"Technology, particularly the technology of knowledge, shapes our thought"

Technology, particularly the technology of knowledge, shapes our thought. The possibility space created by each technology permits certain kinds of thinking and discourages others. A blackboard encourages repeated modification, erasure, casual thinking, spontaneity. A quill pen on writing paper demands care, attention to grammar, tidiness, controlled thinking. A printed page solicits rewritten drafts, proofing, introspection, editing. Hypertext, on the other hand, stimulates yet another way of thinking: telegraphic, modular, nonlinear, malleable, cooperative. As Brian Eno, the musician, wrote of Bolter’s work, “[Bolter’s thesis] is that the way we organize our writing space is the way we come to organize our thoughts, and in time becomes the way which we think the world itself must be organized...”

Some interesting observations near the end of Kevin Kelly's book. apropos, I am reminded of my December 2015 post setting forth "Margalit's Lament."

Are structured data now the enemy of health care quality?

Margalit apparently thinks so. Per my last post, which was an annotated analytical cross-post of Margalit Gur-Arie's provocative post "Bingo Medicine," which was itself first cross-posted at THCB.

the one foundational problem plaguing current EHR designs – the draconian enforcement of structured data elements as means of human endeavor...

People don’t think in codified vocabularies. We don’t express ourselves in structured data fields...

Furthermore, when your note taking is template driven, most of your cognitive effort goes towards fishing for content that fits the template (like playing Bingo), instead of just listening to whatever the patient has to say...

"Draconian enforcement." Gotta love that.

So, is digital health IT is inimical to clinical acumen, and consequently, patient outcomes?
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More Kevin Kelly:

The space of knowledge in ancient times was a dynamic oral tradition. By the grammar of rhetoric, knowledge was structured as poetry and dialogue—subject to interruption, questioning, and parenthetical diversions. The space of early writing was likewise flexible. Texts were ongoing affairs, amended by readers, revised by disciples; a forum for discussions. When scripts moved to the printed page, the ideas they represented became monumental and fixed. Gone was the role of the reader in forming the text. The unalterable progression of ideas across pages in a book gave the work an impressive authority—“authority” and “author” deriving from a common root. As Bolter notes, “When ancient, medieval, or even Renaissance texts are prepared for modern readers, it is not only the words that are translated: the text itself is translated into the space of the modern printed book.”

A few authors in the printed past tried to explore expanded writing and thinking spaces, attempting to move away from the closed linearity of print and into the nonsequential experience of hypertext. James Joyce wrote Ulysses and Finnegan’s Wake as a network of ideas colliding, cross-referencing, and shifting upon each reading. Borges wrote in a traditional linear fashion, but he wrote of writing spaces: books about books, texts with endlessly branching plots, strangely looping self-referential books, texts of infinite permutations, and the libraries of possibilities. Bolter writes: “Borges can imagine such a fiction, but he cannot produce it....Borges himself never had available to him an electronic space, in which the text can comprise a network of diverging, converging, and parallel times.”

A new thinking space
I live on computer networks. The network of networks—the Internet—links several millions of personal computers around the world. No one knows exactly how many millions are connected, or even how many intermediate nodes there are. The Internet Society made an educated guess in August 1993 that the Net was made up of 1.7 million host computers and 17 million users. No one controls the Net, no one is in charge. The U.S. government, which indirectly subsidizes the Net, woke up one day to find that a Net had spun itself, without much administration or oversight, among the terminals of the techno-elite. The Internet is, as its users are proud to boast, the largest functioning anarchy in the world. Every day hundreds of millions of messages are passed between its members, without the benefit of a central authority. I personally receive or send about 50 messages per day. In addition to the vast flow in individual letters, there exist between its wires that disembodied cyberspace where messages interact, a shared space of written public conversations. Every day authors all over the word add millions of words to an uncountable number of overlapping conversations. They daily build an immense distributed document, one that is under eternal construction, constant flux, and fleeting permanence. “Elements in the electronic writing space are not simply chaotic,” Bolter wrote, “they are instead in a perpetual state of reorganization...”

The total summation we call knowledge or science is a web of ideas pointing to, and reciprocally educating each other. Hypertext and electronic writing accelerate that reciprocity. Networks rearrange the writing space of the printed book into a writing space many orders larger and many ways more complex than of ink on paper. The entire instrumentation of our lives can be seen as part of that “writing space.” As data from weather sensors, demographic surveys, traffic recorders, cash registers, and all the millions of electronic information generators pour their “words” or representation into the Net, they enlarge the writing space. Their information becomes part of what we know, part of what we talk about, part of our meaning.

At the same time the very shape of this network space shapes us. It is no coincidence that the postmodernists arose in tandem as the space of networks formed. In the last half-century a uniform mass market—the result of the industrial thrust—has collapsed into a network of small niches—the result of the information tide. An aggregation of fragments is the only kind of whole we now have. The fragmentation of business markets, of social mores, of spiritual beliefs, of ethnicity, and of truth itself into tinier and tinier shards is the hallmark of this era. Our society is a working pandemonium of fragments... [Kevin Kelly, Out of Control, illustrated edition, pp 387-391]

"Shards." Yeah. As in "Shards of health care. Fragmentation." A lot of us are not finding those shards very useful or comforting. Are we gonna get to true "interoperability" in the health care space anytime soon? Or will we remain mired in digital silo fragmentation and "Interoperababble" owing to continuing/increasing industry "fragmentation" wrought by powerful incumbent market forces?

Reflections on "ways of thinking" here at KHIT focus as a priority on clinical cognition and judgment, and on the workflow realities that may negatively impact them (much of which have little to nothing to do with infotech -- digital or analog -- per se).

"Out of Control" was published 22 years ago, in 1994 (and is a great read; I bought the hefty Amazon oversized softcover edition). It will be interesting to see what his thoughts are in his upcoming release "Inevitable." See my prior post "Anything that CAN be tracked WILL be tracked." Inevitable Tech Forces That Will Shape Our Future.

Interesting quick post over at Medium:

mo’ data mo’ problems?

Think about it.

Your phone carrier knows who you are talking to. Uber knows where you are going. Facebook knows who your friends are. Amazon knows your purchase habits. Fitbit knows how much you exercise. etc. etc. etc.

Your entire life is producing data. You are the product.

Is this a good thing? Well, the short answer is it depends...

Yeah. My comment:

“When you use a free online service, you’re not the customer, you’re the PRODUCT.” From my latest riff on my KHIT.org blog (I think I was quoting either Dan Lyons or Douglas Rushkoff at that point).

Much more to come on that topic shortly. Kevin Kelly asserts that “whatever CAN be tracked WILL be tracked.” But, not withstanding its ostensible inevitability, the propriety of that, as you note, will depend on who’s doing the tracking, and for what purpose. Who benefits, and who is put at risk?

I recently covered a medical infotech conference amid which one presenter showed his fatuous “app” that purports to calculate an AI-enabled machine-learning social media based adaptive “health score,” sort of akin to a FICO credit score (all totally unregulated, of course). What could possibly go wrong there? Similarly, would you like to have, say, Facebook calculating (and sharing with the Feds), without your knowledge or consent, your “Terrorism Risk Score?”

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BTW, COMING UP

Link here. They approved my press pass again. I covered it last year, in Dallas. It was fabulous.

ERRATUM

LOL.
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More to come...

Shards of health care, continued

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

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

Until late this week. Relatively minor things, but frustratingly head-scratching nonetheless.

But, first, backing up from that a few days. I went to Walgreens earlier in the week to pick up my two long-time maintenance meds refills. My co-pay came to "$0.00." I can only surmise that I've hit my BCBS/RI $4,600 max OOP for the year. I joked that "I'm going to go see every doctor in Contra Costa County between now and December 31st." Seriously, though, I've now found a new PCP, and will see him on November 19th, at which time I will see about getting full-panel bloodwork and UA done straight away (I will not be using Theranos).

Thursday a bill arrived from "John Muir Medical Imaging" (a 3rd party imaging vendor independent from Muir) from whom I'd not heard since they screwed up the billing on my July endo-rectal coil MRI, regarding which they'd sent me a bill for $2,925, asserting that my insurance claim had been denied. Turns out they'd used wrong physician order number to submit the initial claim. They then informed me they'd re-submit, and not to worry about it. "Just ignore the bill."

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

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

$9.60

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

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

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

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

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

Right.

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

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

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

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

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

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

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

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

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

I posted my reaction a bit later on the Walgreens Facebook page (I've found that publicly rubbing vendors' noses in their BS on social media typically works better than going through their "customer service" web and phone channels).

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

This little episode will also go on my blog, at KHIT.org, where I chronicle my misadventures in the healthcare system from time to time ("Healthcare Shards") during the course of my writing about health information technology issues.

In less than an hour, there was a response.

Hello Bobby, I am very sorry to hear of the trouble that you've experienced. I've documented your concerns and forwarded this information to management for review. If you'd like to receive a response, please Private Message your contact information. Thanks -Monica

To which I replied.

My contact information is quite public. My principal email is bobbyg@bgladd.com. My home phone hard line is already in your system. My cell phone number is [xxx–xxx–xxxx]. It is now nearly 6 PM on Friday evening, I guess I will not be hearing from Walgreens in time to pick up this prescription tonight. I am not happy about this. I held off going with this prescription as long as I could, but now I feel like I need it. But, owing to the indifference of one of your employees, I will have to do without it for yet sometime to come. This issue could have been proactively resolved by a simple phone call when it became noted that the date was missing. A phone call would have taken less time than putting together and sending a fax and then waiting for and processing a reply.

To which they responded, also on Facebook:

Thanks for the information @ Bobby Gladd. I've updated your case with; your contact information and your feedback and asked for a response as soon as possible. - Belinda

Since then, crickets. No phone calls, nothing in my Walgreens portal in-box.

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

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

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

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

I'm not making that up.

"Can I just drink it?" I joked.

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

"Won't pay for the injection."

Lordy.

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

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6 PM SUNDAY UPDATE

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

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

Nope. "The pharmacy is now closed."

My wife's advice?

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Everyone who has to engage the health care non-system as a patient has his/her tales of frustration (recall my citing of Steve Brill?), even a prominent physician like The Incidental Economist's Aaron Carroll, MD.

Trapped in the System: A Sick Doctor’s Story
September 23, 2015 at 8:00 am, Aaron Carroll

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

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

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

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

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

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

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

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

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

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

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

It’s at this point that I try to get in touch with my doctor, previously through a phone message, and more recently through an online site. If I’m lucky, which usually isn’t the case, the doctor will already have the lab results. If not, I have to go back to the lab and beg it again to fax over the results...

Read the entire article. See also his follow-on post "Answers to your questions about “Trapped in the System: A Sick Doctor’s Story”."

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

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WALGREENS POSTSCRIPT 

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

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

"Bye. Have a nice day."

Whatever. Not that I needed or wanted a "consult."
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More to come...

Shards of health care -- the Nuke the Donald update

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

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

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

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

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

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

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

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

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

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

Untrustworthy information

When people are diagnosed with cancer, they are vulnerable and desperate. They look for information and are likely to find cookbooks, miracle stories, alternative medicine, and “forbidden cancer cures.” Their friends bombard them with advice. Most of those sources “offer hope to people when they need it most, but have earned no right to do so..."

That all rings so true to me. Recall my "One in Three" essay.

One in three
The statistics (of which I had been blissfully unaware despite having recently worked as a Medicare analyst) reveal that one in three of us will at some point come to deal with cancer, either as a patient, or as an immediate family member of one. Cancer is a disease of such subliminal dread as to induce an ongoing denial while we are healthy and not having direct contact with a cancer sufferer. We'd just as soon not think about it, thank you.

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

I also finished this excellent book, and will be reporting on it ASAP.

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

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

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

apropos of the topic, I read this in my New Yorker yesterday.

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

BY MICHAEL SPECTER

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

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

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

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

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

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

Very interesting piece. Read all of it.

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

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

ERRATUM:
DIFFERENT DAY, SAME BOBBYG INTEROP RANT

My reaction to a THCB post entitled "Interoperability: Faster Than We Think – An Interview with Ed Park"

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

The other thing Mr. Park leaves out of the IEEE interop definition clause “without special effort on the part of the customer.” By “defining interoperability down,” we really could simply declare victory and go home, given that virtually all mainstream EHRs have report-writing functionality that can burp out PDF and XML documents to send as secure attachments — i.e., “data exchange,” materially differing little from faxes.
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“…the next advances in interoperability from a technical perspective will not and cannot be legislated. One of the analogies for interoperability, which I find to be a useful starting point, is the thread to a light socket. So everyone got together and decided that there’s one way to build a light socket and everyone conforms to that. Or that there’s one thread to a fire hydrant. That’s a famous example. “If everyone just standardizes the way that hoses connect to fire hydrants then we could have saved that city.” That’s a standard way of looking at interop…”

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

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

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

http://regionalextensioncenter.blogspot.com/2015/10/interoperability-we-dont-need-no.html

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More to come...

Shards writ large

"Shards," indeed.

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

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

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

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

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

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

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

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

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

And so it goes.

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More to come...

Medical Progress: Looking back, looking ahead.

As I have noted before, this blog began in 2010 principally to serve as as a chronicle of my involvement with the then- just-deployed federal Meaningful Use program. But, given my ineradicable contextual big-picture interests, the posts have ranged far and wide topically, spanning the breadth of more or less overlapping subjects surrounding "mere" Health IT (itself inclusive of a number of areas such as "usability" and the vexing misnomer "interoperability"): ePHI security and privacy (including the dense requirements of HIPAA), intellectual property, the Byzantium of our healthcare economics (including the durably-contentious PPACA and the recent hot area of venture capital-fueled health apps "innovation"), clinical pedagogy, medical science, the so-called "Art of Medicine," organizational culture (most notably, though not exclusively, as it impacts patient safety), process QI initiatives such as Lean, Six Sigma, and Agile, and the confounding multifaceted "Upstream."

I thought it a good time to reflect on some history, particularly in light of my recent post on the incipient, ostensibly "transformative" boom in applied "Omics" science.

Fifty years ago this month, when I was an exuberant living-the-dream 19 yr old guitar player performing with the veteran "Hollywood Argyles" at The Beachcomber nightclub on the boardwalk in Seaside Heights, NJ, this opinion piece appeared in JAMA.

August 16, 1965

Of Science, Humanism, and Medicine

The school of Hippocrates established the course of modern medicine when it discarded the magic of previous centuries to base its teaching on observation of the patient at the bedside. Essential unit of medical practice was what later became known as the consultation, described by English clinician Sir James Calvert Spence as “...the occasion when, in the intimacy of the sick room, a person who is ill, or believes himself to be ill, seeks the advice of a doctor whom he trusts. This is a consultation and all else in the practice of medicine derives from it.”

After  many intervening changes, a further revolution developed in the 19th century when science and technology effectively invaded clinical medicine. In the 20th century, the Flexner report revolutionized medical education and stimulated the establishment of full-time clinical departments. Medical thinking became permeated by new, rapidly developing technology, and medicine moved into the Age of Science. Today, the laboratory test in the clinical experiment have too a large degree supplanted the consultation is the essential unit of medical practice. Family–doctoring and even consulting practice have come to be regarded as comparatively inferior pursuits in which the truths of science have not yet come to full bloom.

The scientific explosion of the century has brought incalculable benefit to the progress of medicine. Research institutions under full-time staffs give promise of being the instruments of even greater scientific discovery in the future. Yet, there is cause for concern in this new climate of opinion  (as authoritative as it is naïve) that has risen from the astonishing success of science in our lifetime; there is danger in the optimistic view that science holds the answers  to all of the problems of medicine, if we can but find them. Other values are made to seem less important. Obscured is the realization that sickness and death are inevitable sequelae of life, that science can never bring to an end human suffering.

Essentially, medicine is at least as close to humanism as it is to science, it is concerned with all that touches on human life and feeling. Medicine must employ science; his horizons are too broad to be in compost by any division of knowledge. The practice of medicine — although it must be buttressed by hospitals and laboratories — is basically an affair between highly educated, highly trained human beings and those who seek their counsel in the privacy of the consultation room. The quality of medical practice depends on the  intensity with which physicians, motivated by humane feelings toward their patients, apply their knowledge and experience to the particular problem at hand. The proper concern of medicine’s people, not things; human life and values, not an anatomy and physiology. Practitioners must be guided by the cold light of science; and if they are to do their best, they must feel warmth and fulfillment in applying their knowledge to the problems of individuals.

It is unfortunate that a schism exists between academic medicine and medical practice at a time in history when social and economic forces portend a further medical revolution which, although primarily concerned with the distribution of medical services, has serious implications for medical progress. “The Obsolescence of the Practitioner–Teacher”… Attempts to stimulate every unification of the ranks of physicians. The profession must guide its way into a future that will not have sacrificed the best of its heritage.
JAMA. 1965; 193 (7):610

Interesting, no? In some ways, the more things change, the more they remain the same. See my December 2014 “The art of medicine consists of amusing the patient while nature cures the disease.”
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UPDATE: I've just finally had my Calypso Beacon prostate implants done (after several weeks' delay), for my upcoming IMRT tx. That did not go particularly well. The urologist had difficulty getting a clear view prostate image with the rectal ultrasound probe, and the px took a long time to complete. I don't think he does a lot of these. He even alluded to not having "done this lately." Maybe that's my Bad; I probably should have asked. I had been told by his MA that "it won't be as bad as the biopsy."

Wrong. the biopsy px was a piece of cake compared to this transient bit of torture. I was wishing I'd brought a change of shirts. I soaked the one I was wearing.

I joke that "I feel like I have Toby Keith's boot up my ass."

Whatever. It should be relatively easy from here on.

Side note: Monday I called the urology clinic to verify my Tuesday Calypso implants px appointment and their Oakland address. "No, we don't show any upcoming appointments for you ... wait, let me check ... OK, we're changing our computer system, and your appointment is still in the old one."

They're migrating from NextGen to Epic. 30 minutes later I got an email notifying me of a new message in my Muir portal inbox. I logged in. It was advising my of my next day's urology clinic appointment.

Shards.

On the continuing BCBSRI EoB follies. This latest is a real head-scratcher.

Click to enlarge. So, ZERO dollars billed to the insuror by anyone, yet BCBSRI nonetheless paid $10.64 to someone, for something, and my coinsurance amount for this phantom remittance is $1.17? The EoB page 2 detail tabulation lists a bunch of my November 2014 orthopedic PT encounters at the Brentwood facility (long since settled, and regarding which I apparently overpaid back many months ago by $123.16). None of the subtotals and totals add up. Not even close.

Another EoB dated the next day (07/23/15) also showed up in the mail along with this one, stating that my OOP met (Out Of Pocket) for 2015 is in fact not zero, but I have a max OOP balance of $986.92 (which, no doubt, my IMRT tx will zero out).

In the words of President-elect Donald Trump®, "these people are stupid!"

This is one reason why we in the U.S. pay double. This kind of stuff is pure Steve Brill.

BUT, WAIT! THERE'S MORE!

Sometimes I get to thinking that the folks at BCBSRI should be designated a Protected Class under the ADA. I just got a bill from "John Muir Magnetic Imaging." $2,925.00 for my July 9th endo-rectal coil MRI. Full retail balance. "Due upon receipt."

I logged into the BCBSRI subscriber portal.

At least this time it shows up.

That's it. No additional information detailing the justification rationale for the claim denial. No idea what "UM" refers to. "Utilization Management"?

I responded in their "secure messaging system."

Click to enlarge if necessary for reading clarity.

Let's recap: first, they denied my post-biopsy sepsis hospitalization claim, on the negligently erroneous grounds that I was "no longer insured" (they'd used my expired 2014 subscriber ID, still floating around somewhere in Muir's database -- notwithstanding that I'd handed over my active 2015 card at the hospital when I went in for the sepsis tx. Then they flubbed the ER doc group's separate "independent contractor" claim for $623. It finally got processed and paid some 90 days out, after a bunch of emails and phone calls. I was on the hook for about $45 of that in the end. The reason for that bumbling has really never fully clarified. In part some, stupid, dissembling beg-off crap about a mismatch between my wife's Walnut Creek P.O. box (where her BCBS mail goes) and our Antioch street address.

Look; you have my full name, my DoB, my Social, and my BCBSRI Subscriber ID, don't try to play me with this "no-match" baloney. I've been around IT too long.

With respect to this latest CusterFluck, recall, if you've followed my "shards" posts, that BCBSRI, via their "EviCore" auth review vendor, initially denied pre-auth for the endo-rectal coil pelvic/prostate MRI, which was subsequently overturned on appeal. Muir refused to even schedule me absent an auth. It was eventually approved, and the px was performed.

But, now, they refuse to pay for any of it.

It almost smacks of fraud. More charitably, though, chalk it up to bureaucratic incompetence? 'eh?

Shards. Sand in the gears.

So, come Monday morning I will surely again be at length on the phone in "please hold; your call is important to us" mode, wasting my (unpaid) time trying to rectify this so that the MRI provider gets paid, without my being backed up into the coercive threat of a "past due collections" action.

UPDATE: Monday morning I called the Muir Imaging payment center to apprise them of the issue, and also had some "secure messaging" interaction on the BCBSRI portal. The latest reply:

Dear Robert Gladd, Thank you for the additional information. I have spoken with Dr. Xxxxx's office, and I am waiting for a return call from them, as they needed to access some records that the person that I spoke with could not access. They have promised me a return call by the end of day on Wednesday. I will reply via secure message after I have spoken with them. Thank you for your patience.

Dr. Xxxxx is the Radiation Oncologist at Stanford who ordered the pelvic/prostate endo-rectal coil MRI, sent electronically to Muir. Precisely why BCBSRI needs to contact him again escapes me. His px order is on record. The initial denial by their px/tx review subcontractor EviCore is on record. The appeal and subsequent denial reversal by EviCore is on record. The pre-auth is on record. The MRI was scheduled and performed. All a matter of record. A record that should be right there in the BCBSRI data.

I don't get it. there's no un-ringing this bell. What are we gonna have now? A "post-authorization" denial?

Refrain: This is why we pay double.

FRIDAY UPDATE

My query is on the bottom. The CS Rep response is atop that.

So, Muir Imaging used the wrong code in their billing submission. And, the data processing amnesiacs at BCBSRI looked no further -- which, I guess, plays to their advantage. Work the float for at least another billing cycle.
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Next up for me? A CT imaging "targeting / tx planning" encounter at Rad Onco on Tuesday, after which I will commence 9 weeks of Calypso M-F IMRT, probably 2 weeks following that session. Should BCBSRI remain true to form thus far, I expect there will be more bozo stuff to report.
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IN OTHER NEWS

Recall my recent citing of this book?

It will be released on Tuesday August 25th. Can't wait to get it and study it. It was just the topic of a NPR "Fresh Air" segment.

MONDAY MORNING UPDATE

While I await tomorrow's release of "Machines of Loving Grace," yet another book on the topic has hit my radar. Just downloaded it.

Have yet to read it, but here's a snip from a quick keyword search:

The days of the “country doc” are long gone, but information technology is also transforming the character of medical practitioners in surprising ways.

The main shift is a growing recognition that the medical arts are not arts at all but a science that is better driven by statistics and data than intuition and judgment. In bygone eras, it was at least plausible that someone could absorb a reasonable proportion of the world’s medical knowledge and apply it to cases as they are presented. But over the past half century or so, as it became clear that the avalanche of research, clinical trials, and increased understanding of how our bodies (and minds) work was beyond the comprehension of a single individual, the field fractured into a myriad of specialties and practices. Today, your “primary care physician” is more of a travel agent to the land of specialists than a caregiver, except for the simplest of ailments.

But the hidden costs of this divide-and-conquer approach to medical care are about to become painstakingly clear. Coordinating the activities of multiple practitioners into a coherent plan of action is becoming increasingly difficult, for two reasons. First, no one has the complete picture, and, even if they do, they often lack the detailed knowledge required to formulate the best plan of action. Second, specialists tend to treat the specific conditions or body parts that they are trained for, with inadequate regard for the side effects or interactions with other treatments the patient may be receiving. For me, the practice of medicine today conjures the image of a Hieronymus Bosch painting, with tiny, pitchfork-wielding devils inflicting their own unique forms of pain.

As a patient, you would ideally prefer to be treated by a superdoc who is expert in all the specialties and is up to date on all of the latest medical information and best practices. But of course no such human exists.

Enter IBM’s Watson program. Fresh off its Jeopardy! victory over champions Brad Rutter and Ken Jennings, Watson was immediately redeployed to tackle this new challenge. In 2011, IBM and WellPoint, the nation’s largest healthcare benefits manager, entered into a collaboration to apply Watson technology to help improve patient care. The announcement says, “Watson can sift through an equivalent of about one million books or roughly 200 million pages of data, and analyze this information and provide precise responses in less than three seconds. Using this extraordinary capability WellPoint is expected to enable Watson to allow physicians to easily coordinate medical data programmed into Watson with specified patient factors, to help identify the most likely diagnosis and treatment options in complex cases. Watson is expected to serve as a powerful tool in the physician’s decision making process.” As with its original foray into AI fifty years ago, IBM is still cautious not to ruffle the feathers of the people whose rice bowls they are breaking, but one person’s decision process support tool is another’s ticket to the unemployment line.

No one likes the idea that his or her field is simply too big and fast moving to master. And doctors in particular aren’t likely to graciously concede control of their patients’ treatment to synthetic intellects. But eventually, when outcomes demonstrate that this is the better option, patients will demand to see the attentive robot, not the overworked doctor, for a fraction of the fee, just as many people would now rather have an ATM than a human teller count out their cash.

Kaplan, Jerry (2015-08-04). Humans Need Not Apply: A Guide to Wealth and Work in the Age of Artificial Intelligence (Kindle Locations 1738-1764). Yale University Press. Kindle Edition.

See my July 20th post "AI vs IA: At the cutting edge of IT R&D."

Also apropos, Margalit Gur-Arie has a fine new post up.

Measuring the Doctor-Patient Relationship

...Although there is ample rhetoric about the doctor-patient relationship and patient-centered everything, much of what we do in health care today is in stark contradiction ... Patient choice is being curtailed by a bewildering array of narrow network health plans and wholesale clinical decisions made by corporate CEOs. Competence is being redefined to include care provided by non-physicians, non-clinicians, and algorithmic software. Continuity of care is being discouraged in favor of cheapness, convenience and continuity of medical records, while conflict of interest is inherent in all so called value-based arrangements. Compassion has been scripted by marketers, and communication, precisely codified for the eclectic, self-managing, highly educated, financially secure, and largely healthy, patient segment, has become the second most important factor defining the interaction between patients and the health system. The premier factor is of course, access to all of the above...

And then there's this, from NEJM:

The Paternalism Preference — Choosing Unshared Decision Making
Lisa Rosenbaum, M.D.

...Clearly, patients should have access to all available information, from their medical records to anticipated costs of care. But that it's wrong to deny anyone information doesn't make it right to always provide as much as possible. Might there, in fact, be such a thing in medicine as Too Much Information?...

Last March, my friend Paul Kalanithi, a 37-year-old neurosurgeon, died of lung cancer. Writing after his diagnosis, he contrasted his newfound obsession with cancer survival statistics with his struggle to communicate such information to his own patients without destroying their hope. As he struggled to extract from his oncologist precise information about his life expectancy, he realized, “What patients seek is not scientific knowledge doctors hide, but existential authenticity each must find on her own.”

Perhaps we can't provide existential meaning, but the way we share information may exacerbate patients' sense of vulnerability and alienation. When we rattle off a litany of possible risks, say “Please sign here,” and check our watches when the patient says, “Hold on, I need to put on my glasses to read this,” we have neither succeeded in the spirit of patient engagement nor honored anyone's values. But is more information the answer?

In an essay entitled “Arrogance,” published posthumously in 1980, former Journal editor Franz Ingelfinger describes his experience as a patient with adenocarcinoma of the gastroesophageal junction — the area he'd studied for much of his career. As he considered the trade-offs of chemotherapy and radiation, receiving contradictory expert opinions, he and his physician family members became “increasingly confused and emotionally distraught.” Finally, one physician friend told him, “`What you need is a doctor.'” Ingelfinger notes, “He was telling me to forget the information . . . and to seek instead a person who would . . . in a paternalistic manner assume responsibility for my care. When that excellent advice was followed, my family and I sensed immediate and immense relief.”

The doctors I admire most are characterized not by how much they know but by a sophisticated intuition about how best to share it. Sometimes they tell their patients what to do; sometimes they give them a choice. Sometimes, when discussing treatment options, they cover all seven tenets of informed consent. Sometimes, instead, seeing the terror of uncertainty in a patient's face, they make their best recommendation and say, “I don't know how things are going to turn out, but I promise I'll be there with you the whole way.”

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More to come...