#digitalhealing

We weren’t always allowed to be loud.

Some of us whispered our truth into pillowcases and prayed it wouldn’t break the family. Some of us learned to survive in silence, soft and coded.

But now we’re here.

Creating worlds from wounds. Writing love into the margins. Wearing pride not as a costume—but as a birthright.

🌸 Desi. Queer. Healing. Loud in our own way.

This Pride Month, we honour the quiet ones who dared to dream out loud.

Digital twins of hearts could help diagnose and treat cardiac disease This piece from The Economist describes efforts by a group, based in Belgium and England, to create a digital version of an individual’s heart that can be used for simulations and problem solving, based on their unique organ. It’s a technique that has been …

Technology and Medicine Read More »

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In 1999 McGraw-Hill published a book, co-authored by Jeff Bauer, a prominent health futurist, and me, a frontline rural family doctor, entitled Telemedicine and the Reinvention of Healthcare. Telehealth was so promising, we said then, that we expected these technologies to lead the way to not just reforming, but to reinventing healthcare. We asked the …

Telemedicine and COVID-19: I Was into Telemedicine when Telemedicine Wasn’t Cool Read More »

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When I was an intern at Cook County Hospital in Chicago, for each of our patients who didn’t make it, we house staff received a good mark on our academic record if the family consented to an autopsy. Autopsy rates were also taken into account when the medical training institution itself was up for re-accreditation. …

Whose Record is it Anyway? Read More »

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The electronic medical record (EMR) has delivered on some on its promise to put patient information at the fingertips of the practicing clinician.  Before the EMR, I’d wistfully read about airplane mechanics who carried a tablet that served as a gateway to everything there was to know about the plane they were working on, as …

Godzilla vs. Megalon Read More »

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Here’s the gist of a conversation I just had with a longtime friend.  Patty’s practiced a couple of medical subspecialties, as well as completed a rigorous fellowship in medical ethics.  A ton of experience caring for patients, along with her intelligence and compassion, has made her pretty wise.  This is a doctor who gets both the intellectual and the emotional pieces of being a physician and a healer.

The conversation naturally turned to one of our favorite subjects, the poor medical care that results way too often when doctors don’t listen to patients.  She told me about a demented old woman she’d just been asked to see.  Four days prior, this unfortunate patient had landed in the intensive care unit after suffering a disastrous medical event.  By the time Patty saw her in the ICU, the woman had a tube in her mouth with one end in her trachea and the other attached to a respirator that breathed for her; an IV poking out of her neck that delivered fluids to the central veins in her chest, and another line that reached into her heart all the way from an artery in her wrist.  No doubt there was a catheter in her bladder too.

It was my friend’s job, as the ethicist attached to the intensive care unit, to talk to the family about how they wanted to proceed.  Even among professionals who encounter death and dying all the time, many are surprisingly uncomfortable with talking to patients and their loved ones about resuscitation status.  Death is a scary subject.  Years on the front lines as a hospice physician and ethicist have made Patty comfortable with, even eager to ask these difficult questions because, almost always, it’s a great relief for people near the end of life to be asked directly what they want and be given the opportunity to respond with clear, honest answers.

This old woman’s family, upon being posed the dreaded question of code status, answered, immediately and definitively, that their mother, wife, grandmother, did not wish to be resuscitated; that, in fact, she never even would have wanted to be intubated.  So the ethicist/physician informed the staff, who immediately turned off the respirator and removed the endotracheal tube.  She died peacefully a few minutes later.  In the meantime, Patty went to the computer, called up the patient’s electronic medical record (EMR), and checked the boxes for “Do Not Resuscitate” and “Do Not Intubate.”

It was that simple.  When I was in medical school, long before there were EMRs, we used to say, “When all else fails, talk to the patient.”  If the people taking care of that old woman had just bothered to ask her family what she wanted before they placed her on the slippery slope of intervention that comes with a bed in the ICU, huge amounts of suffering and expense could have been avoided.  This is an example of how a simple EMR checklist, by reminding providers to ask a question and document the answer, could have been a tremendous boon to the quality of care.  If only the professionals had used it.

Unfortunately, the electronic medical record, with its endless checklists and cut-and-pasted gobbledygook, too often gets in the way of asking the sorts of questions and documenting the answers that are crucial to caring for a patient.  Ethics consults are not a billable medical service.  Patty can afford to ask open-ended questions because nobody in the business office cares how many boxes she checks in the EMR when she records a patient encounter.  In general, the more items a provider can document they inquired about or examined, the more the billing office can charge.  If a doctor clicks to indicate they have asked about urinary burning and poked the belly of the patient, that counts as one system queried and one examined.  On the other hand, there is not an box to check that indicates a bone marrow transplant patient is so concerned about his 8-year-old daughter who has missed a week of school because of a cold, compounded by worry about her father and conflict with the grandmother who’s caring for her, that he’s threatening to leave the hospital and return home immediately, in spite of the increased risk of acquiring a fatal infection on the outside.

My friend can type such a story into the EMR or even dictate it and have an automated transcription system turn it into pretty good prose.  She tells me nurses and doctors often go to her notes, written in English, to learn so much more about how their patients are doing than vital signs, laboratory results, imaging reports and lists of checkmarks from the clinical encounter can tell them.  When she needs to know something about her patient beyond the homogenized data that appear in the EMR, Patty actually talks to the patient’s doctor or, even better, to their nurse.

Certainly, we cannot practice medicine without real data.  But if we don’t have the real stories too, we’re being mechanics, not doctors.  People are people, not machines.  What makes us tick cannot be reduced to blueprints.

How to do justice to both data and story is the crux issue for the EMR.  So far I have not seen a good solution on the horizon.  Before too long, I hope, artificial intelligence will get good enough at turning narrative prose into usable data that we can have our story cake and eat the data too.

Beyond the crucial pieces of information that are left out now when we care for people, what scares me most is the way that cramming the process of care into what fits into the schema implicit in an EMR (no matter how detailed the blueprint) transforms how we think about caring for people.  It’s always been hard to get medical students to ask open-ended questions.  I worry that today’s trainees are so comfortable with their eyes on a screen and their fingers on a keypad that it’s harder than ever for them to learn the value of looking a patient in the eye, taking their hand, and asking, “What scares you?” then sitting back and listening for the answer; not to mention documenting that information in a way that is of use to the person working the next shift in the ICU.

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In May 2017 the Boeing Corporation, legendary for the safety and performance of the aircraft it has produced since 1916, rolled out the latest update of its workhorse 737 passenger plane, the 737 MAX.   Seventeen months later, in October 2018, an Indonesian Air flight crashed, killing everyone onboard that 737 MAX.  Five months after that another 737 MAX, this one flown by Ethiopian Airlines, fell from the air, with the loss of all passengers and crew.  A total of 346 people died in these 2 tragic events.

The Boeing 737 MAX is constructed from 367,000 parts, strung together with 10 million lines of computer code.  It’s a wonder that any device this complicated can fly at all, let alone be entrusted with hundreds of lives, day after day, year after year.  Nevertheless, the 737 MAX is a bone-chilling exception to the amazing safety record of modern aviation.  The plane is still grounded, as investigators pour over everything from crash debris to corporate minutes.

Here’s an emerging picture of the 737 MAX disasters, as reported in the December 23 issue of Bloomberg Business Week.  (The story is in Business Week because, needless to say, the loss in money is huge, about $5billion so far; in reputation, it’s incalculable.)  “…the most fundamental breakdown at Boeing may have been a lack of appreciation of how humans respond under stress–both in the machine it was designing and in its own organization.” The pressure to make customer training a profit center and disputes with the pilots’ union over hiring outside contractors amped up the corporate chaos level as the new aircraft was being birthed.  Moving flight simulators from Seattle, where the planes were designed and built, to Miami may have been Boeing’s biggest misstep.  The company put a continent between the engineers who contrive the machine and the flight instructors who observe in their simulators (hopefully almost all) the things that can go wrong when human being meets silicon and aluminum, long before anybody is hurt.

… …better it should be your doctor!

No matter how spectacular the latest disasters, the airline industry does way, way better than the medical industry.  A study published in the medical journal, BMJ, in 2016 estimated that 250,000 Americans die every year from medical error, making it the third leading cause of death, after heart disease and cancer.  Some estimates place the number at over 400,000.  Going with the lower estimate, a quarter-million deaths per year comes to about three 737 MAXes, fully loaded with passengers and crew, crashing every day!

If you think Boeing experienced a certain degree of corporate chaos that contributed to fatal outcomes, you ain’t seen nothing until you’ve stepped into the world of healthcare.  Time after time the electronic systems that ought to foster communication and collaboration among the various people that literally hold people’s lives in their hands don’t even talk to each other.  Even within institutions, systems are too often clumsy and make-work.

Need I tell you that communicating electronically with patients, all of which falls under the rubric of telehealth, is woefully inadequate?  Just think about how many things you can accomplish easily and securely online with your bank or how it is finding and purchasing the airline tickets that best meet your travel needs, compared with how you communicate with your healthcare providers.

Every breakdown in communication increases the likelihood that sub-optimal, harmful or even fatal healthcare events will occur.  If the oncologist (cancer doctor) isn’t informed about what the nephrologist (kidney doctor) is doing, the patient could receive a bigger dose of chemotherapy than their kidneys can handle.  If an office-based nurse practitioner doesn’t know that a person was recently discharged from the hospital after hip surgery the clinician might not know to suspect a life-threatening blood clot in the lungs when the muddled patient calls because they’re anxious.

The technology ought to be the easy part.  Internet protocols are standardized.  Most of what needs to be done can be accomplished with inexpensive devices.  Nearly everybody has a computer and/or a smartphone that can transmit and receive data, including voice (that’s what a plain old telephone does), images and video.  It’s the people that are the hard part; that is, the people individually and as they gang up in institutions.

In order to maintain a market advantage, health system A doesn’t want health system B to get its hands on its proprietary patient data… and vice versa.  One set of doctors uses Mac IOS, another uses Windows.  Managers must decide either to support both operating systems, with added glitches and complications, or else risk disempowering and angering a large segment of their physician clients.  In the interest of “upcoding” (increasing charges) the billing department has insisted that nurses and doctors use checklist templates to record all encounters with patients, detracting from the richness (stories) in the medical record, while alienating the people on the front lines, as well as adding an hour or two to their daily workload.  The medical licensing board in one state insists that every out-of-state doctor who does a telemedicine consult on even a single one of its residents get a full medical license–a tedious, expensive and slow process–no matter that the out-of-state physician may be the best expert to care for that sort of patient or that there is a severe shortage of that specialty in the state.

In healthcare, training simulators are at least a half-century behind where they are in aviation.  To be fair, it’s way easier to simulate a standard machine made of metal and silicon and such than it is an infinitely varied, non-standardized human body.  Still, electronic technology could be a great boon for healthcare quality and safety.  The lowest hanging fruits dangle from strong limbs of well-tested communication protocols and simple devices.  The willingness and structures for collaboration are what’s missing.  It’s killing us.

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