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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.

SIDDARTHA'S THREE LAWS

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

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

LAW THREE
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…
by JEROME CARTER on SEPTEMBER 21, 2015


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.

BOBBYG'S FOUR LAWS OF SOAPe
  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."

UPDATE

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

...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...
'eh?

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.

[INDISCRETION]
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"?
__

BACK TO "THE LAWS OF MEDICINE"

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...

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