now found a new PCP, and will see him on November 19th, at which time I will see about getting full-panel bloodwork and UA done straight away (I will not be using Theranos).
Thursday a bill arrived from "John Muir Medical Imaging" (a 3rd party imaging vendor independent from Muir) from whom I'd not heard since they screwed up the billing on my July endo-rectal coil MRI, regarding which they'd sent me a bill for $2,925, asserting that my insurance claim had been denied. Turns out they'd used wrong physician order number to submit the initial claim. They then informed me they'd re-submit, and not to worry about it. "Just ignore the bill."

Fine. I never gave it another thought. Hadn't heard from them again until this week.

The new bill said "Past due amount, $9.60. Final notice. Failure to remit immediately will result in this being sent to a Collection Agency."


I went to their online payment site, entered my HSA account number, and immediately paid it. There was no "comment" field via which I could let them know what I thought of this.

I waited a while, then cycled back around to the login. "Amount due: $9.60."

I called their customer service number to inquire. "Yes, we see it in the system. It's showing as 'pending'."

Just to be sure, I explained that I'd had payment problems before using our HSA account because because [1] it's in my wife's name (different last name, and through her employer) and [2] the billing address is a P.O. box in Walnut Creek, not our Antioch street address. I also noted that "you people are now threatening me with Collections over $9.60. My wife and I have never had a Derog, our Bureaus are completely clean."

She assured me that they would not send me to Collections over $9.60.


I'll have to log in yet again to see that the payment cleared. I've recently remitted nearly a thousand dollars in OOP to my RadOnco facility. I'm not about to blow off $9.60 chump change. I have been fastidious in remitting my legit balances.

That was Friday morning. After my Calypso tx, I had my weekly meeting with my oncologist. We discussed the FloMax thing, and decided it was time to try it, to try and mitigate the up-every-two-hours-all-night urinary hassle resulting from being so baked by the tx.

He wrote me a scrip. I recall thinking "OK, uh, no e-Rx here, 'eh? Whatever."

They use MOSAIQ, an Oncology EHR system.  Interfaced to their Elekta RadOnco equipment. Below, my Elekta Calypso x-ray bug zapper.

The MOSAIQ EHR is ONC Certified, but, still, I got a paper scrip.

Which would shortly come back to bite me in the butt.

I showed up at Walgreens in Antioch at 12:45 pm and handed in the Rx. The clerk looked at it, entered it, and said "it will be ready at 2:15."

I showed up again at 3:05, just to make sure I'd given them enough time.

"I show that this prescription could not be processed. It was not dated." They indifferently refused my request that they call the doctor and resolve the situation right then. His number was right there on the scrip. They would "have to fax them for a response."

I posted my reaction a bit later on the Walgreens Facebook page (I've found that publicly rubbing vendors' noses in their BS on social media typically works better than going through their "customer service" web and phone channels).
I just got jerked around at your store in Antioch California (Hillcrest location). I'm going to take my Rx business henceforth to one of your competitors. I am under treatment for prostate cancer. Today my radiation oncologist wrote me a prescription for FloMax. I took it to the pharmacy, the clerk took it and told me it would be ready about 2:15 PM. I came back a little after 3 PM, and was told that the physician had not dated the prescription, so I could not pick it up. Ok, stuff happens. I replied "fine, his phone number is right on the prescription. Call him." I was told that they would have to fax a request over to the physician's office and wait to hear back. The last time I checked, this was the 21st-century, not the 20th. This is not acceptable customer service. They told me they "could not call him." That's crap. Make that "would not call him." I am in my seventh week of radiation treatment, and I don't feel like running around back-and-forth all day trying to get a simple prescription filled.

This little episode will also go on my blog, at, where I chronicle my misadventures in the healthcare system from time to time ("Healthcare Shards") during the course of my writing about health information technology issues.
In less than an hour, there was a response.
Hello Bobby, I am very sorry to hear of the trouble that you've experienced. I've documented your concerns and forwarded this information to management for review. If you'd like to receive a response, please Private Message your contact information. Thanks -Monica
To which I replied.
My contact information is quite public. My principal email is My home phone hard line is already in your system. My cell phone number is [xxx–xxx–xxxx]. It is now nearly 6 PM on Friday evening, I guess I will not be hearing from Walgreens in time to pick up this prescription tonight. I am not happy about this. I held off going with this prescription as long as I could, but now I feel like I need it. But, owing to the indifference of one of your employees, I will have to do without it for yet sometime to come. This issue could have been proactively resolved by a simple phone call when it became noted that the date was missing. A phone call would have taken less time than putting together and sending a fax and then waiting for and processing a reply.
To which they responded, also on Facebook:
Thanks for the information @ Bobby Gladd. I've updated your case with; your contact information and your feedback and asked for a response as soon as possible. - Belinda
Since then, crickets. No phone calls, nothing in my Walgreens portal in-box.

I suppose now I will be apprising my RadOnco people of this when I arrive at daily tx tomorrow, and will be asking for a new, properly dated scrip.

I will not be taking it to Walgreens. Moreover, after my initial visit with my new PCP next month, I'm gonna ask that my routine meds orders be re-written and routed elsewhere. There are both a Rite-Aid and CVS closer to the house anyway. This doc is on Epic, so I know he can do e-Rx.

But, wait! There's more!

Frustrated, I left Walgreens (where they were not offering flu shots) and headed over to CVS on Lone Tree Way, where I'd gotten a flu shot last year. Handed the pharmacy clerk my insurance cards.

"Well, Mr. Gladd, it seems that BCBS will pay for the vaccine, but not for the injection. So, effectively, it's not covered."

I'm not making that up.

"Can I just drink it?" I joked.

I paid the $54.99 retail. Had to have it. I'd wasted enough of my Friday chasing my tail, and was feeling very tired by that point. For one thing, I'm going to  Minnesota next weekend for my grandson's "Senior Day" final home football game at St. Olaf. Feeling pretty zapped these days from all the radiation. Whatever protection a flu shot might provide while sealed in a plane with a bunch of coughing and sneezing kids, I need it.

"Won't pay for the injection."


They were out of the flu nasal spray alternative (which would have been covered), so it was a shot or nothing.



Jus' for grins, I logged into my account on the Walgreens portal.

Okeee-dokeee... No phone call, to either my cell number or hard line. No email notification. Probably a weekend shift hand-off disconnect. I suppose if there's still time to get the Rx tonight, I will first need to call them to verify so I don't waste yet another 45 minutes or so and a couple bucks worth of gas.

Nope. "The pharmacy is now closed."

My wife's advice?


Everyone who has to engage the health care non-system as a patient has his/her tales of frustration (recall my citing of Steve Brill?), even a prominent physician like The Incidental Economist's Aaron Carroll, MD.
Trapped in the System: A Sick Doctor’s Story
September 23, 2015 at 8:00 am, Aaron Carroll

We spend a lot of time talking about various metrics of quality or access in the American health care system. The problem with many of them is that they rarely seem to capture the issues that people face in dealing with care. Although many metrics are improving, problems remain that still seem insurmountable...

lived in constant fear of not being near a bathroom. The half-hour commute to my job often necessitated a stop on the way to work because I feared I would lose control of my bowels. My wife could tell you many stories about how I made innovative use of my babies’ diapers in cases of emergencies.

But a number of years ago, after I found that drug after drug didn’t work, my gastroenterologist suggested an older immunosuppressant. I’m a doctor, and I recognized it as a drug often used to treat cancer. It carried with it some significant side effects, most notably a small chance of myelosuppression, in which your bone marrow shuts down and produces too few blood cells.

That horrified my wife. But she didn’t appreciate that this was, to me, a small price to pay for the opportunity not to be constantly worried about my proximity to a toilet. I weighed the benefits versus the harms. I decided to give it a go...

The medicine is old and it’s generic. It costs about $80 for three months even though I haven’t met my deductible. But this story isn’t about money. This is about the nightmare of how hard it is for me to get the drug.

Every three months, I run out of my medication. In order to get more, I need a new prescription. In order to get the prescription, I need to have lab testing to prove to my doctor that I don’t have anemia. This all sounds simple, and it’s the same process every three months. But it’s never the same, and it’s never easy.

Let’s start with the lab testing. At various times, my insurance plan (which is excellent, by the way) changes which laboratory facilities it will cover fully. Often, these are not labs that are housed in the huge health care system for which I work. I often have to go elsewhere to have my blood drawn. If I change facilities, I have to get a new prescription for the labs, since they can’t share with one another.

Further, even though my lab orders are good for a year — and I need to have them drawn basically forever — the labs recognize them for only six months. So sometimes I have to get in touch with my doctor and get a new lab order. Often, they send over the old order, because they think it’s good for a year, in which case I have to go back to them and ask for a newly written one, because the lab won’t recognize the really-still-valid old one. Worse, they often just fax the order to the lab itself, thinking they’re helping me, so that I don’t realize they sent over an old one until I’m already there, and it’s too late.

After I get that sorted out, I have my blood drawn and analyzed. But because the laboratory and my doctor are in completely different health care systems, the lab results won’t show up in my doctor’s electronic database. I have to beg the lab to remember to fax over the results — using paper — which it often fails to do.

My next step is to check if the pharmacy I use is still under contract with my insurance plan. The medication I use needs to be ordered at a mail-order pharmacy, because my insurance won’t cover it at a local facility. My insurance plan has changed its mail-order pharmacy of choice more than once in the last few years, which necessitates that I inform my physician about the change.

I also have to open a new account with the new pharmacy and give it my payment information so that it can process everything once it has the order from the doctor. I do this before getting the prescription called in because I don’t want anything to get slowed down. This is a good time to explain that I can’t do much else ahead of time because the pharmacy and the insurance plan both know I have a three-month supply of the drug and won’t authorize me to get more too much in advance.

It’s at this point that I try to get in touch with my doctor, previously through a phone message, and more recently through an online site. If I’m lucky, which usually isn’t the case, the doctor will already have the lab results. If not, I have to go back to the lab and beg it again to fax over the results...
Read the entire article. See also his follow-on post "Answers to your questions about “Trapped in the System: A Sick Doctor’s Story”."

Dr. Carroll seems to be a good guy. I follow The Incidental Economist daily, and I really like his "Healthcare Triage" YouTube series.



Well, finally got my scrip. There's a prominent sign on the pharmacy wall adjacent the check-out area advising patients that all who get new prescriptions are now required by state law to engage in a "consult" with the pharmacist prior to leaving.

The cashier rang me up. $0.00 balance due. She handed me the Rx.

"Bye. Have a nice day."

Whatever. Not that I needed or wanted a "consult."

More to come...