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Wednesday, July 18, 2018

The potential promise and peril of reading your full genome


Interesting ARS Technica series underway.
"The cost of full-genome sequencing is falling so quickly and the actionable insights it can reveal are growing fast enough that this data will eventually be as widely collected as cholesterol levels (perhaps within a decade or so)."
Enjoy.

 

"Actionable insights." That's the key.  From Episode Two:
"A tiny fraction of people might indeed make discoveries that are both horrible and unactionable. A larger fraction could suffer anguish from the sheer ambiguity of what’s divulged. After carefully studying both the psychology and consequences of these situations, Robert is fully convinced that personal genetic information should be made available to any adult who seeks it, after being soundly apprised of the ramifications."
ARS Technica is routinely one of my daily priority stops. Always good stuff there. I'll embed the 3rd episode once it's available.

I've had a recurrent go at genomics issues here.
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More to come...

Monday, July 16, 2018

STEMM should get HACD


From my hardcopy Science Magazine that just arrived. "STEMM," Science, Technology. Engineering, Math, Medicine. "HACD," Humanities, Arts, Crafts, Design.
Incorporating humanities, arts, crafts, and design into curricula makes better scientists

If you’ve ever had a medical procedure, chances are you benefited from the arts. The stethoscope was invented by a French flautist/physician named RenĂ© Laennec who recorded his first observations of heart sounds in musical notation. The suturing techniques used for organ transplants were adapted from lacemaking by another Frenchman, Nobel laureate Alexis Carrel. The methods (and some of the tools) required to perform the first open-heart surgeries were invented by an African-American innovator named Vivien Thomas, whose formal training was as a master carpenter.

But perhaps you’re more of a technology lover. The idea of instantaneous electronic communication was the invention of one of America’s most famous artists, Samuel Morse, who built his first telegraph on a canvas stretcher. Actress Hedy Lamarr collaborated with the avant-garde composer George Antheil to invent modern encryption of electronic messages. Even the electronic chips that run our phones and computers are fabricated using artistic inventions: etching, silk-screen printing, and photolithography.

On 7 May 2018, the Board on Higher Education and Workforce of the U.S. National Academies of Sciences, Engineering, and Medicine (NASEM) released a report recommending that humanities, arts, crafts, and design (HACD) practices be integrated with science, technology, engineering, mathematics, and medicine (STEMM) in college and post-graduate curricula (1). The motivation for the study is the growing divide in American educational systems between traditional liberal arts curricula and job-related specialization. “Ironically,” the report notes, “as this movement toward narrower, disciplinary education has progressed inexorably, many employers—even, and, in fact, especially in ‘high tech’ areas—have emphasized that learning outcomes associated with integrated education, such as critical thinking, communication, teamwork, and abilities for lifelong learning, are more, not less, desirable.”

Because the ecology of education is so complex, the report concludes that there is no one, or best, way to integrate arts and humanities with STEMM learning, nor any single type of pedagogical experiment or set of data that proves incontrovertibly that integration is the definitive answer to improved job preparedness. Nonetheless, a preponderance of evidence converges on the conclusion that incorporating HACD into STEMM pedagogies can improve STEMM performance…
…The late Charles M. Vest, president emeritus of the National Academy of Engineering and president emeritus of the Massachusetts Institute of Technology, concurred: “[Engineering] systems cannot be wisely envisioned, designed, or deployed without an understanding of society, culture, politics, economics, and communications—in other words, the very stuff of the liberal arts and also of the social sciences.”
Interesting that they add the 2nd "M" -- "Medicine." 

apropos, I've riffed on "The Art of Medicine" here before.

"Humanities?" See my cite of Dr. Rachel Pearson (MD, PhD in Medical Humanities).


See also my numerous cites of the eloquent, prolific MD writer Dr. Danielle Ofri.


ALSO ON THE SCIENCES AND THE ARTS

NatureVolve.com
I first cited this effort back in April (scroll down). By all means, subscribe and follow.

ON DECK


They gave me a comp review copy.
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More to come...

Thursday, July 12, 2018

The Medical Record: Paper or Pixels?

"It doesn’t matter if you’re a patient, a doctor, a clinical coder or a CEO. It doesn’t matter if a patient’s medical record is paper or pixel, or whether it’s being lifted out of a box in a hospital basement or accessed from thousands of miles away via an app on a hospitalist’s smartphone. No matter how quickly you can get it, the information is of no use if it’s wrong."
Just came across an article on The Huffington Post by science writer Abby Norman:
‘Minor’ Errors In Medical Records Can Have Major Consequences
“Quality” is a buzzword in many industries ― but in health care, it’s lumped in with “safety,” since poor quality can lead to much more than just customer dissatisfaction.

Medical errors are the third leading cause of death in the U.S., according to Johns Hopkins University School of Medicine researchers: Each year, approximately 250,000 patients in the U.S. die due to such errors. But more often than not, medical errors hurt patients in unobvious ways, just as an illness doesn’t always present itself clearly and instead takes root perniciously, over time and under the radar. They’re a sign of a much more severe ailment that plagues our entire health care system.

One place these errors lurk is in documentation and medical records.

As long as people have been practicing medicine, they’ve been keeping records ― if only for the purpose of billing and not necessarily to facilitate continued and coordinated care. Today, medical documentation, whether paper or electronic, serves a number of purposes, facilitating billing and patient care and serving as evidence to help doctors avoid lawsuits (or help patients litigate). 

Though we’ve seen a major push in the last decade to digitize health information and make it more widely accessible to both providers and patients, dreams of the “shared electronic medical record” have been slow to come to fruition.

Why? Because providers and health care systems are being asked to switch to new technology, which requires an investment of finances and time. And if health care providers in this country are short on anything, it’s time…
Good article. Read all of it (linked in the title).


"PAPER vs PIXELS"

The debate rages on, as it has since I first came to do EHR work in 2005 under the QIO "DOQ-IT" initiative ("DOQ-IT" -- "Doctors' Office Quality - Information Technology.")

Based on my long experience (as an analyst, a HIT operative, and a patient), I can assert confidently that "paper is much slower" overall. The relative error rates, however, remain rather unclear -- and empirically complicated by the "shooting-at-a-moving-target" problem.

Beyond those issues, there's Margalit's beef: "Are structured data the enemy of health care quality?" Do digital "structured data" adversely impact the SOAP process?

Workflow efficiency and clinical cognition concerns aside, Abby Norman's piece is about health care data accuracy. Hmmm... what comes immediately to mind? Theranos, perhaps? Beyond that scandal, see my prior post "The upshot of dirty data."

Abby:
"I was recently reviewing my own chart with a nurse before a routine appointment, only to be informed that at some point since I’d last reviewed my records, my chart had been altered to say I had eight sisters, all of whom were in good health. I don’t have any sisters."
Lordy Mercy. Again, read her entire HuffPo article.

Some earlier thoughts of mine going to "data forensics."

"WHO IS ABBY NORMAN?"


Haven't read this. Don't know that I will, but it looks very interesting. The Amazon blurb:

In the fall of 2010, Abby Norman's strong dancer's body dropped forty pounds and gray hairs began to sprout from her temples. She was repeatedly hospitalized in excruciating pain, but the doctors insisted it was a urinary tract infection and sent her home with antibiotics. Unable to get out of bed, much less attend class, Norman dropped out of college and embarked on what would become a years-long journey to discover what was wrong with her. It wasn't until she took matters into her own hands--securing a job in a hospital and educating herself over lunchtime reading in the medical library--that she found an accurate diagnosis of endometriosis.

In Ask Me About My Uterus, Norman describes what it was like to have her pain dismissed, to be told it was all in her head, only to be taken seriously when she was accompanied by a boyfriend who confirmed that her sexual performance was, indeed, compromised. Putting her own trials into a broader historical, sociocultural, and political context, Norman shows that women's bodies have long been the battleground of a never-ending war for power, control, medical knowledge, and truth. It's time to refute the belief that being a woman is a preexisting condition.
My late daughter Danielle was blown off and stonewalled by her new Primary (at Kaiser) for many months. Maybe she'd still be alive. Maybe not. I stew about it episodically.
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More to come...

Monday, July 2, 2018

"Overcharged?" Paying for health care

The publisher (CATO Institute), at the request of one of the authors, graciously gave me a pre-pub comp copy to study and review. The book is to be released on July 3rd.

"Why is the American health care system so dysfunctional and expensive? Why does the EpiPen, containing $1 worth of medicine, cost $600? Why do hospitalized patients receive bills laden with inflated and surprise charges that come out of the blue from out-of-network providers, or that demand payment for services that weren't delivered? Why is more than $1 trillion―one out of every three dollars that passes through the system―lost to fraud, wasted on services that don't help patients, or misspent? What are the causes of spiraling costs, mediocre quality, and limited access?

Overcharged details how the answers to these questions are connected and reveals a system that performs as if it had been designed to spend as much money as it can, and to be as confusing and unfriendly as possible, with no accountability. Overcharged then exhaustively details real reforms―showing how health care can become more efficient and pro-consumer when it is subjected to the competitive forces that apply to the rest of the economy, and will only get better and cheaper when consumers exert pressure from below."
It's a serious (if partisan) book, deserving of serious study and critical analysis. A bargain at $7.99 Kindle price. I find in it much to both agree with and to be skeptical of.

I recently underwent a coronary angiogram px, dx preparatory to my upcoming SAVR px (open heart aortic valve replacement surgery). My "chargemaster" invoice and EoB statement numbers:
Cardiology:  $31,004.00
Laboratory:  $$615.84
Med/Surg Supplies & Devices:  $4,624.00
Pharmacy:  $1,391.20
----
Total:  $37,635.04
Medicare paid $2,667,29 (it's considered a Medicare Part-B outpatient encounter), my residual balance owed was $1,209.44, for a total paid of $3,876.73. Roughly 10.3% of the (BS) "retail."

I was there for about 4 hours, so, roughly a grand an hour, for all of that technology and expertise.

Did I "overpay" to comfortingly learn from my cardiologist that I "have the arteries of an 18 year old?"

"SAVR"

Sometime in the next couple of months, a highly respected and experienced local cardiac surgeon and his team will sedate and anesthetize me, render me deeply unconscious, emplace a breathing tube in my throat, slice open my chest, spread out my rib cage, stop my heartbeat, put me on a heart-lung machine, cut my heart open, remove my seriously stenotic aortic valve, replace it with a sutured-in prosthetic (pig or bovine tissue) valve, close the heart back up and re-start it, close my chest back up, and send me off to Recovery.

One hopes.

The Healthcare Bluebook pegs the current "fair price" for the SAVR px in my area at about $90k.

"Reasonable?"

Back to Overcharged. Per Covey, I "begin with the end in mind."
CONCLUSION
For the last half century, the chief object of American health policy has been to ensure that consumers pay the smallest possible fraction of the cost of medical care at the point at which treatments are delivered. Obamacare, the State Children’s Health Insurance Program, Medicare, Medicaid, the U.S. Veterans Health Administration (VHA), and tax-advantaged private insurance arrangements— along with the long list of coverage mandates that go with them— all reduce direct financial responsibility for medical services to a minimum. As explained in Chapter 15, the evil genius of third-party payment is that it encourages consumption and drives up costs by making medical services cheap for patients at the point of sale.

The public officials, insurers, and health care providers who benefit from all this spending defend third-party payment arrangements by arguing that health care is too complicated and too expensive for consumers to manage on their own, and by contending that people who are directly responsible for health care costs will use medical services less often than they should. Better that government bureaucrats spend tax dollars and that private insurers spend premium dollars, they argue, than that consumers pay for medical services themselves. They don’t want consumers to consider the possibility that market mechanisms might remediate excessive costs and complications as successfully in health care as they have in other sectors. This is to be expected. Widespread reliance on third-party payment arrangements benefits insurers and health care providers, so they want nothing to interfere with it…

…An abundance of evidence, including everything from peer-reviewed academic studies of the impact of Medicare and tax breaks on costs to news reports about surprise bills, retail outlets, and frauds, makes it clear that the politicized third-party payment system is the main culprit. Instead of expanding the reach of that system, as Obamacare did, we should face facts and start paying for health care the same way we pay for everything else. When hundreds of millions of people spend their own money on health care, they will behave differently, and health care providers will too. Consumers will look for services that offer better value for the dollar, and doctors, hospitals, drug companies, and other medical outlets will try to provide them. Prices will fall and both the availability and the quality of medical treatments will improve.

Many health care providers won’t like this new world in which they must compete for business. They benefit from existing arrangements, which pay them whatever they ask and send them more dollars year after year. We should stop indulging them, and we should stop listening to their apologists and lobbyists too. Markets do a good job of supplying food, clothing, housing, transportation, and other essentials. They can help us meet our needs for medical treatments.

One of the most wonderful things about markets is that they automatically reward sellers who treat consumers well and automatically punish those who don’t. Both the carrot and the stick are important. For American health care to improve, providers that deliver high-quality services at reasonable prices must be rewarded and inferior providers must fail. There must be turnover and opportunities for new entrants. A near-death experience made the American automobile industry more efficient and pro-consumer, and decades later, innovators like Tesla are still forcing existing manufacturers to do better by deploying new technologies and business models. If and when the businesses that operate in the American health care sector are subjected to intense competition, they will respond the same way. And if they don’t, they will fall by the wayside and new businesses will emerge that will offer Americans cheaper and better health care.

Change won’t come easily. Old-line health care companies have rigged the game in their favor. They benefit from a guaranteed flow of dollars and massive subsidies. They control market entry. And they have convinced the American public that they should not have to operate like other businesses…


Charles Silver & David A. Hyman. Overcharged: Why Americans Pay Too Much for Health Care (Kindle Locations 7253-7295). CATO Institute.
 
That is the crux of their argument.

Which begins thus:
PREFACE
The problems with America’s health care system are many and varied. That’s why there is no general guide to all of them. Instead, there are thousands of books and articles about specific difficulties, such as the mistreatment of prostate cancer in men, the politics of health care reform, outrageous hospital charges, or fraud in the prescription drug business.

Although many of these writings are excellent, they fail to convey a sense of the whole. An intelligent person wants to know, at the most general level, why our health care system is so dysfunctional. What are the root causes of spiraling costs, mediocre quality, and limited access? Why is more than $ 1 trillion— one out of every three dollars that passes through the system— lost to fraud, wasted on services that don’t help patients, or otherwise misspent? Why do hospitalized patients receive bills that are laden with inflated charges, that come out of the blue from out-of-network providers, or that demand payment for services that weren’t delivered? Why does the EpiPen, an old technology that contains $ 1 worth of medicine, cost $ 600? Do questions like these require separate answers? Or are the answers connected? Are there core drivers of the health care system’s many pathologies?

We believe that an array of the American health care system’s most important shortcomings stem from a few root causes. We also think that it is important to lay these fundamental drivers bare for everyone to see...
[ibid, Kindle Locations 43-53]
 Between these bounds lie 22 chapters fully laying out their argument and supporting evidence. to wit:
The United States is “the most expensive place in the world to get sick.” 1 Why? One big reason is that providers routinely game the payment system. Drug companies are experts at this. Chapter 1 describes how they first gain strangleholds on supply. Chapter 2 describes how they then charge whatever they want, knowing the payment system imposes no restraint on prices. Chapter 3 shows that shady conduct occurs at every point in the drug distribution chain and often involves the willing participation of pharmacists and physicians who profit by exploiting existing payment arrangements. It is easy to see why spending on prescription drugs, new and old, has gone through the roof.

Doctors game the payment system too. As Chapters 4 and 5 show, they deliver an ocean of services that patients don’t need, such as excessive numbers of stents and cesarean deliveries. Chapter 6 describes how doctors regularly perform treatments that haven’t been proven to work, many of which are found to be ineffective or harmful when they are finally studied with care.

Chapter 7 explains how public officials get in on the action. In return for sizable campaign contributions from health care providers and their lobbyists, they let the flow of cash into the health care sector continue and look for ways to increase it. When the campaign contributions are large enough, elected officials even go to bat for corrupt providers who face fraud investigations.

Some hospitals and doctors aren’t satisfied with excess payments for garden-variety overuse and unnecessary care, and they turn to a life of crime— or at least abuse. Chapter 8 explains how hospitals “upcode” treatments, invent secondary conditions that patients don’t have, and concoct phony bills. Chapter 9 shows how hospitals also conspire with doctors to maximize their revenues by capturing differences in payments based on the site of service, tacking on absurd charges, and gouging patients who are uninsured or treated by out-of-network physicians at their facilities. Chapter 10 describes how hospices, nursing homes, and home health care services play similar games and frequently charge for services that were never delivered.

Chapter 11 shows how some doctors operate pill mills that supply the street with dangerous drugs— likely contributing to the rising death toll from overuse of prescription narcotics. Ambulance companies and durable medical equipment suppliers cheat the system regularly too, as do domestic and international criminal gangs. As Chapter 12 explains, there are far too many malefactors for the police to catch. For every one police put away, two more pop up. That is why the same types of fraud succeed again and again and again.

Chapter 13 explains that the quality of health care is often dangerously low because the payment system pays providers regardless of how well or poorly their patients fare. In fact, it often doles out more money to providers when patients experience complications than when they get well. Chapter 14 explains how incumbent health care providers have stifled competition so successfully that the government has to pay them extra to improve. In other industries, competition forces existing business to bear the costs of improving their products.

Although there have been repeated attempts to address these problems, all have failed because they have not changed the core incentives driving the system. We address that problem in Part 2...
[ibid, Kindle Locations 542-570]
And so on.

I found this interesting:
Academic research on health care, of which there is an enormous amount, presented other challenges. In a book of this type, which is intended to provide a coherent, high-level account of the entire health care system for a general audience of intelligent readers, we can discuss only general themes and the leading works that develop them. And we cannot go into even those works in much detail. We therefore strove to set out the basic insights and most important findings, and to do not much more than that. Readers who want to read the literature in greater depth are welcome to begin their journey by using the many citations we provide. [ibid, Kindle Locations 95-100]
Yeah.
Candidate Trump: "You're going to have such great health care, at a tiny fraction of the cost, and it's going to be so easy."
 

President Trump: "Who knew health care could be so complicated?"


I am reminded of a number of other health care policy writings I've studied across the years,
beginning with my 1994 grad school "argument analysis and evaluation" semester paper of the JAMA Single Payer proposal article (pdf). More on that paper here.

More stuff:


Ugliest book cover "art" ever. See this post.

More...




And, multiple cites of Einer Elhauge -- the "Allocating health care morally" guy (pdf).
Health law policy suffers from an identifiable pathology. The pathology is not that it employs four different paradigms for how decisions to allocate resources should be made: the market paradigm, the professional paradigm, the moral paradigm, and the political paradigm. The pathology is that, rather than coordinate these decisionmaking paradigms, health law policy employs them inconsistently, such that the combination operates at cross-purposes. 

This inconsistency results in part because, intellectually, health care law borrows haphazardly from other fields of law, each of which has its own internally coherent conceptual logic, but which in combination results in an incoherent legal framework and perverse incentive structures. In other words, health care law has not-at least not yet-established itself to be a field of law with its own coherent conceptual logic, as opposed to a collection of issues and cases from other legal fields connected only by the happenstance that they all involve patients and health care providers. 


In other part, the pathology results because the various scholarly disciplines focus excessively on their favorite paradigms. Scholars operating in the disciplines of economics, medicine, political science, and philosophy each tend to assume that their discipline offers a privileged perspective. This leads them either to press their favored paradigm too far or to conceptualize policy issues solely in terms of what their paradigm can and cannot solve.
Instead, health law policy issues should be conceived in terms of comparative paradigm analysis. Such analysis focuses on the strengths and weaknesses of the various decisionmaking paradigms, determining which is relatively better suited to resolving various decisions, and then assigning each paradigm to the roles for which it is best suited. It is from this comparative perspective that this Article analyzes the promise and limits of the moral paradigm for allocating health care resources…
I have more cites, but those are enough for these purposes. Again, a macro-level health econ policy SME I'm not. My relative expertise, as I've noted before, is principally limited to domains such as InfoTech, workflow/process QI (big-time Lean advocate), and HIPAA.

We rightfully expect (and get) continuous improvements in health care / bio-med technology. We know dispositively that scientific process QI methods such as Lean continue to bear significant fruit (notwithstanding being confined within a chaotic health care economic environment). Were we to apply such methodical "customer-value-add" thinking to the administrative / financial side, what might we accomplish? Is the only way to get there removal of payor intermediaries?
Defining "customers" is a significant sand-in-the-gears obstacle, I know. So many "stakeholders" (as the authors and numerous others point out) beyond patients, many of them with inordinate incumbent market clout -- abetted by (margin-correlated) opacity and barriers to entry.
SOME RANDOM "OVERCHARGED" BULLET POINT THOUGHTS
  • I have long irascibly asserted that "no amount of calling 3rd-party (mostly for-profit) intermediated, dubious value-add pre-payment plans 'insurance' will make them so." These authors give that assertion a good confirmatory airing. Insurance is properly a risk-vetted hedge against catastrophic loss. It maked me crazy that so many don't get this.;
  • I have abiding skepticism that the (conflated phrase) "free markets" comprise a uniformly beneficent way to structure socioeconomics. For one thing, let's not confuse "private markets" with "free markets." All human activity gets regulated one way or another. On this point, Google "Gresham's Dynamic." Anyone still recall the 2008 financial crash? Central to the argument here is that assertion here is that the health care space is "just another consumer market" and will function optimally without "government meddling." I have serious skepticism that a direct-cash-pay price for my upcoming heart surgery would be materially less than the ~$90k Bluebook "fair price" any time soon -- and all I have at this point is "soon.";
  • Also in that regard, the authors recommend that people might "finance" big-ticket acute care encounters beyond their cash-on-hand means (such as, e.g., say, my pending SAVR px -- though I actually, luckily could pay for it OoP). What could possibly go wrong there? As someone who did a lengthy stint in subprime risk management, I have some views on that idea. (apropos, not too long ago, at WinterTech, some VCs were speaking of indeed looking at opportunities in the private "medical financing space.");
  • The authors tout the potential of "medical tourism." Interesting. I seriously looked at going to Germany or Switzerland to pay cash for a "TAVR" px rather than the open-heart valve job I've decided on; 
  • Two dozen cites regarding "EHRs," almost all of them negative (largely re: "Meaningful Use" so despised by "conservatives");
  • "Singapore" as an exemplar? Seriously? Dunno; never been there. Neither have I been to Scandinavia (often cited as universal coverage successes), in fairness;
  • Really didn't care much for the "intergenerational 'warfare' / reverse Robin Hood" assertions. Is a "commonwealth" really only legitimate within the confines of short-term transactionalism?
  • When did it become a "conservative" idea to simply give people "vouchers" via which to buy private market health care? (Or, "school choice," etc?). Central to the CATO Liturgy is that "subsidies distort markets." And, yeah, lots of truth there broadly. The "benefit" of my home mortgage deductability has to be (invisibly) baked into the house's "market value." It has to really be a net wash;
  • But, tangentially related to the foregoing point, the writers cite the comparative examples of Social Security vs, Medicare. I'm am now a Social Security and Medicare bene. I get a fixed SS amount each month, and it's up to me to decide how to spend it. Overcharged posits that Medicare should be no different. Any problems there? 'eh?
I find the authors' assessment of the core dysfunctions of our "fragmented" health care "system" rather spot-on (a lot of it is not exactly news to me; see my other book cites, and prior postings). Nonetheless, I have to have concerns about the broad ("equal access") viability of their proposed "market solutions." But, I'm still burrowed deep in the book -- which I heartily recommend, irrespective of your policy positions. More as this Grasshopper learns more.

I'd love to have reactions from my pal, medical economist J.D. Kleinke on this stuff.

 

JULY 8TH UPDATE
Do poor people have a right to health care?
NY Times Editorial Board


The 16 Kentuckians who recently won a lawsuit challenging the legality of Medicaid work requirements include a law student with a rare heart condition, a mortician with diabetes, a mother of four with congenital hip dysplasia and a housekeeper with rheumatoid arthritis. It’s a mixed bunch, united by two grim facts: They live at or below the federal poverty level, and they’re caught in the cross hairs of a debate over what society owes its neediest members.

Their lawsuit argued that insisting that people work a certain number of hours a month in order to receive Medicaid benefits, like other requirements the state was planning to demand, is illegal because it runs counter to Medicaid’s purpose — to ensure that low-income people have access to decent care. The lawsuit also contended that such requirements would imperil the plaintiffs’ health by depriving them of the only medical insurance they could afford. The new rules, which would have stripped recipients of their benefits if they failed to meet monthly hours-worked quotas and strict reporting standards, were simply oblivious to the realities of low-wage living in Kentucky, and America in general…

…the latest salvo in a protracted national reckoning over Medicaid, a program that has been in place for more than half a century and now insures one in five Americans, or roughly 74 million people. In January, the federal government announced that it would reverse decades of precedent and allow states to tie Medicaid coverage to work requirements. The move is part of a wider conservative-led campaign to restrict the number of people who benefit from social safety-net programs. It also reflects persistent national ambivalence over the question of whether health care is a human right or an earned privilege — and, if the latter, how “earned” should be defined…

…the basic ideological argument for work requirements — that people should earn their government benefits — collapses under scrutiny. Numerous analyses have indicated that a clear majority of Medicaid recipients who can work already do work. Of the 9.8 million working-age Medicaid recipients who are not employed, the vast majority have physical limitations or provide full-time care to young or elderly family members; just 588,000 of them are able to hold jobs but are currently unemployed, according to a 2017 report. And most of those are actively looking for work…

…it would seem that the Trump administration’s push to enact work requirements is aimed not at improving health, or even at cutting costs — there are more effective ways to do both — but rather at stigmatizing Medicaid, a program that has become less maligned in recent years, as more Americans have become insured under it. In one 2017 poll, 74 percent of respondents said they had a favorable view of Medicaid.

But while most Americans agree that poor people should have health insurance, they also believe that people of all income levels should earn their benefits — the same poll from last year found that 70 percent of respondents supported Medicaid work requirements. That paradox, of increasing support for Medicaid amid lingering suspicion toward Medicaid recipients, underscores persistent questions about how Americans view those in need…
"[O]ne peculiarity of our present climate is that we care much more about our rights than about our 'good'."  -- Simon Blackburn, Being Good

And, a chronic difficulty lies in determining where the two are not mutually exclusive, no?

UPDATES

From STATnews: "As Atul Gawande steps into a risky health CEO role, here are five challenges he faces."

Notes many of the same issues as Overcharged.
__
 
Modern Healthcare, July 11th:
Is private equity helping or hurting healthcare?
By Harry Gamble  | July 10, 2018


Some view third-party investment in physician practices as a vital trend that offers economies of scale that make healthcare more efficient. Others believe it fosters monopoly control while driving up prices. But nearly everyone agrees that further consolidation within the U.S. healthcare market is coming.

The Chicago-based American Medical Association is in the midst of a yearlong effort to quantify the impact that venture capitalists, private equity firms and other outside entities have on the way doctors treat their patients. The study rolls on as the number of physicians who work for themselves continues to shrink. According to a report by Accenture, the share of U.S doctors in independent practice has plummeted to 33 percent in 2016 from 57 percent in 2000.

"The days of Marcus Welby are behind us," said Anthony LoSasso, professor of health policy and administration at the University of Illinois at Chicago's School of Public Health. "The uncertainty over healthcare policy in Washington is probably driving the integrated healthcare delivery systems and large hospitals to bulk up almost as a counterweight to the uncertainty they face. They know that if you are bigger, you are in a better position to survive whatever may come your way.”…
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More to come...

Sunday, July 1, 2018

20 years


On July 1st, 1998, 20 years ago today, my first born, "Sissy," died at Brotman Medical Center in Culver City, California after a 26 month ordeal with Stage IV liver cancer. She would have turned 50 a few weeks ago.

A couple of months ago we lost her younger sister Danielle to Stage IV pancreatic cancer, here at home.

I'm OK, but I will always bear and feel the two huge leathery scars on my soul.

_____________

Saturday, June 30, 2018

Caregivers/caregiving update. Alexandra Drane in the news.

Saw this on Twitter today, posted by my friend the fabulous Alexandra Drane.

WHY WE’RE THINKING SO HARD ABOUT CAREGIVERS…
 

Because there are a lot of them (44 million to be exact)
 

Because the work they do is incredibly valuable (the value of their unpaid labor is $470 billion)
 

Because their lives are hard (twice the likelihood of developing chronic illness, twice the rate of depression, over twenty hours a week providing care for their loved one)
 

Because they could use some support (84% report negative impact to their state of mind)
 

And it’s in our DNA…
 

Co-founded by Alexandra Drane, a hustling bootstrapper, ARCHANGELS has a lot of heart, a lot of hope, and a ferocious commitment to changing the world. ARCHANGELS believes that caregivers are our country's unsung heroes, that under-utilized resources exist to support them, and that retail is the front line of health. Our goal is to be the trusted resource to support caregivers throughout the US, and, in the process, reframe how caregivers are perceived, and supported. ARCHANGELS is a nationwide effort that leverages the retail channel as a way to identify, thank, and support caregivers by connecting them to the caregiver infrastructure that already exists, but that most caregivers don't know about.
 

We are in the process of figuring out how to best change the world - check back, or check in (contact@archangels.me)


Cool logo.

Recall my earlier post "Caregiver and  nascent care recipient."

I have to see how I can help this effort -- once I recover from my upcoming I-can-hardly-wait SAVR px, after which my wife will get to yet again don the caregiver mantle through 6-8 weeks of post-op recovery. She is really worn out.

ERRATUM

One more in the endless book pile.


David Graeber rocks. The wry humor is a delight. The scholarship is as well. I have all of his books.

Excellent book review here.

"OH, AND, ONE MORE THING"


 Indeed.
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More to come...

Tuesday, June 26, 2018

On "belief" and clinical cognition

"Our brains and nervous systems constitute a belief-generating machine, a system that evolved to assure not truth, logic, and reason, but survival."
-- James Alcock, 1995
Ran into a great book review over at Science Based Medicine today, a new release "How We Believe."

The power of belief
Beliefs guide all our thoughts and behaviors, from brushing our teeth to voting for a particular political party. They have power over life and death: people have willingly died for their beliefs, and someone commits suicide every forty seconds. Alcock elucidates the various factors that contribute to suicide terrorism. And he tries to explain why some beliefs are so powerful that they are impervious to reason and evidence. [emphasis mine - BG]

The belief engine
Alcock says there is nothing fundamentally different about the nature of beliefs that we consider rational and those we deem irrational. We do not choose our beliefs; they are generated and maintained through automatic processes in our brains. He explains what goes into those automatic processes: perceiving, remembering, learning, feeling, and thinking. And he shows how those processes can depart from reality…

Belief and well-being

There can be illness (subjective symptoms) without disease (pathophysiology). Beliefs about the state of our health may not reflect the actual state of health but can contribute to it. Is stress harmful? The belief that stress is bad for us can be deleterious to our health. Alcock examines possibly unreliable reports of people scared to death, dying after hexes, the “broken heart” syndrome, etc. He discusses hysteria, mass hysteria, hypochondria, the worried well, and questionable diagnoses like multiple chemical sensitivity and electromagnetic hypersensitivity.

Belief and healing
Feeling better after a treatment doesn’t necessarily mean we actually are better. Suggestion is powerful, healing rituals are persuasive. He covers Mesmer’s “animal magnetism,” placebo effects, sham surgeries, learned responses, expectancy effects, conditioning, social learning, and theological placebos. He says there are three types of healing: natural healing (the body heals itself), technological healing (drugs, surgery) and interpersonal healing that depends on context and personal interactions and that leads to improvements in illness but not in disease...
Great. Just what I need, yet another book in the Kindle stash. Downloaded.

apropos, a few of my prior posts, "Clinical cognition in the digital age," "Kahneman and Teverksy: clinical judgment and decisionmaking," and "Just the facts..."

Another read I have in progress that will be triangulation grist for this topic.

"Doctors use reason and probability to assess and treat patients. But given the complexity, uncertainty, and fast pace of real-world medical practice, physicians have no choice but to use mental shortcuts and probability estimates as they do their vital work. When doctors deeply understand how they reason, they improve their clinical decision making. This book teaches students, residents, and practicing physicians to think clearly about the logic, probability, and cognitive psychology of medical reasoning. Simple examples, visual explanations, and historical context make the art of how doctors think fascinating and highly relevant to daily medical practice. Reading this book will help you improve the care of your patients, one at a time."
See also my prior post "Clinical workflow, clinical cognition and the Distracted Mind."

Thinking broadly about the core initiating topic for this blog, I remain acutely interested in the myriad factors that guide (and both facilitate or hamper) clinical cognition, including the impacts of DigiTech., e.g., "Are structured data the enemy of health care quality?" 

UPDATE

Interesting post over on Medium:
We’re In an Epidemic of Mistrust in Science
Academia isn’t immune to the scourge of misinformation


Dozens of infants and children in Romania died recently in a major measles outbreak, as a result of prominent celebrities campaigning against vaccination. This trend parallels that of Europe as a whole, which suffered a 400 percent increase in measles cases from 2016 to 2017. Unvaccinated Americans traveling to the World Cup may well bring back the disease to the United States.

Of course, we don’t need European travel to suffer from measles. Kansas just experienced its worst measles outbreak in decades. Children and adults in a few unvaccinated families were key to this widespread outbreak.

Just like in Romania, parents in the United States are fooled by the false claim that vaccines cause autism. This belief has spread widely across the country and leads to a host of problems.

Measles was practically eliminated in the United States by 2000. In recent years, however, outbreaks of measles have been on the rise, driven by parents failing to vaccinate their children in a number of communities. We should be especially concerned because our president has frequently expressed the false view that vaccines cause autism, and his administration has pushed against funding “science-based” policies at the Centers for Disease Control and Prevention.

These illnesses and deaths are among many terrible consequences of the crisis of trust suffered by our institutions in recent years. While headlines focus on declining trust in the media and government, science and academia are not immune to this crisis of confidence, and the results can be deadly…
See my prior "War on Science" related posts.


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More to come...

Saturday, June 23, 2018

Ethics, Values, and Technological Design, continued


Continuing from my prior post. Still slogging through the Springer online review template. Have to say, it's a bit of a disappointment, both in terms of the sluggo template architecture and useful content I'd hope to find. I have a top-of-the-line 27" iMac with buku memory and the latest OS, and, stil, scrolling through this template recalls watching paint dry.

Some topical snips.


If you're looking for timely and useful info on improving health care DigiTech UX broadly to include the needs of all stakeholders, meh... The short "Faber College" take:
"Values Inclusivity is Good."
I may keep perusing it as time permits, but I gotta move on.
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Shortly,


Have to say, I'm liking this very much thus far, notwithstanding its partisan tonal CATO free-market-panacea slant, and some of the Irony-Free Zone chuckles that stuff sometimes provokes.

As a patient now, (yet again) caught up the the bozo maelstrom of the biz side of things, I can relate to a lot of the Crazy they cite. Can't wait to see the absurd Chargemaster EoB accounting fictions emanating from Tuesday's K40.90 abdominal scope job.

I left my glasses case at home. Had to surrender my glasses at pre-op prior to the gurney ride to the OR. They gave me this nifty little nerd pocket clip soft case.


Bar-coded, 'eh? Wonder what that gross charge will be, LOL. $98? $274? $325.82?...

On June 1st I had a coronary angiogram px, preparatory to my pending SAVR.

Click to enlarge
The "chargemaster" total came to $37,635.04. Medicare paid $2667.09. I was on the hook for $1,209.44 (paid it already, out of our HSA account). Total paid was $3,876.73, just a tad more than 10% of (mythical) gross "retail".

I was in the cath lab unit for about 4 hours total. Just shy of $1k/hr. Reasonable?

Stay tuned.
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More to come...

Monday, June 18, 2018

EHR Science update


My online pal Dr. Jerome Carter has resurfaced. He's been burrowed away for months working on what he calls "a monograph" (he'd asked me to be one of the pre-pub reviewers).

From his latest blog post:
…Clinical processes have many moving parts, and many of those parts are ad-hoc adaptations (workarounds) invented by process participants. Frequently, there is a significant difference between what should happen (formal process, as written in policy and procedure documentation) and what actually happens—even when no EHR is present. Process variations may be introduced by a number of factors. Variations created by those performing the process may or may not be a good idea. (After all, workarounds are not necessarily bad if the formal process is poorly designed.) Likewise, patients may introduce process variations, and those variations are actually good if they help to ensure each patient gets the care that is best for his/her situation.

The unavoidable reality is that clinical environments are inherently dynamic and messy, and when safety or quality issues arise, the underlying causes are likely to be multi-factorial. No two ICUs work the same, and primary care practices, even those under the auspices of the same organization, may vary.  So what does all of this mean? It means we need a more scientific way of describing, decomposing, and modeling clinical processes so that for any given process we understand what it actually accomplishes, how it affects patients and those who perform it, and what goes wrong.  The first stab at meeting all of these requirements is found in the two chapters currently in progress.

Matters of software usability and safety have also taken on a new light with this evolution in thinking on clinical processes. Software implementation adds new ways of performing tasks, disrupting existing clinical processes. The resulting disruptions are only partially understood because the original processes were probably incompletely understood and documented. Thus, addressing usability and safety issues requires both looking deeply into existing processes and their variations in addition to looking at software-specific issues. Stated another way, workarounds and disruptions that arise after EHR implementation are not likely arising in an otherwise orthodox process environment. The more probable case is that heterodoxy is already present and the EHR simply adds some of its own.
Further, the mistaken belief that orthodoxy ever prevailed likely results in many futile attempts to correct the problems that arise after implementation.

Usability testing, as now performed, does not have a well-defined method for capturing the nuances of clinical processes in a standard way. Further, usability research is itself not standardized across researchers and institutions. Since each care setting is different, usability findings in one setting may not apply well in another, even though they are ostensibly the same…
I really look forward to reading it.

I've posted on "workflow" many times, see, e.g., Clinical workflow: "YAWL," y'all?

Tangentially apropos, I've been poring over a massive book (849 pages) lately as a registered Springer "journalist online reviewer" It's way too expensive for my piss-ant budget.


You gotta be kidding.

(BTW, I got onto this book in the wake of hooking up with "The International Center for Information Ethics.")

I can peruse all of it via the cumbersome template interface, but cannot screen-scrape any excerpts. I can get at some non-firewalled summary info, though. to wit:
This handbook enumerates every aspect of incorporating moral and societal values into technology design, reflects the fact that the latter has moved on from strict functionality to become sensitive to moral and social values such as sustainability and accountability. Aimed at a broad readership that includes ethicists, policy makers and designers themselves, it proffers a detailed survey of how technological, and institutional, design must now reflect awareness of ethical factors such as sustainability, human well-being, privacy, democracy and justice, inclusivity, trust, accountability, and responsibility (both social and environmental). Edited by a trio of highly experienced academic philosophers with a specialized interest in the ethical dimensions of technology and human creativity, this syncretic handbook collates an array of published material and offers a studied, practical introduction to the field. The volume addresses myriad aspects at the intersection of technology design and ethics, enabling designers to adopt a constructive approach in anticipating, preventing, and resolving societal and ethical issues affecting their work. It covers underlying theory; discrete values such as democracy, human well-being, sustainability and justice; and application domains themselves, which include architecture, bio- and nanotechnology, and military hardware. As the first exhaustive survey of a field whose importance is characterized by almost exponential growth, it represents a compelling addition to a formerly atomized literature.

Abstract
The design of new products, public utilities, and the built environment is traditionally seen as a process in which the moral values of users and society hardly play a role. The traditional view is that design is a technical and value-neutral task of developing artifacts that meet functional requirements formulated by clients and users. These clients and users may have their own moral and societal agendas, yet for engineers, these are just externalities to the design process. An entrenched view on architecture is that “star” architects and designers somehow manage to realize their aesthetic and social goals in their design, thus imposing their values rather than allowing users and society to obtain buildings and artifacts that meet user and societal values.

Below, the table of contents via Mac graphical snips (Shift-Ctrl-Command-4, click-drag).


I am principally interested in implications for improving healthcare tech (e.g., EHR, mHealth UX) and intertwined privacy considerations.


Lots to consider. Stay tuned.

ERRATUM

While we were up in Napa for Father's Day Brunch we heard this NPR/KQED segment while driving home.
City Arts and Lectures
The New Science Of Psychedelics With Michael Pollan

When Michael Pollan set out to research how LSD and psilocybin (the active ingredient in magic mushrooms) are being used to provide relief to people suffering from difficult-to-treat conditions such as depression, addiction and anxiety, he did not intend to write what is undoubtedly his most personal book. But upon discovering how these remarkable substances are improving the lives not only of the mentally ill but also of healthy people coming to grips with the challenges of everyday life, he decided to explore the landscape of the mind in the first person as well as the third. Thus began a singular adventure into the experience of various altered states of consciousness, along with a dive deep into both the latest brain science and the thriving underground community of psychedelic therapists. In “How to Change Your Mind: What the New Science of Psychedelics Teaches Us About Consciousness, Dying, Addiction, Depression, and Transcendence,” Pollan sifts the historical record to separate the truth about these mysterious drugs from the myths that have surrounded them since the Sixties, when a handful of psychedelic evangelists catalyzed a powerful backlash against what was then a promising field of research. Pollan’s other books include “Omnivore’s Dilemma,” “The Botany of Desire,” “Food Rules,” and “Cooked.”
They've not yet posted the audio. I will embed it as soon as it becomes available. I'm reading his book.


NEXT UP FOR ME

ICD-10 K40.90. Should be an interesting day.

WEDNESDAY UPDATE

My laparoscopic hernia job went quickly and without incident. Home by mid-afternoon. Lotta sharp lower right side abdomen pain today (episodic, mostly movement-related). CVS put sand in our gears over filling the Norco scrip post-discharge. A "new policy" requiring not only that you walk the paper Rx to the counter and present photo ID, but they now require a confirmation phone call direct from the ordering surgeon.

10:30 this morning, NADA, zilch, no callback from CVS. Welcome to Opiate Overreaction Land.

UPDATE UPDATE: The Muir post-discharge follow-up nurse called. I recounted the CSV dust-up. She intervened with them, and I got a CVS call straight away saying the scrip had been filled. Duh.

ANOTHER ERRATUM

I'm never gonna get caught up on my reading.

"Why is America’s health care system so expensive? Why do hospitalized patients receive bills laden with inflated charges that come out of the blue from out-of-network providers or that demand payment for services that weren’t delivered? Why do we pay $600 for EpiPens that contain a dollar’s worth of medicine? Why is more than $1 trillion—one out of every three dollars that passes through the system—lost to fraud, wasted on services that don’t help patients, or otherwise misspent?

Overcharged answers these questions. It shows that our health care system, which replaces consumer choice with government control and third-party payment, is effectively designed to make health care more expensive. Prices will fall, quality will improve, and medicine will become more patient-friendly only when consumers take charge and exert pressure from below. For this to happen, consumers must control the money. As Overcharged explains, when health care providers are subjected to the same competitive forces that apply to other businesses, they will either deliver better services more cheaply or they will be replaced by someone who will do so."
Saw this cited over at THCB. This book is slated for July 3rd release. I've addressed these macro issues multiple times. See also my prior "Healthcare Shards" post.

I left an initial flip comment response under the THCB post.

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More to come...