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Wednesday, November 11, 2015

Shards of health care -- the Nuke the Donald update

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

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

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

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

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

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

We'll see. Stay tuned.

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

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

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

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

Untrustworthy information

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

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

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

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

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

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


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

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

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

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

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

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

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

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


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

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

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


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

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

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

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

More to come...

1 comment:

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