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Wednesday, December 17, 2014

We welcome Mad*Pow to the Peoples' Republic


I've encountered some of these folks at the many Health IT conferences I've attended throughout the past few years. Nice people, all very bright. They're heavy into UX, a sorely needed area of improvement in the health care space.
Whether we are helping insurers deliver better service to their members, creating experiences to guide patients through their navigation of the system, designing platforms for clinicians to collaborate around care and treatment, or partnering with  a cutting-edge healthcare technology company to bring their vision to life, we have a mission. Deliver real meaning, value, impact and outcomes through the experiences we create.

We understand the healthcare space, the entire space. Not just one facet, but the intricate and complex spectrum that encompasses government agencies, non-profits, insurance companies, hospitals, pharmacies, patients, caregivers, and doctors. We have designed groundbreaking solutions for each area and need present in this ecosystem and it is this experience that gives us the unique ability to see opportunities for engagement and improvement where others only see obstacles.

Our methods are routed in research, grounded in a collaborative approach, and guided by the true empathy we have developed through thousands of interviews with the real humans who sit at the center of this network...
We're now BART neighbors. Glad to see them expanding into California with full time boots on the ground. I wish them the best.

Been studying things related to Dr. Jerome Carter's latest EHR Science post "A Place for Everything Clinical Workflow…" Petri nets, 'eh? (pdf)

Not sure how much traction that is gonna get at the clinic level. There will have to be heavy and continuous clinical end-user understanding and collaboration.

MEANINGFUL USE CALENDAR YEAR 2014 CLOSES IN TWO WEEKS

Click to enlarge




The year-to-date numbers reveal significant atrophy. What will the new GOP Congress do to what remains, given that most of the MU money has been distributed, and all that largely remain are the reimbursement reduction sanctions?

A PERSONAL NOTE

My wife and I are off to College Park, Maryland early Friday for our son's graduation from UM with a degree in Operations Management. He's acquitted himself with distinction, all while working at Reagan as a ramp rat with JetBlue. Proud Papa. I'm equally happy that my daughter has just been named Executive Director of the Bay Area Stepping Stones Project.
___

More to come...

Friday, December 12, 2014

“The art of medicine consists of amusing the patient while nature cures the disease”


The post title quote above is attributed to Voltaire, 1778. I pick up where I left off  in my December 7th prior post "#Data4Health San Francisco listening session." I repeat:
Where do "data" ("do," not "does") fit into concepts such as the (controversial phrase) "art of medicine"? Are we subtly yet significantly more than the sum of our "structured data"?
John Haughom, MD, writes at THCB:
Physicians have always been in the information business. We have kept records of patient data regarding the vital signs, allergies, illnesses, injuries, medications, and treatments for the patients we serve. We seek knowledge from other physicians, whether that knowledge comes from the conclusions of experts from research published in a medical journal or the specialist down the hall. However, a physician will always benefit from additional good information such as the analysis of pooled data from our peers treating similar patients or from the patients themselves.

Over the next few years, vast new pools of data regarding the physiologic status, behaviors, environment, and genomes of patients will create amazing new possibilities for both patients and care providers. Data will change our understanding of health and disease and provide a rich new resource to improve clinical care and maximize patient health and well-being...
So, yeah, apropos of #Data4Health, etc, we're increasingly to be ever-more conveniently and inexpensively awash in all manner of health-related "data," "big" and small, coursing from far-flung watersheds comprised of "upstream" and "omics" tributaries, emanating from mobile devices, captured by and reposed in EHRs and PHRs and "the Cloud," nearly all of these data compactly "structured" -- numbers and alphanumeric codes ("lossy compression?") --  ever-more readily ("interoperably?") acquired, transcribed, viewed, edited, transmitted, appended, merged, synthesized, and evaluated for improved dx and px/tx.

So goes the theory.


"Lossy Compression?" Think of .jpeg images and .mp3 audio files, both of which have algorithmically removed (via "proximity redundancy" elimination) up to 90% of the raw binary data from source files while still yielding acceptable viewing and listening output for most ambient viewing/listening environments. It's call "lossy" because once the original bits are discarded, they are gone for good. The compression process is irreversible.

Reducing the clinical encounter to "structured data" comprised of numbers and informatics codes is essentially that -- "lossy compression." But, what gets lost? The narrative nuance originating in the open-ended textual "subjective" component of the SOAP (both as self-reported by the patient and the clinicians' subsequent "impressions")? Do such narrative "data" go to the root of "The Art of Medicine"? In the era of productivity treadmill "Fast Medicine," are such losses inevitable -- and negligible?

I have long been conflicted over the phrase "art of medicine." Is it a dodge proffered as a disavowal of responsibility in the wake adverse outcomes (particularly in light of the relatively loose coupling of cause and effect in clinical science)? Is it legitimately invoked in pushback over what clinicians decry as top-down mandated EBM / "cookbook medicine"? Are the imaginative ("creative?") heuristic leaps of the adroit physician an inescapably necessary and net value-adding component of the diagnostic and healing method? Is that what we mean by "The Art of Medicine?"

On the tx side of things, matters can be a bit more straightforward. One surgeon may have a rep and a record of being a hack and a butcher while another performs sensitive and precise work that can only be described as "exquisite," "artful."

Diagnostics are inescapably far murkier. Symptoms map overlappingly to myriad disorders, and the lexical narrative fluency of patients to describe them and clinicians to subsequently interpret them varies widely.

Get it right and you're a hero. Get it wrong and you may have a MedMal problem. In a world of reduced reimbursements, the relentless creep of encroaching daily time constraints, and ever-more complex technology and medical research findings (not to mention increasingly onerous regulations), simply navigating the numeric digits and the alphanumeric codes easily fills the clinicians' days.

Clay Jones, writing at Science Based Medicine: "Is There a Role for the Art of Medicine in Science-Based Practice?"
Over the decades, as evidence has accumulated, we have learned a vast array of patterns and associations that are beyond the ability of most if not all individual physicians to maintain a complete working knowledge of. Hence we must increasingly rely on specialists who focus on specific areas of medicine and, when possible, the incorporation of the available evidence into algorithms that fit most patients most of the time. It is hard to deny the improved accuracy and outcomes that this approach has led to.

Certainly there will always be exceptions where patients don’t present in such a way that an applicable protocol is easily chosen or even available, and diagnosis does elude us at times. And patients will not always respond to treatment as we expect them to. But we must be wary of experience-based practice that focuses too much on individualization. Without due caution, and awareness of the many biases and errors in perception that plague us all, the difference between expert-level subconscious pattern recognition and the bogus concept of medical intuition may not always be clear...


In my opinion, the phrase “art of medicine” needs to be retired or at least restricted in use. Aside from being nebulous to the point of nearly losing all meaning, and serving as fertile ground for all manner of bogus approaches to healthcare, to me it almost implies that there should be some kind of innate ability to practice medicine that some people have and some don’t. I don’t believe that there are medical equivalents of Leonardo da Vinci or Yo Yo Ma, virtuosos with skill that can’t be acquired by practice alone.

But we shouldn’t throw the baby out with the bathwater. While I certainly understand the desire to have an all-encompassing ideal phrase, I believe that we would be better served to be more specific when talking about the important aspects of being an effective healthcare professional, and more honest about when we are making an educated guess secondary to a lack of evidence. When a legitimate healthcare professional chalks their action up to the art of medicine, it lends credence to when a quack does the same thing...
Yeah. But, in addition to myriad other concerns, what of cultural considerations? Is the western reductive science paradigm the sine qua non of clinical cognition? Or, does that smack of "scientism"?

I return to a citation I made on another of my blogs years ago.

On the bulletin board in the front hall of the hospital where I work, there appeared an announcement. “Yeshi Dhonden,” it read, “will make rounds at six o’clock on the morning of June 10.” The particulars were then given, followed by a notation: “Yeshi Dhonden is personal physician to the Dalai Lama.” I am not so leathery a skeptic that I would knowingly ignore an emissary from the gods. Not only might such sangfroid be inimical to one’s earthly well-being, it could take care of eternity as well. Thus, on the morning of June 10, I joined a clutch of whitecoats waiting in the small conference room adjacent to the ward selected for the rounds. The air in the room is heavy with ill concealed dubiety and suspicion of bamboozlement. At precisely 6 o’clock, he materializes, a short, golden, barrely man dressed in a sleeveless robe of saffron and maroon. His scalp is shaven, and the only visible hair is a scanty black line each hooded eye.

He bows in greeting while his young interpreter makes the introduction. Yeshi Dhonden, we are told will examine a patient selected by a member of the staff. The diagnosis is as unknown to Yeshi Dhonden as it is to us. The examination of the patient will take place in our presence, after which we will reconvene in the conference room where Yeshi Dhonden will discuss the case. We are further informed that for the past two hours Yeshi Dhonden has purified himself by bathing, fasting, and prayer. I, having breakfasted well, performed only the most desultory of ablutions, and given no thought at all to my soul, glanced furtively at my fellows. Suddenly, we seem a soiled, uncouth lot.


The patient had been awakened early and told that she was to be examined by a foreign doctor, and had been asked to produce a fresh specimen of urine, so when we enter her room, the woman shows no surprise. She has long ago taken on that mixture of compliance and resignation that is that the facies of chronic illness. This was to be but another in an endless series of tests and examinations. Yeshi Dhonden steps to the bedside while the rest stand apart, watching. For a long time he gazes at the woman, favoring no part of her body with his eyes, but seeming to fix his glance at a place just above her supine form. I, too, study her. No physical sign nor obvious symptom gives a clue to the nature of her disease.


At last he takes her hand, raising it in both of his own. Now he bends over the bed in a kind of crouching stance, his head drawn down into the collar of his robe. His eyes are closed as he feels for her pulse. In a moment he has found the spot, and for the next half hour he remains of us, suspended above the patient like some exotic golden bird with folded wings, holding the pulse of the woman beneath his fingers, cradling her hand in his. All the power of the man seems to have been drawn down into this one purpose. It is tell patient of the pulse raced to the state of ritual. From the foot of the bed, where I stand, it is as though he and the patient had entered a special place of isolation, of apartness, about which a vacancy hovers, and across which no violation is possible. After a moment the woman rests back upon her pillow. From time to time she raises her head to look at the strange figure above her, then sinks back once more. I cannot see their hands joined in a correspondence that is exclusive, intimate, his fingertips receiving the voice of her sick body through the rhythm and throb she offers at her wrist. All at once I am envious -- not of him, not of Yeshi Dhonden for his gift of beauty in holiness, but of her. I want to be held like that, touched so, received. And I know that I, who have palpated 100,000 pulses, have not felt a single one.


At last Yeshi Dhonden straightens, gently places the woman’s hand upon the bed, and steps back. The interpreter produces a small wooden bowl into sticks. Yeshi Dhonden pours a portion of the urine specimen into the bowl, and proceeds to whip the liquid with the two sticks. This he does for several minutes until a foam is raised. Then, bowing above the bowl, he inhales the older three times. He sets down the bowl, and turns to leave. All this while, he has not uttered a single word. As he nears the door, the woman raises her head and calls out to him in a voice at once urgent and serene. “Thank you, doctor,” she says, and touches with her other hand the place he had held on her wrists, as though to recapture something that had visited their. Yeshi Dhonden turns back for a moment to gaze at her, then steps into the corridor. Rounds are at an end.


We are seated once more in the conference room. Yeshi Dhonden speaks now for the first time, in soft Tibetan sounds that I’ve never heard before. He has barely begun when the young interpreter begins to translate, the two voices continuing in tandem – a bilingual fugue, the one chasing the other. It is like the chanting of monks. He speaks of winds coursing through the body of the woman, currents that break against barriers, eddying. These vortices are in her blood, he says. The last spendings of an imperfect heart. Between the chambers of her heart, long, long before she was born, a wind had come and blown open a deep gate that must never be opened. Through it charged the full waters of her river, as the mountain stream cascades in the springtime, battering, knocking loose the land, and flooding her breath. Thus he speaks, and is silent.


“May we now have the diagnosis?” A professor asks.


The host of these rounds, the man who knows, answers. “Congenital heart disease,” he says. “Interventricular septal defect, with resultant heart failure.”


A gateway in the heart, I think. That must not be opened. Through it charge the full waters that flood her breath. So! Here then is the doctor listening to the sounds of the body to which the rest of us are deaf. He is more than doctor. He is Priest.


I know, I know, the doctor to the gods is pure knowledge you’re healing. The doctor to man stumbles, most often wound; his patient must die, as must he.


Now and then it happens, as I make my own rounds, but I hear the sounds of his voice, like an ancient Buddhist prayer, its meaning long since forgotten, only the music remaining.


Then the jubilation possesses me, and I feel myself touched by something divine.
[1976: Richard Selzer, MD, Mortal Lessons: Notes on the art of surgery]
I have had Dr. Selzer's books for decades. He is truly an "artist" in the literary sense. And, his works are now available in e-book formats.
LESSONS FROM THE ART

A man of letters lies in the intensive care unit. A professor, used to words and students. He has corrected the sentences of many. He understands punctuation. One day in his classroom he was speaking of Emily Dickinson when suddenly he grew pale, and a wonder sprang upon his face, as though he had just, for the first time, seen something, understood something that had eluded him all his life. It was the look of the Wound, the struck blow that makes no noise, but happens in the depths somewhere, unseen. His students could not have known that at that moment his stomach had perforated, that even as he spoke, its contents were issuing forth into his peritoneal cavity like a horde of marauding goblins. From the blackboard to the desk he reeled, fell across the top of it, and turning his face to one side, he vomited up his blood, great gouts and gobbets of it, as though having given his class the last of his spirit, he now offered them his fluid and cells.

In time, he was carried to the operating room, this man whom I had known, who had taught me poetry. I took him up, in my hands, and laid him open, and found from where he bled. I stitched it up, and bandaged him, and said later, “Now you are whole.”

But it was not so, for he had begun to die. And I could not keep him from it, not with all my earnestness, so sure was his course. From surgery he was taken to the intensive care unit. His family, his students were stopped at the electronic door. They could not pass, for he had entered a new state of being, a strange antechamber where they may not go.

For three weeks he has dwelt in that House of Intensive Care, punctured by needles, wearing tubes of many calibers in all of his orifices, irrigated, dialyzed, insufflated, pumped, and drained ... and feeling every prick and pressure the way a lover feels desire spring acutely to his skin.

In the room a woman moves. She is dressed in white. Lovingly she measures his hourly flow of urine . With hands familiar, she delivers oxygen to his nostrils and counts his pulse as though she were telling beads. Each bit of his decline she records with her heart full of grief, shaking her head. At last, she turns from her machinery to the simple touch of the flesh. Sighing, she strips back the sheet, and bathes his limbs.

The man of letters did not know this woman before. Preoccupied with dying, he is scarcely aware of her presence now. But this nurse is his wife in his new life of dying. They are close, these two, intimate, depending one upon the other, loving. It is a marriage, for although they own no shared past, they possess this awful, intense present, this matrimonial now, that binds them as strongly as any promise.

 A man does not know whose hands will stroke from him the last bubbles of his life. That alone should make him kinder to strangers…

 Far away from the operating room, the surgeon is taught that some deaths are undeniable, that this does not deny their meaning. To perceive tragedy is to wring from it beauty and truth. It is a thing beyond mere competence and technique, or the handsomeness to precisely cut and stitch. Further , he learns that love can bloom in the stoniest desert, an intensive care unit, perhaps.

These are things of longest memory, and like memory, they cut.

When the patient becomes the surgeon, he goes straight for the soul.

I do not know when it was that I understood that it is precisely this hell in which we wage our lives that offers us the energy , the possibility to care for each other. A surgeon does not slip from his mother’s womb with compassion smeared upon him like the drippings of his birth. It is much later that it comes. No easy shaft of grace this, but the cumulative murmuring of the numberless wounds he has dressed, the incisions he has made, all the sores and ulcers and cavities he has touched in order to heal. In the beginning it is barely audible, a whisper, as from many mouths. Slowly it gathers, rises from the streaming flesh until, at last, it is a pure calling—an exclusive sound, like the cry of certain solitary birds— telling that out of the resonance between the sick man and the one who tends him there may spring that profound courtesy that the religious call Love


Selzer, Richard (1996-04-15). Mortal Lessons: Notes on the Art of Surgery (Harvest Book) (Kindle Locations 403-444). Houghton Mifflin Harcourt. Kindle Edition.
Indeed. One literate physician, this man. More Selzer here, on another of my blogs.

Below, another of my favs, apropos of non-productivity treadmill "Slow Medicine."

When my family learned I was going to medical school, they were shocked. No one in the family— and our family history goes way back— had ever been a doctor, medicine being too physical a profession for our businessmen and intellectuals. Medicine was too physical for me also, but it intrigued me with its possibility of engaging with what Catholics call the last things: death, resurrection, heaven, hell, and purgatory. Also , I liked that medicine would require me to meet with everyone on a kind of equal basis. Anyhow, I reassured them, I was going into medicine through a side door that was not physical at all— the door of psychiatry. The work of Carl Jung fascinated me, and I hoped to imitate his life— seeing brilliant, well-paying patients in the morning in my stone house on Lake Zurich, writing and lecturing in the afternoon.

After the first two years of medical school, which teach the basics of medicine— anatomy, physiology, biochemistry, and pharmacology— there are the two clinical years, when the student gets to apply this learning to real patients. I hadn’t expected to like this part, but I did. There was a lot of psychology to it. I discovered that I loved taking the “history”— the story that the patient tells, within which is hidden the real meaning of his condition. I loved the physical examination of the patient, on whose body was written, if I could only read it, the real diagnosis . And I loved analyzing the facts and reaching a conclusion, which is the diagnosis, the treatment, and the plan.

After medical school I started my psychiatric training. But psychiatry, I soon realized, had changed since Jung. Madness was now located in the brain and caused by a chemical imbalance; its treatment was not analysis but medication, which often worked remarkably well. So instead of becoming a psychiatrist, I went out and practiced medicine in a county clinic, and then in a rural private practice. Eventually I went back for more training and finished the three years of a medical residency. After that I practiced in a community clinic and became its medical director.

During all those years I was ever more impressed by the power of modern medicine— by its logic, its method for arriving at a diagnosis and a treatment. Yet every now and again I had other experiences like that with Mr. Baker— experiences that left me wondering. The moment of birth. The moment of death. A mysterious knowing of just when a patient was about to get ill. All evidence of some subtle but shared world, where beings popped up and disappeared, of invisible connections with visible effects.

Naturally, I assumed that modern medicine had investigated such phenomena, and I began to research what it had learned about them. They had acquired very boring names, I immediately discovered: the “doctor-patient relationship”; the “placebo effect”; “psychosomatism”; the “effect of prayer.” Also, they had been assigned to the realm of psychology, where they had been psychologized— separated, that is, from the body where I’d seen and felt them.

Next, I looked at alternative medicine for answers. Chinese and Indian medicine did give me some insights, since the body they described was a body of flows and blockages, balances and imbalances, a body that might explain the borderless energy I’d felt in my patients . But the languages and cultures of Chinese and Indian medicine were just too different; they stood in the way of my integrating their point of view into my own.

It was at this discouraging moment that I stumbled across a book that surprised me. It was the record of a German nun’s medical practice from the Middle Ages, translated from the Latin. Hildegard of Bingen, I learned in its introduction, had been a twelfth-century German mystic, theologian, and, amazingly, medical practitioner, and she had written a book about her medicine. And, although Hildegard of Bingen’s Medicine was not a great book, it was thrilling. Because the world underlying its medicine was just the kind of world in which the observations I had tucked away for so many years had been known and used— in the West.

So I began to study Hildegard’s medicine. I began to realize that our medicine, modern medicine, had not been the first Western system for explaining the body, but the second. Before the reductive modern medicine I’d learned in medical school, there had been a different medical system in the West. This “premodern medicine” had originated with Hippocrates in the fifth century BC, and it had once been how everyone understood the body. Its approach, I realized as I studied Hildegard’s medicine, was not mechanistic: The body was not imagined as a machine nor disease as a mechanical breakdown.

But if the body was not imagined as a machine, I wondered, then how had it been imagined in the 2,500 years that preceded my medical education? Could it be that the West did have explanations for the difference between the dead body and the living, and for the other experiences I’d had in my medical life? And that these explanations had been thrown out with the triumphs of modern medicine ? Did premodern medicine and modern medicine perhaps make up a unit— one thing seen from two perspectives, like those drawings that show two different images at the same time?

I didn’t know. But I was intrigued, and I resolved to find out.

To do so, I needed time, however, and time was another concept left out of modern medicine. In the premodern world , medicine had not been a full-time profession but a craft, transmitted through families and learned as an apprentice. Most practitioners, therefore, were not only doctors, but doctors and something else. The elite were doctors and professors; the majority were doctors and farmers, doctors and herbalists, doctors and barbers. This had some advantages. For the patient, it meant that doctors had more than one point of reference; for the doctor, he or she had time to think about other things in other ways.

In the modern world, though, medical training was arduous and costly; physicians were obliged, both professionally and financially, to be available to their patients at every hour of the day and night. Personal time was scarce, and part-time positions unheard of. Today this is no longer the case. Medicine has completed its metamorphosis from craft to profession to commodity, and health-care providers now sell their wares— that is, their time— by the piece on the open marketplace.

Sweet, Victoria (2012-04-26). God's Hotel: A Doctor, a Hospital, and a Pilgrimage to the Heart of Medicine (pp. 3-6). Penguin Group. Kindle Edition.
___

Dr. Dan was not the first doctor at Laguna Honda to take care of Janice Gilroy.

At fifty, Ms. Gilroy had come and gone and come back to us many times. She was of the rare breed of Bad Girl and had been saved by modern medicine from the worst consequence of her badness— namely death— but preserved for quite a bit of suffering, as she resided just this side of death. Laguna Honda had always had a few patients like her, but now it had many more, as medicine became more and more amazing, bringing patients back— but just a little back— from the brink.

Ms. Gilroy was a drug abuser, and she would use anything, especially cocaine, marijuana, heroin, and alcohol. Cocaine is especially hard on the body, and Ms. Gilroy had the high blood pressure, kidney disease, and poor circulation to show for it. She had the poor memory of the chronic marijuana user, the bad liver of the heroin user, and the weak heart of the alcoholic. This was in general.

But in particular, she’d had a stroke in the right side of her brain. Now, a stroke on the right side of the brain is both easier and harder than a stroke on the left side of the brain. It is easier because a stroke on the right side of the brain does not injure the left side of the brain, with its capacity for speech. Also, because the brain is cross-wired, a stroke on the right side of the brain does not paralyze the right side of the body, with its usually more dexterous abilities, but the left side, and so is usually less disabling.

But a stroke on the right side of the brain is harder than one on the left because the right side of the brain has something special about it, indefinable and unnamed— a kind of centered cheerfulness— and with a stroke on the right side of the brain, a patient often becomes depressed. So that in addition to being paralyzed on her left side, and in addition to her other disabilities, Ms. Gilroy was also despondent. As an antidote to her depression , she used drugs whenever she could get them, which would upset the delicate balance among her many medications and diseases, and put her right back in the hospital.

When she wasn’t in the hospital, she lived with her daughter, who did not quite understand her mother’s disabilities nor the imperative of keeping her away from drugs. So Ms. Gilroy would stabilize at Laguna Honda, and then her daughter would take her home on a pass or even against medical advice, where she would eat, drink, and be merry, and end up back in the intensive care unit and then back with us. I’d admitted her myself in the past.

But this time it was Dr. Dan who admitted her, and he’d done a good job. He had told her daughter off—there’s no other way to say it— and she’d made herself scarce. Hence, Ms. Gilroy had no access to drugs; she wasn’t eating food that threw her system off; nor was she being taken home clandestinely, though with the best intentions in the world. And she’d improved. Everything about her was just a little bit better— heart, liver, kidneys. Until this afternoon, Dr. Dan told me, when she’d deteriorated. Actually, it had started three days earlier. At morning nursing rounds he’d heard that Ms. Gilroy was different somehow— moaning, confused, and complaining of pain. So he’d ordered pain medications. But the next day she was worse— agitated and still complaining of pain. So he’d ordered more pain medications and added something for restlessness.

Did he examine her? I asked him.

Not exactly. But he had checked her blood and urine and didn’t find any infection or illicit drugs. Then he asked the psychiatrist to see her, because perhaps the change in her mental status was psychiatric. The psychiatrist did see her and he increased her antipsychotic medications, but still she was no better . She was worse— more restless, agitated, and confused. Dr. Dan had a meeting to attend; would I take a look and try to figure out what was wrong with her?

Wow.

Trying to find the cause for the change in mental status that Dr. Dan described was daunting. Especially in someone as ill as Ms. Gilroy. There were endless possibilities. She would need a brain scan and a bone scan, a spinal tap, perhaps biopsies, and even after those, the complexity of her medical problems would doubtless require another prolonged hospitalization at the country . But Ms. Gilroy came after Steve Harp. So instead of first going through her records, talking to her family and the nurses, and then examining her, I went over to see her for myself. I’d learned from Steve that seeing the real patient was worth a thousand words.

The nurses had moved Ms. Gilroy from the open ward into one of the private rooms, I learned, which meant she must have been very agitated. When I came into her room I saw that they had also turned off the lights, pulled down the shades, and set up a large fan, blowing full blast. Although it was quiet, dark, and cool in the room, Ms. Gilroy, nevertheless, was lying on top of the sheets, stark naked. She was restless, tossing and turning and picking at the sheets, and sweat was beading off her body. When I tried to talk to her, she kept her eyes tightly shut and didn’t answer my questions, and when I tried to examine her, she screamed. I couldn’t examine her, not with my usual questions and answers, stethoscope and reflex hammer. It made me wonder how the nurses could have been getting her blood pressure, pulse, and temperature.

After Mrs. Han, Mr. Conley was a little looser about sitters, and Ms. Gilroy did have a sitter, who was reading a magazine in a chair at the foot of the bed. But I wanted to sit myself. So I asked her to go out on break, and after she left, I pulled the chair right next to Ms. Gilroy and sat down.

I sat for quite a while.

The hospital was often hot but with the shades down, the lights off, and a fan on, it was cool in the room. At first. Yet as I sat there and the minutes passed, and I watched Ms. Gilroy toss and turn, shake her head from side to side, and throw off anything that touched her naked body, I, too, began to feel hot and restless. I began to feel as if I wanted to crawl out of my skin; as if there were something in my body— some toxin, some poison—that just had to get out. And at that moment, I realized that Ms. Gilroy was acting as if she’d been poisoned , as if there were a toxin in her body that had to get out.

I wondered. Could she have been poisoned?

An actual poisoning didn’t seem likely. Despite its checkered history, Laguna Honda had never yet had a poisoner. If Ms. Gilroy was being poisoned, it was by something internal: an obscure infection, a hallucinogen she’d gotten hold of, or, most likely, by some medication she was taking.

So I left the room to get her chart; it was time to take a look. I brought it back, sat down again, and began to review what she’d been prescribed.

Dr. Dan had not added any new medications to her regime; all he’d done was increase the ones she’d already been getting— the pain medications, sedatives, antipsychotics, and antidepressants. Nevertheless, Ms. Gilroy was being poisoned, I was more and more certain, and by something that made her hot, restless, agitated, and confused.

Suddenly it occurred to me.

Serotonin syndrome.

I’d never seen it, but I’d read about it. Serotonin is a natural chemical made by the brain, and each one of Ms. Gilroy’s medications increased it. Taken all together and in escalating doses, they could have raised her brain serotonin to a toxic level, which would provoke the symptoms she had— agitation, confusion, hyperthermia . I sat and thought about it, while Ms. Gilroy moaned and picked at nonexistent bedclothes.

My problem was that there was no test for serotonin syndrome— no blood test or X-ray. The only way I could diagnose it would be to take her off her medications, and this could be dangerous, because if she did have something else instead of serotonin syndrome— an unusual kind of stroke, for instance, or an infection, or something I hadn’t thought of— taking her off her medications would make her more, not less, agitated, and make her worse. But if she did have serotonin syndrome , then I had to stop her medications immediately because serotonin syndrome is fatal.

I was sure enough, and after I explained my thinking to Dr. Dan, he agreed. I decreased Ms. Gilroy’s sedatives, antipsychotics, antidepressants, and pain medications just a little; within a few hours, she’d improved. I took her off all of them, and she calmed and cleared. Eventually she even went home again to her daughter, for a while.

Like so many of my experiences at Laguna Honda, that sitting with Ms. Gilroy in her dark and cool room as she tossed and turned changed me and stayed with me. I thought about it a lot. I’d done so little for her, even less than I’d done for Steve. I hadn’t looked into her eyes, held her hand, or reviewed all her records. I’d done nothing at all. Except sit. But how effective that had been! The diagnosis had appeared without me sending her to the emergency room, without additional tests, scans, or biopsies. Somehow, just by sitting with her, I’d understood what was wrong.

I began to try it with my other patients. Just sitting.

Just sitting was not the same thing as sitting, however. It’s a little hard to explain. It was sitting, but it was not sitting and doing something— reading or talking— and it wasn’t the “just sitting” of Zen either, which is a strenuous, focused vacancy. It was, I decided, like the mental state of knitting, but it was most like waiting for a train in Switzerland. I remembered that well. Sitting on a bench, with ticket purchased and in your pocket, knowing that the train will arrive on time; there is nothing more to worry about and nothing more to do. The activity of the train station flows around you, and you observe, but not intently; you are aware, but not focused. People come and go; there is a hustle and bustle; but it is not your hustle and bustle.

That was “just sitting,” and after Ms. Gilroy, I took the time to “just sit” in this way with all my patients. Especially if they took a turn for the worse, or if a nurse or a family member was worried that something wasn’t quite right. I would leave my cell phone in the nursing station, turn off my beeper, move a chair next to the patient, and sit down. Not for long— five or ten minutes . Sometimes the patient would want to chat, and we would chat, and sometimes I would study the patient’s face, bedclothes, and bureau. But mostly I would just sit. And something, somehow, would happen. It would become clear what, if anything, was wrong with the patient and what, if anything, I could do about it. [ibid, pp 288 - 294]
When I got this book, I had to put the world on pause while I read it cover to cover.

Up next in this inquiry into "The Art of Medicine."


A voluminous history. A very interesting read. It's where I got the Voltaire quote that comprises the title of this post.
ABSTRACT: 
There is no such thing as Chinese, Hindu, Muslim, or European physics or chemistry. Why then are there distinct schools of medicine (Ayurvedic, Chinese, homeopathic, etc.)? We find the answer in the differing tasks, which natural and medical sciences perform. Physicians interact professionally with patients and derive material benefit. The patient seeks the service of the designated best healer within the limits of affordability for cure and not for testing the merit of science. If one system fails, the patient tries another, and there is a stream of assuring healers ranging from spiritualists to specialists. This environment is favored by the limits of medical science itself, which is further compounded by unsatisfactory institutions of medical care. Although modern medicine has differed from other schools of medicine (Ayurvedic, Chinese, homeopathic, chiropractic) throughout history, especially since the dawn of the twentieth century, the healing ability of modern medicine is very recent; and here too, with the exception of surgery and supportive therapy, even common diseases such as diabetes and hypertension can be controlled but cannot be cured. Consequently one may expect modern and other schools medicine to co-exist in a mutually hostile relationship for a very long time.

Daya Ram Varma MD. PhD (2011-05-14). The Art and Science of Healing Since Antiquity (Kindle Locations 195-204). Xlibris. Kindle Edition.
SCIENCE AND SOCIETY 
In general, scientists live in their exclusive world from which general public is excluded. Pythagoras had a strict rule of secrecy for his school, and one of the pupils was drowned because he violated the rule of secrecy of the school. This was fortunately replaced by a trend of public discourse about scientific findings. Many discoveries were publically announced. Darwin’s book on evolution was intended as much for public as for biologists. In the twentieth century, however, science became largely confined to the laboratories, as far away from public as possible. Findings were published in science journals exclusively for scientists. Scientists were no more involved in creating a culture of science. 

It is redeeming to note that modern science, including medical science, is beginning to recognize the significance of interaction between scientists and general public; and important media, both print and television, are beginning to highlight scientific discoveries in open channels. On the other hand, modern scientific research has become very technical. and most of the publications in prestigious journals like Nature and Science are incomprehensible even to scientists in different fields. The cautious note by Yves Quéré (2010) that “academics must engage with society” is a welcome development. Hopefully, all major journals would find a way of communicating with public at large in creating a culture of science and public awareness about scientific medicine... [ibid, Kindle Locations 9315-9328]
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“Life is short, and the Art long; the occasion fleeting; experience fallacious, and judgment difficult.” - Hippocrates, Aphorisms
"ART OF MEDICINE?" WHERE DOES "PHILOSOPHY" COME INTO PLAY?

Recall Bunge:

At first sight, medicine is alien to philosophy, since the former attempts to heal, or at least to alleviate pain, whereas philosophers analyze and systematize very general ideas, such as those of reality, knowledge, truth, and the good. In his Ancient Medicine, Hippocrates (430– 420 B.C.) warned against philosophy. However, arguably, he only rejected the fantasies of the pre-Socratics, in particular the Pythagoreans, who had strongly influenced his precursors. Half a millennium later, his great disciple Galen opined that “the best doctor is also a philosopher.” 

As a matter of fact, medicine has always been saturated with philosophy, if only because medics cannot help using general ideas, such as those of reality and truth. Let us see how any contemporary physician philosophizes during a routine clinical examination. When the patient appears, the medic takes it for granted that she is a real being (ontological realism) who comes for help, something the doctor is willing to offer to the best of his ability and in accordance with the Hippocratic precept (humanism). To find out what ails her, the physician starts by asking her certain questions, whereby he tacitly admits that there is something he can get to know (epistemological realism), as well as something he can do to help her (praxiological optimism). 

Thus, the contemporary physician does not believe that diseases are sent by a deity as punishment for sins, or by a sorcerer for sheer malice, and he regards medicine as an ars vivendi, not an ars moriendi. Moreover , he knows that death is the natural end of life, not God’s punishment for Adam’s original sin. In short, the modern medic adopts tacitly a secular worldview, and relies on biology rather than on theology. However, let us go back to the doctor’s office. 

The patient’s replies to the doctor’s initial questions may prompt additional questions, as well as a look at the patient’s clinical history, which nowadays is just a click away — an ambivalent fact, because it results in the physician’s looking more at the screen than at the person. But, far from believing everything the patient tells him, the doctor may doubt some of it (methodological skepticism). And he will try to translate into signs or objective indicators the symptoms that the patient feels — for instance, pains into lesions. Such translation of feelings into biomarkers betrays a naturalist view of disease, that is, the thesis according to which sickness symptoms are the subjective correlates of morbid bodily processes. To carry out such translations, the physician may have to use elements of the so-called medical technology, from the humble stethoscope to the sophisticated MRI (magnetic resonance imaging) apparatus. And he won’t forget that there are neither isolated organs nor patients in a social vacuum (systemism). 

As the medic absorbs the stream of data pertinent to the medical problem at hand, he keeps forming, evaluating, discarding, and replacing educated guesses (hypotheses about the nature of the disease and its possible causes). Zigzagging between data and hypotheses, he eventually hits on the conjectures that seem most plausible in the light of his knowledge and experience as well as of the data he has just collected...
Bunge, Mario (2013-05-30). Medical Philosophy: Conceptual Issues in Medicine (Kindle Locations 113-136). World Scientific Publishing Co Pte Ltd. Kindle Edition.
To what extent does introspective acuity borne of fluency in the Humanities (e.g., literature, philosophy) inform clinician competency (inclusive of focus on and adeptness with respect to the "healing" that the patient wants)? Or, does scientific/technical competency suffice (with the curriculum updated simply to include facility with digital technology and its informatics traffic)?

Recall, again, that the roots of the word "philosophy" are "philo" ("filial," love of, affection for) "sophia" (knowledge, truth).

WHAT OF EMOTION? THE IMPACT OF "EMPATHY"?

Every hospital dutifully includes the word compassion somewhere in its mission statement. Every medical school rhapsodizes about the ideals of caring. But the often unspoken (and sometimes spoken) message in the real-life trenches of medical training is that doctors shouldn’t get too emotionally involved with their patients. Emotions cloud judgment, students are told. Any component of a curriculum upon which interns slap the “touchy-feely” label is doomed in terms of attendance. Hyperefficient, technically savvy medical care is still prized over all else. 

But no matter how it’s portrayed, and no matter how many high-tech tools enter the picture, the doctor-patient interaction is still primarily a human one. And when humans connect, emotions by necessity weave an underlying network. The most distant, aloof doctor is subject to the same flood of emotions as the most touchy-feely one. Emotions are in the air just as oxygen is. But how we doctors choose— or choose not— to notice and process these emotions varies greatly. And it is the patient at the other end of the relationship who is affected most by this variability...

No one questions whether empathy is important for medicine, but there is a debate as to whether empathy (or lack thereof) is innate or something that we learn along the road of life. It’s clearly some combination of both, but it is intriguing to consider the relative contributions...
Smack square in this debate over whether empathy is innate or learned is the consistent and depressing observation that medical students seem to lose prodigious amounts of empathy as they progress along the medical training route. Something in our medical training system serves to stamp out whatever empathy students bring with them on day one. 

The research appears to conclude that it is the third year of the traditional medical curriculum that does the most damage. This is a dispiriting finding, as the third year of medical school is the one in which medical students take their first steps into actual patient care. For most students, the third year of medical school is eagerly awaited. After two long years sitting in classrooms, you get to actually do what it is that doctors do— be in hospitals, take care of patients. One would think that these first steps into real patient care would bring forth all the idealism that drove students to medical school in the first place— idealism that is sorely tested in the first two years of memorizing reams of arcane facts. 

But the reverse seems to occur. After their seminal clinical experiences involving real contact with real patients, medical students emerge with their empathy battered. Their ideals of medicine as a profession are pummeled by their initiation into the real world of clinical medicine. And it is in this demoralized state that we send them into residency to accrue what are arguably the most influential and formative experiences of becoming practicing physicians. 

Why do medical students lose empathy during the clinical years of medical school? There are likely many reasons. Some are related to the disorientation and fatigue experienced by students as they are thrown into the fire of hospital life— so different from the orderly, clean, controlled classroom life in which they have existed for two years. That student world is cemented along predetermined schedules, explicit curricula, definitive tests. Even if the knowledge requirements are overwhelming— as they are— medical students at least know what to expect, down to nearly every second of their waking hours...

Ofri, Danielle (2013-06-04). What Doctors Feel: How Emotions Affect the Practice of Medicine (pp. 4-31). Beacon Press. Kindle Edition.
This is nominally a "Health IT blog," or, so it began when I commenced my Meaningful Use Regional Extension Center work in 2010. Why do I continue to press on and out with these broader issues (including my "Third Leg of the QI Stool" ruminations)?

Do they even matter materially?

I obviously think they do. Part of the rationale is illustrated in the book I recently cited, "How Google Works" (scroll down). The fundamental ingredient in their undeniably lucrative Secret Sauce? Unwavering devotion to the wants and needs of the End User. As such pertains to Health IT, I am in utter agreement with Jerome Carter, MD that Health IT must, as a dispositive priority, support and enhance clinical care, via optimization of clinical workflow. Not administrative/billing workflow. Not time-wasting ("Quadrant 3") CQM reporting, or anything else that obstructs the clinician and her healing imperative. Focus unwaveringly on the end user.

To effectively support these end-users, I (and we) need to fully understand every aspect of their worlds. The healer must understand the ailing in every aspect that feeds the SOAPe. Reciprocally, those who work in support of clinicians, and patients under the duress of injury or illness must understand those who seek to effectively diagnose and treat if healing is to occur. Effective communication must happen, and much of that communication is a narrative function, it is not simply comprised of chunks of "structured data" that can be dumped into a SQL database or Excel sheet or SAS table and "mined." We are more than empirical coal seams. We are, IMO, significantly more than the nominal sums, means, distributions, correlations, tabulations, and least-squares polynomial fitted slopes of our "structured data."

Our lives are narratives. Narratives fraught with meaning.

Stay tuned. BTW, see also
The Art of Diagnosis — Solving the Clinicopathological Exercise
David M. Eddy, M.D., Ph.D., and Charles H. Clanton, M.D.
N Engl J Med 1982; 306:1263-1268May 27, 1982DOI: 10.1056/NEJM198205273062104

Abstract
We analyzed the psychological process by which physicians solve complicated diagnostic problems, such as those posed in clinicopathological exercises. The challenge of differential diagnosis is to select the most probable cause of a patient's condition, yet the size of the problem, the nature of medical information, and the notorious inability of human beings to manipulate probabilities in their heads all conspire against the diagnostician to make it virtually impossible to employ Bayes' theorem in routine diagnosis.


Unable to estimate the desired probabilities explicitly, physicians recast the problem into a form that uses one of their most effective mental skills — that of comparing patterns. A study of 50 clinicopathological conferences published in the Journal suggests that the following six steps are taken to arrive at a diagnosis: aggregation of groups of findings into patterns, selection of a "pivot" or key finding, generation of a cause list, pruning of the cause list, selection of a diagnosis, and validation of the diagnosis.


Although the clinicopathological conference differs in some important ways from real-life diagnostic problems, we belive that the principles described here closely resemble those used in practice. Properly selected clinicopathological conferences are excellent windows through which to study diagnostic reasoning...
The problem
The formulation of the differential diagnosis is one of the most important and intellectually challenging aspects of medical reasoning. When the clinician and counters a patient, the clinician faces a vast amount of information: the patient's lifelong personal and medical history; the patient's report on the current medical problem; and the results of numerous examinations, procedures, and tests. In addition to this information the clinician must have a tremendous amount of knowledge about health and disease. Somehow, seasoned clinicians are able to sort their way through the details, clear the confusion, and make the diagnosis.

Ideally, to select the most probable diagnosis, physician needs to calculate and compare the probabilities of various diseases that could have caused the patient signs and symptoms...
Firewalled :( That's the bulk of what I could get at. Looks like there is discussion of Bayesian anterior/posterior inference considerations, which remain insufficiently understood and deployed.

SATURDAY UPDATE

We are inexorably drawn by much of the foregoing back Down into The Weeds'...

A simple example will illustrate medicine’s missing foundation. Consider a person with chest pain. Careful review of the literature shows that a practitioner investigating this symptom needs to take into account approximately 100 diagnostic possibilities, involving most medical specialties. Each diagnostic possibility is definable as a combination of simple, inexpensive findings from the history, physical and basic laboratory tests. Checking all of the findings for all of the diagnostic possibilities results in approximately 440 findings on each patient. Each positive finding suggests one or more of the diagnostic possibilities. Each patient’s particular combination of positive findings can be matched against all of the combinations of findings representing the diagnostic possibilities for chest pain. The output of this matching process is an individualized set of diagnostic possibilities, plus the patient’s positive and negative findings for each. These findings constitute initial evidence for and against each possibility. The total set of possibilities (i.e. those for which at least one positive finding is made) represents the diagnoses worth considering for that patient. External tools generate this output by simple matching, without dependence on the fallible minds of costly physicians. The tools distill this output from the accumulated experience of countless patients and practitioners—experience that would be otherwise lost.
 

This meticulous matching process is feasible only with software tools. The minds of physicians do not have command of all the medical knowledge involved. Nor do physicians have the time to carry out the intricate matching of hundreds of findings on the patient with all the medical knowledge relevant to interpreting those findings. External tools are thus essential. But the tools are trustworthy only when their design and use conform to rigorous standards of care for managing clinical information.

Without the necessary standards and tools, the matching process is fatally compromised. Physicians resort to a shortcut process of highly educated guesswork. They begin with guesses about diagnostic possibilities that might account for the chest pain. Sometimes very sophisticated, these initial guesses lead to further guesswork about what to check during the initial history, physical examination and laboratory tests for investigating whatever diagnostic possibilities come to mind. And then physicians make more guesses about what the data mean, which in turn shapes their judgments about what further data to collect. Varying from one physician to another, these highly educated guesses are not explicit— physicians do not carefully record their thinking or the information they take into account. Inputs to decision making are thus undefined.


We use the term “guesses” because these key initial judgments are made on the fly, during the patient encounter, based on whatever enters the physician’s mind at the time. That mind may be highly informed and intelligent, but inevitably its judgments reflect limited personal knowledge and experience, and limited time for thought. Euphemistically termed “clinical judgment,” physician thought processes cause a fatal voltage drop in transmitting complex knowledge and applying it to patient data. The outcome is that the entire health care enterprise lacks a secure foundation.


Equally insecure are the complex processes built on that foundation: decision making, execution, feedback and corrective action over time. Responsibility for all these processes falls on the mind of the physician. Here again the mind lacks external tools and accounting standards for managing clinical information.


Medical practice is thus trapped in a subjective realm. Unlike scientific practitioners, medical practitioners do not operate in an objective realm, where the contents of thought and knowledge exist independently of the individual mind, a realm where knowledge can be reliably transmitted and applied, where new knowledge can be rapidly translated into practice, where all knowledge can be tested against patient realities. Isolated from this objective realm, the mind becomes a negative force, a cause of confusion and disorder. Physicians are not equipped to fulfill their immense responsibility safely and effectively. Other practitioners are not equipped to share that responsibility with physicians. Patients are not equipped to work effectively with multiple practitioners, nor to assume the ultimate burden of decision making over their own bodies and minds.
Third parties are not equipped to create order out of this chaos. Practitioners and patients are not accountable for their own behaviors, while third parties are left free to manipulate disorder for their own advantage. In short, essential standards of care, information tools and feedback mechanisms are missing from the marketplace. These missing elements are in large part already developed (see parts IV and VI below). Yet, the underlying medical culture does not even recognize their absence. This does not prevent some practitioners from becoming virtuoso performers in narrow specialties or skills. But their virtuosity is personal, not systemic, and limited, not comprehensive. Missing is a total system for enforcing high quality care by all practitioners for all patients... [pp. 2-3]
In Chapter VIII, Messrs. Weed aim sharp fire at the still rather static prevailing medical education paradigm.
Medical Education and Credentialing as Barriers to Progress
A. Extending the health care reform agenda to medical education and credentialing

1. A century of stagnation

Productive use of advanced medical knowledge requires an integrated system of care with a rational division of labor in which all participants see clearly how their roles contribute to solving medical problems. All participants should be able to avail themselves of knowledge that individually they do not possess, practitioners should not be permitted to perform at a level beyond their demonstrated competence, and no group of practitioners should be able to pursue its own interests to the detriment of the larger system of care.  
Progress towards a rational division of labor within an external network of knowledge tools is largely absent. Isolated advances are not evolving and coalescing into an integrated system of care. We all are trapped in a non-system, where an elite class of practitioners is permitted to rely on limited personal knowledge and intellect. Graduate medical education and credentialing protect this physician elite from competition that could otherwise reshape medical practice. The health care system has thus been remarkably slow to adapt to the new environment created by modern information technologies. And that environment is still developing. Our culture is still working out the right division of labor between human cognition and external information tools. The subculture of education, however, lags far behind the domains of science and commerce in that development. [p. 195]
That entire chapter takes my breath away, notwithstanding that its critique of pedagogy did not delve explicitly into "liberal arts / humanities" literacy considerations. But, consider the closing words of the book [pp. 265-266].
Appendix b: The Art of Medicine:
Finally you may ask where - does the art of medicine fit in? Surely no system will make one kind, thoughtful, or sympathetic: to care deeply about the plight of others is a quality not dispensed in manuals of any type. But to say that the art of medicine is not dependent on a great deal of discipline and order is to miss perhaps the true understanding of what underlies art in any form. The physician as well as the musician and poet should read the following words of Stravinsky and at least recognize the possibility that they also apply to him:

A mode of composition that does not assign itself limits becomes pure fantasy. The effect it produces may accidentally amuse, but is not capable of being repeated. The creator’s function is to sift the elements he receives, for human activity must impose limits upon itself. The more art is controlled, limited, worked over, the more it is free.
 

As for myself, I experience a sort of terror when, at the moment of setting to work and finding myself before the infinitude of possibilities that present themselves, I have the feeling that everything is permissible to me. If everything is permissible to me, the best and the worst; if nothing offers me any resistance, then any effort is inconceivable, and I cannot use anything as a basis, and consequently, every undertaking becomes futile.
 

What delivers me from the anguish into which an unrestricted freedom plunges me is the fact that I am always able to turn immediately to the concrete things that are here in question. I have no use for a theoretic freedom. Let me have something finite, definite—matter that can lend itself to my operation only insofar as it is commensurate with my possibilities. And such matter presents itself to me together with its limitations. I must in turn impose mine upon it. So here we are, whether we like it or not, in the realm of necessity. And yet which of us has ever heard talk of art as other than a realm of freedom? This sort of heresy is uniformly widespread because it is imagined that art is outside the bounds of ordinary activity. Well, in art as in everything else, one can build only upon a resisting foundation: whatever constantly gives way to pressure constantly renders movement impossible.
My freedom thus consists in my moving about within the narrow frame that I have assigned myself for each one of my undertakings.
Interesting.
"Surely no system will make one kind, thoughtful, or sympathetic: to care deeply about the plight of others is a quality not dispensed in manuals of any type."
No, those kinds of character traits are to be acquired elsewhere in the educational system (and outside its walls). Is healthcare delivery irreducibly both science and "art" (the latter facet inadequately understood and defended), or is it merely a suite of dispassionately applied, increasingly complex technical crafts, driven by numbers and codes and cognitive "reasoning" skills? I'll repeat my prior question:
"To what extent does introspective acuity borne of fluency in the Humanities (e.g., literature, philosophy) inform clinician competency (inclusive of focus on and adeptness with respect to the "healing" that the patient wants)? Or, does scientific / technical competency suffice (with the curriculum updated simply to include facility with digital technology and its informatics traffic)?"
 It's perhaps worth mentioning that Damasio points out in Descarte's Error that one has to care about reasoning. Things are not simply "facts and logic over here; emotion over there."

Ahh... what do I know? All I ever wanted to do was be a guitar player.
___

More to come...

Sunday, December 7, 2014

#Data4Health San Francisco listening session


Much to reflect upon. A natural follow-on from my prior post. Props to RWJF for sponsoring this listening roadshow.


I responded immediately to the post-conference Survey Monkey questionnaire. My free-form responses:
9. What did you think of the breakout topics?

They were fine, as far as they went. Severe time constraint, given the breadth and complexity of the topic. A lot of what I heard discussed really just falls under the category of "Upstream" issues. We will also need to more forcefully address going forward problems of "data quality," -- "accuracy," and the potentially damaging implications of its insufficiency.

10. Did you learn something you can use after the meeting?

Beyond the problems with raising public awareness, a principal takeaway for me is just how far we in the space have yet to go in clarifying fundamental topical definitions. And, the reinforcement of the fact that I seem to really have lost the pedantic fight to preserve the lexical reality that "Data ARE"! Writing "data IS" in a refereed scientific publication is the faux pas equivalent of farting out loud during a plenary session (beyond the fact that it would never get past the editors).

13. Do you have anything else to share you didn't get the chance to?


I will be summarizing my reflections on my blog. Haven't had time yet. Though, I wanted to raise the example of the work now being done at Google Research with their "Google Fusion" initiative, which seeks to surmount the heterogeneity of myriad "big data" formats in the service of structured data merging / synthesis for improved analytics.

Finally, I commend you for this important effort. Thanks to everyone involved.
On the "Upstream" thing. See my prior posts When it comes to health, your zip code matters more than your genetic codeand "The ultimate population health "Upstream" issue?"

And, below, from my August 13th post:



On the Google Fusion thing:
The overarching goal of structured-data research at Google is to build tools that enable a rich ecosystem of structured data on the Web. To fuel such an ecosystem we need to build tools for discovery, extraction, annotation, sharing, querying, integration, visualization and publishing of structured data sets.

Google Fusion Tables lies at the center of these efforts, offering a tool for data owners to easily upload, query and share data sets. Once the data is uploaded to Fusion Tables, the user can query the data, find related data sets that other users have made public and combine multiple data sets. Users can also create compelling visualizations easily and publish them on the Web. Fusion Tables has been used by a wide variety of users (see our gallery), most notably by journalists and in crisis response.

In our efforts to enable discovery of structured data sets on the Web we developed the WebTables System that extracts the HTML tables that contain valuable data. We extracted a corpus of over 150 million high-quality tables and have developed methods for searching tables in response to queries. In a previous line of work we developed techniques for tapping the content stored in databases behind forms, known as the deep web (or the invisible web). Our research has produced methods for automatically analyzing web forms and submitting meaningful queries to them, to obtain HTML pages that can be inserted into the Google index.
Worth your time to ponder the possible utility in the healthcare "Big Data" space.

Below, some shots I took:

Conference moderator Ivor Braden Horn, MD, MPH
Nice turnout.
RWJF's awesome Mike Painter, MD, JD
HHS's Karen DeSalvo, MD, MPH, MSc had to remote in.
Andrew Rosenthal of Jawbone touted their products' utility for personal health data.
Above, Jawbone Cloud data showing a huge spike in sleep disruption during the recent Napa earthquake.
I'm not a big Jawbone fan. I bought three a few of years ago, one for me, one for my wife, and one for my daughter. Mine and my wife's both went bad in short order. More hassle than it was worth to try to get support service. I hope they've improved their products. I now have a FitBit. It's not a whole lot better. Moreover, there's some troubling news on the quantified self wearables front. See my post "Big Data" and "Surveillant Anxiety."

apropos, I've just been asked to read and review Vik Khanna's irascibly iconoclastic new book,

My favorite fitness app story is that of an acquaintance who told me how the FitBit had improved his life, prompting him to walk more at work and even have his employer provide him with a standing desk. This would all be a very positive step for the many Americans who move too little and sit too much, but this guy is one of the fittest people I know, a physician and an avid cyclist. His habits have already lowered his manageable health risks as low as they can go; using a FitBit isn’t going to change them further. For him, as for many people, tidbits like the FitBit are toys that entertain. I don’t know anyone who needed a FitBit less. On the flipside, there is not much evidence that apps, gadgets, and websites are really having much of an impact on the health of anyone who really needs to find a way to change. Why is that? Because if you are not internally motivated to succeed, a digital toy will not take you there.

The toys, apps, and websites that we want to do the work for us are the electronic equivalent of unused treadmills and weight machines currently functioning as expensive clothes hangers in basements across the country. Health success doesn’t start with trivia such as “Which running app do you use?” It starts with fundamentals, such as “Do you run [substitute the exercise of your choice] at all?” And, if you don’t, why don’t you? Because somewhere along your road in life, people stopped telling you it was important to do so and that is was okay not to, that it was your choice. Well, see, what happens when you make a lot of bad choices it creates an opportunity for government and institutions that want your money and obedience to come in and start to control your choices. When you start acting like a sheep, someone is going to eventually shear you.

Maybe someday all the hype about wearables will translate into something beyond making money for the people who make the devices and their related apps. But, until then, the wearables you need to invest time and money in are your attitude, your strategy, and how you wear them for the world to see. Funny thing about self-image and self-respect… the people I know who carry themselves with the most confidence and poise don’t use any of this stuff. They stick to the basics, the indispensables. Everything else is just gravy.

Vik Khanna. Your Personal Affordable Care Act: How To Avoid Obamacare (Kindle Locations 317-335).
Vik recently threw some serious cold water into the comments at the THCB post "Health Data Outside the Doctor's Office."
"While there are an enormous number of uses for the data that we can imagine and many more we cannot yet anticipate…” 

This is a fancy way of saying we have not decided how we will use these data to manipulate people, scare them, control them, and make them come to believe that, contrary to the opening of this post, the government and its private sector enforcers, really are your health salvation, because, to paraphrase Deep Throat, that’s where the money is. There is no profit in leaving people alone. 

You need no data about me and how I live my life. You are entitled to nothing that I do not want to share with you voluntarily. The federal government used to gather data the very old-fashioned way, by doing surveys. Is there any evidence that we did not get useful information that way? And, even if it was less than ideal, was it so deficient that sacrificing privacy, consent, and voluntary participation are worth the price of admission to this brave new world of “we need all the data we can get?” Al Lewis and Granpappy Yokum above have it nailed exactly right. 

Now, the data geeks have all taken over and want to bamboozle the rest of us into believing that their technology-and-data-are-magic-fairy-dust mythology. The shroud of benevolence obscures a more subversive agenda. Bureaucrats and technocrats never do things that do not serve their own interests first: bigger budgets, longer titles, tenure (in the case of academics), etc. 

How I eat, exercise, work, enjoy myself, is none of your g.d. business. And neither is how a create a culture of health in the unit that matters the most…my family. 

It is long past time for Americans to tell government bureuacrats [sic] to take a hike...

I am as disdainful and distrustful of big philanthropy as I am of big government. In my view, big philanthropy is one of the government’s private sector enforcement tools because of the facade of benevolence that it projects. In reality, there is a revolving door between big government and big philanthropy leaders, and, even more important a long history of the two groups playing footsie with each other while they all accrue more power, more money, and more authority over the lives of individuals.

I would tell people to openly and vigorously reject cooperating with your initiative.
Ouch. Tell us how you really feel, Vik.

Toward the end of his book, Mr. Khanna addresses the Upstream:
Acknowledge explicitly that the healthcare industry cannot fix social and community dysfunction. Medical care cannot make up for lousy schools (also an area in which there is too little competition and efficiency and too many bloviating bureaucrats), broken families, churches with pastors and priests who break every commandment they preach from the pulpit, and communities with no economic prospects. Medical care will not fix someone who does not respect himself. 

Fund and advise communities on how to make their environments safer for cyclists, runners, and walkers. And, I don’t mean just create lanes, which are a good start. Fund creation of entire networks of parks, greenways, and alternative routes for getting around 24/7, and then pay for the police to patrol those areas and keep them safe. 

Fund health and physical education in every school in America from pre-k through graduate and professional school, and make schools compete for grant money. How is it possible college students arrive at that stage of life not knowing how to take care of themselves? 
This morass is our fault. It is the natural cascade of adversity that results when individuals largely fail to exercise their personal will in a positive manner, and we invest too fully and too naively in professions and industries that have motivations and incentives antithetical to our own. Our transformation into an information culture actually worsened the malady. We are so conditioned to success at the speed of a search engine that, like that person who aspires to retire early, but refuses to save or invest, we’ve forgotten to manage the fundamentals. First, that every healthy lifestyle decision you make today, from diet and exercise to outlook and mood requires thought and an exertion of will. Even in the age of Google, your choices matter, and choosing, not just wisely, but strategically, is an option available to most people. Healthy lifestyle is a lifelong pursuit that requires modification and flexibility as you age and your circumstances change. [op cit, Kindle Locations 3019-3037]
More on his book later.
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JASON UPDATE

From a 3rd JASON Report (pdf).
Data for Individual Health

Executive Summary
Introduction

The promise of improving health care through the ready access and integration of data continues to draw significant national attention and federal investment. Information technology is rapidly expanding this data universe beyond traditional information associated with health care providers to embrace information in the larger spheres of health and wellness. This includes not only electronic health records (EHRs), but also personal health records (PHRs) and sources such as environmental data and social media data, some of which may be related only indirectly to the delivery of health care. To date, federal investments in health data infrastructure development, through mechanisms such as the Centers for Medicare and Medicaid Services (CMS) Medicare and Medicaid Electronic Health Record Incentive Program, have focused on the medical care of individuals. This report discusses how to expand this vision, with a focus on the health of individuals and the development of a Learning Health System...
  1. 1.3 Summary Today, the delivery of health care moves in a linear fashion, proceeding from preventive medicine, to diagnosis, to treatment, and ultimately to outcomes. This process is informed by clinical research, but there is an inadequate feedback loop between health care outcomes and clinical research, reducing opportunities for further learning in this system. Additionally, population health research and community engagement are not adequately connected. A “Learning Health System” would connect the medical system with broader societal inputs, creating important links between health and wellness and health care. This concept highlights natural roles for EHRs and PHRs, but also points to a level of data access, integration, and scalability that goes well beyond the interoperability of EHR systems...
  2.  
  3. 1.5 Data Associated with Health
    In extending the ideas of the JASON-proposed architecture to the broader realm of health, it will become necessary to expand greatly the types of data that can be ingested and analyzed. In addition to the traditional data associ­ated with health care (e.g., EHR data), it will also be necessary to assimilate data from PHRs. These include, for example, data from personal health devices, patient collaborative networks, social media, environmental and de­mographic data, and the burgeoning data streams that will soon become available through progress in genomics and other “omics.” Despite the pro­ fusion and complexity of new data sources associated with personal health, the architecture for a learning health system would look essentially the same as that proposed by JASON for EHRs except that the data layer must also encompass these highly diverse forms of personal health information. The requirement for interoperability through the adoption of open APIs becomes even more critical here; without this interoperability it will be extremely difficult to scale up today’s health information technology (IT) systems to assimilate and analyze these new data sources...
I study and reflect on all of the JASON stuff. I'll hold my fire on this one until I've fully digested it.

Another of my tweets.


Obtuse analogy? Where do "data" ("do," not "does") fit into concepts such as the (controversial phrase) "art of medicine"? Are we subtly yet significantly more than the sum of our "structured data"?
Philosophia sana in ars medica sana?
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UPDATE: YET ANOTHER ONC HEALTH IT PLAN

Overview
Improving the secure availability and use of health information allows individuals to take ownership over their health, partner with their health care providers, and improve their quality of life and health. It strengthens the delivery of health care and long-term services and supports, and allows public health agencies to detect, track, manage, and prevent disease outbreaks. Information also fuels research and innovation, spurring advancements in scientific discovery. 

Health information technology (health IT) allows individuals and health care entities and providers, home- and community-based supports, and public health entities to electronically collect, share, and use health information. The term “health IT” includes a wide range of products, technologies, and services, such as electronic health records (EHRs), mobile and telehealth technology, cloud-based services, medical devices, and remote monitoring devices, assistive technologies, and sensors.
Federal agencies provide direct care and health insurance, protect public health, fund health and human services for certain populations, invest in infrastructure, develop and implement policies and regulations, and advance groundbreaking research. Given this range of activities, the federal government is also positioned to improve health, health care, and reduce costs through the secure use of information and technology. 

The Federal Health IT Strategic Plan 2015-2020 (Plan) identifies the federal government’s health IT priorities. While this Plan focuses on federal strategies, achieving the vision and goals requires collaboration from state, local, and tribal governments. Efforts by health care entities and providers, public health entities, payers, technology developers, community-based nonprofit organizations, home- based supports, and academic institutions are also essential.
Link to the full pdf report here.
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More to come...