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Thursday, August 16, 2018

Pancreatic cancer claims another one

Rest in peace, Aretha Franklin

Died at home, in hospice care. We know it all too well. She and our Danielle shared similar risk factors.

Only 76. Very, very sad. Our hearts go out to her family. This old washed-up guitar player knew her music so well.


More to come...

Monday, August 6, 2018

EBM and the SOAP process

Interesting inexpensive resource ("EBM," Evidence-Based Medicine -- as opposed to "Eminence-Based Medicine"):

This short book provides the skills and tools to empower the reader to make better sense of clinical evidence. Present-day journal articles reflect ever-increasing complexity in research design, methods and analyses, and this welcome addition to the field will help readers to get the most from such papers.

With a little practice the book will indeed make it easier to understand the evidence related to healthcare interventions; it provides a clear and accessible account across the whole subject area. The authors avoid unnecessary jargon and have designed the book to be flexible in its use – it can be read from cover to cover or dipped into for specific topics.

Clinical Evidence Made Easy is helpfully structured into two main sections. The first provides the reader with the necessary skills underpinning evidence-based practice, the second gives invaluable tools for appraising different types of articles together with practical examples of their use. Moreover, the configuration within the sections makes for easy reading: common headings are used across chapters so that the reader quickly becomes familiar with the structure and the way ideas are presented.

This is a great book for busy clinicians who want to learn how to deliver evidence-based practice and have at their fingertips the tools to make sense of the burgeoning research literature. Indeed, it will also be valuable for those engaged in research, to aid the planning and delivery of their own projects.

This book is designed for healthcare professionals who need to know how to understand and appraise the clinical evidence that they come across every day.

We do not assume that you have any prior knowledge of research methodology, statistical analysis or how papers are written. However basic your knowledge, you will find that everything is clearly explained.

We have designed a clinical evidence appraisal tool for each of the main types of research method. These can be found in the second section of the book, ‘Clinical evidence at work’, and you can use them to help you evaluate research papers and other clinical literature, so that you can decide whether they should change your practice…

Harris, Michael; Harris, Michael; Taylor, Gordon; Taylor, Gordon; Jackson, Daniel; Jackson, Daniel. Clinical Evidence Made Easy. Scion Publishing. Kindle Edition. 
I am liking it. Fairly comprehensive topical coverage.

Understanding clinical evidence
1. The importance of clinical evidence
2. Asking the right questions
3. Looking for evidence
4. Choosing and reading a paper
5. Recognizing bias
6. Statistics that describe
7. Statistics that predict
8. Randomized controlled trials
9. Cohort studies

10. Case–control studies
11. Research on diagnostic tests
12. Qualitative research
13. Research that summarizes other research
14. Clinical guidelines
15. Health economic evidence
16. Evidence from pharmaceutical companies
17. Applying the evidence in real life

Clinical evidence at work

18. Asking the right questions
19. Choosing the right statistical test
20. Randomized controlled trials
21. Cohort studies
22. Case–control studies
23. Research on diagnostic tests
24. Qualitative research
25. Research that summarizes other research
26. Clinical guidelines
27. Health economic evidence
28. Evidence from pharmaceutical companies
29. Putting it all together…

* They fail to fully make clear whether "external clinical evidence" refers only to that of clinical literature, and does not include patient exam and testing data. I have to assume that eval of exam room/bedside data comes under "clinical expertise."

More broadly. "evidence" is information (typically comprising lexical/discoursive and more structured alphanumeric "data") that makes a true conclusion more likely (or, more rarely, constitutes dispositive "proof").
A "fallacy" is any assertion purporting to contain "evidence" but in fact does not. Fallacies are legion, both structural/formal, and "informal/rhetorical." Also worth noting here are the numerous "cognitive biases" that chronically afflict our ability to "reason" accurately. I have long been a student of this stuff, and spent a number of fun years teaching post-secondary "Critical Thinking."


Subjective - Objective - Assessment - Plan

Simple example here.
NOTE: My former Sup in the Meaningful Use program, Keith Parker, argued that "SOAP" should properly be "SOAPe" ("e" for Evaluation). Scroll down in this post. He's right.

A cute, brief YouTube SOAP note video:


"CHEIF COMPLAINT"? Lordy. Nonetheless...

A couple more of my graphic riffs on the process.

"SOAP Note" on the wiki.

I've noted the point many times that there's a lot going on in the exam room, usually with insufficient time for deeply deliberative assessment given the still-dominant economic regime of the "Productivity Treadmill."


Search the text for "SOAP." Nothing. Search the text for "Bayes" and "Bayesian." Nothing.
(Nothing either for "exam," "differential," "rule out," "digital," "EMR," "EHR," "electronic.")
"P Value?"

23 hits. to wit,
The P value

The P value gives the probability of an observed difference having happened by chance.

P = 0.5 means that the probability of a difference having happened by chance is 0.5 in 1, or 50%.

P = 0.05 means that the probability of the difference having happened by chance is 0.05 in 1, or 5%. This is the level when we traditionally consider the difference to be sufficient to reject the null hypothesis.

The lower the P value, the lower the likelihood that the difference occurred by chance and therefore the stronger the evidence for rejecting the null hypothesis and concluding that the intervention really does have a different effect. As the P value that is normally used for this is 0.05, when P < 0.05 we can conclude that the null hypothesis is false…
[op cit, pg 38]
Yeah. That's the way they continue to teach it. Way simplistic. First a "p value" is a probability estimate, one that will also yield a variability distribution in the wake of repeated trials. Second, it assumes a perfectly Gaussian distribution (bell curve). See a 1996 ASQ newsletter column of mine, "Probability from 'C' to 'G'." (pdf)

I worked in credit risk modeling and management for five years (large pdf link). We never took p-values and distributional assumptions at face value. The name of the game was (and is) stress-tested expected value computations. We made successive record profits every year I was there. (Wrote about that time in my life here.)
In fairness, the authors do make one brief cite concerning a statistical test useful for "skewed data." But, just one simple example.

I've not read the book closely yet, but I have skimmed the chapters, and I do like what I find therein. Every chapter closes with a "Putting it all together" closing paragraph or two. It's really about assessing the "external clinical evidence" originating beyond the exam room or patient bedside.

I am a regular at SBM, the "Science Based Medicine" blog. You might like the search results there for "Evidence-Based Medicine."
There is a bit of pedantic nit-picking out there as to whether EBM differs materially from SBM. I don't think so. From the SBM site:
"Good science is the best and only way to determine which treatments and products are truly safe and effective. That idea is already formalized in a movement known as evidence-based medicine (EBM). EBM is a vital and positive influence on the practice of medicine, but it has limitations and problems in practice: it often overemphasizes the value of evidence from clinical trials alone, with some unintended consequences, such as taxpayer dollars spent on “more research” of questionable value. The idea of SBM is not to compete with EBM, but a call to enhance it with a broader view: to answer the question “what works?” we must give more importance to our cumulative scientific knowledge from all relevant disciplines."

Again, "Evidence" -- "that which makes a true conclusion more likely." It behooves us keep in mind that evidence itself spans a distribution, e.g.: "nil - weak - indeterminate - likely - dispositive." Gets even hairier when you add in "conjuncts" i.e., "given this and that, and that over there..." (just for starters).

I think about this stuff all the time. But what spurred this post in particular was this cool Atlantic article:

Yeah. Which returns me to this book I've been studying. Cited it earlier.

Below, another one I need to report on. Goes to the EBM thing.

Beyond those, a number of additional recent books inform my thinking (many of which I've cited on the blog before):
The Enigma of Reason
The Knowledge Illusion
The Distracted Mind
The Secret Life of the Mind
Touching a Nerve
World Without Mind
How to Think
Big Mind
The Book of Why
Snowball in a Blizzard
How Doctors Think
Thinking, Fast and Slow
Moral Tribes
More Harm Than Good
Changing minds
Levers of Influence
How to Change Your Mind
Being Wrong
There are more, but this will do for now on the topics relating to cognition. My long-time abiding interest goes to improving diagnostic (and px/tx) reasoning via understanding and explicating the salient aspects of rational clinical cognition. Inextricably intertwined with this is an understanding of the relevant aspects of Health IT. To the extent that the latter impedes the former (poor UX), well (as many complain), it contributes to adversity.


18 days 'til my heart surgery. Keep singing "woke up this mornin'..." 18 more times.


apropos of continuing to wake up, saw a post about this book over at THCB.

Amazon link here. Looks interesting. I am reminded of Ann Neumann's book The Good Death.


Interesting. Stay Tuned. Source, a WIRED article.

More to come...

Wednesday, August 1, 2018

My "Check Engine" light

My mental dashboard "Check Engine" light has been blaring "on" continuously since early 2017. Or, to use another apt metaphor, I've been on

for about 19 months.

After spending most of 2015 dealing with prostate cancer (successfully, it would thus far seem), by 2016 I was back on my Trek racing bike and back in the gym, lifting weights and holding my own at full-court pickup hoops with guys half to a quarter my age (I was 70 at the time). Mr. No-Hops, a Legend in His own Mind. He of the 6-inch Vertical, who moves in geologic time. He of the Wax Museum D...

GDaddy and the Grandson at City Sport, 2016
Dr. Daniel Kraft (cited here recently) is a fan of the "dashboard" metaphor when it comes to health monitoring apps. See a brief video featuring him, "A Virtual Dashboard of our Health." 

Cool guy. He's in a ton of videos over on YouTube.

My "Check Engine" light thing is more mundane. I don't think there are any "apps" for my evolved condition.

In January 2017 our beloved 15 yr old rescue dog Jaco was diagnosed with a large terminal tumor in his abdomen. We'd had him since we found him on a freeway ramp in Las Vegas in 2003. He was the sweetest.

The vet gave him a month or two. In late February, after monitoring him closely day-by-day, hour-by-hour, I finally had to have him put down.

Earlier in February, on the 7th, My dear old Seattle area friend of 44 years (and former bandmate, world-class drummer) Kurt Kolstad succumbed after a 12-year battle with Mantle Cell Lymphoma. Several years earlier his wife died from COPD. Too much, man, too much.

Then, on March 29th, 2017, "the dx from hell" arrived. My younger daughter was found to have Stage IV metastatic pancreatic cancer. She would live until April 27th, 2018 after a year of chemo regimens followed by 6 weeks of home hospice care here at our house.

During this time, I'd gotten a new Primary at Muir. During my first exam he told he he detected a heart murmur. He quickly looked in my chart and found my 2015 cardiac echo px (done while I was in the hospital for sepsis after my prostate biopsy). The echo result had been deemed "subclinical," but my new doc referred me to a cardiologist for closer review and follow-up.

A treadmill EKG study and series of echoes ensued ("active surveillance"), and my aortic valve condition continued to decline significantly. My dx now is "severe aortic stenosis," and I'm now scheduled for a SAVR valve replacement px in late August (ineligible for a "TAVR" but I'd decided against it anyway). I had a coronary angiogram done earlier this year, negative for blockages -- "you have the arteries of an 18 yr old" (that's gotta be my decades of gym rat hoops).

The constipating stress of Danielle's illness also surely played a role in my getting a large inguinal hernia. It got worse and worse, but cardiology refused to greenlight me for abdominal surgery, citing anesthesia risk, given my heart problem. Gotta fix the valve first. Eventually they relented, with the stipulation that I have a cardiac anesthesiologist present at the hernia scope job. Done.

That could not have gone better.

Now it's time for the Big Show. My recent chest CT confirms no aorta problem or other proximate issues, just a seriously bad valve.

I've been putting this off during Danielle's illness, and now until after my Grandson's August 10th wedding in Las Vegas, where he lives. Had it not been for these circumstances, I'd have had the SAVR px months ago. I feel like I've pushed the envelope all the way out.

Sometimes I feel like the stress of all of this has taken at least 5 years off my remaining life. I am so ready to be over all this. It's likely that I will have to miss the Health 2.0 Conference this year. I may not be cleared to drive by then. (Candidly, I'm not sure that my conference coverage M.O. is all that distinct any more, now that everyone is carrying smartphones with great optics for real- and near-real time WiFi internet sharing.)

If I don't see you there, have a great time.


THE Health IT event of the year.

More to come...

Saturday, July 28, 2018

BioMed Sector: the Bleeding Edge

My wife alerted me to this.

"What you don't know, can hurt you. From the Academy Award® nominated filmmakers Kirby Dick and Amy Ziering (The Invisible War, The Hunting Ground) comes a groundbreaking investigation into the crimes of Big Medical. America has the most technologically advanced health care system in the world, yet medical interventions have become the third leading cause of death, and the overwhelming majority of high-risk implanted devices never require a single clinical trial."
Film Review: ‘The Bleeding Edge’
Kirby Dick's disturbingly powerful exposé of the medical-device industry nails a corporatized America that has stopped taking care of its citizens.

If you watch enough passionate muckraking social-justice documentaries, or simply listen to the news every day, you may feel like you’ve lost the capacity to be shocked. But “The Bleeding Edge,” Kirby Dick’s disturbingly powerful and important documentary about the medical-device industry, contains a line near the end that truly shocked me, because it defines, with a word (in fact, three little letters), what’s happened to America.

The movie is about an industry that now generates revenues of $300 billion a year by producing and marketing the highly sophisticated utensils and apparatuses that get implanted into people’s bodies. (Over the last decade, 70 million Americans have been outfitted with internal medical devices.) It’s also about the scandalous and clandestine inhumanity of those companies. There are, of course, many devices that save lives and vastly uplift people’s daily welfare: pacemakers, hip replacements, cornea transplants.

The film doesn’t deny any of this; it never paints its indictment with a broad brush. But it focuses on a handful of devices that have caused toxic levels of harm to the trusting victims who’ve used them, and the scandal — which is ongoing — is that the devices were never properly tested. In essence, the corporations put them out there and said, “What the hell, let’s give this a try!” The people who used the devices became human guinea pigs (just like the women who took thalidomide in the late 1950s), and when they began to develop symptoms of harm, they had no idea what was happening to them. Even when they started to figure out the source of their symptoms, there was little or no recourse and (in many cases) no way to reverse the damage…
Interesting. About a month hence I will be the SAVR px recipient of a biomedical device, a prosthetic bovine aortic valve.

I recently finished watching the moving HBO documentary on the late Robin Williams ("Come inside my mind"). I'd not been aware that he'd had a SAVR:

What a terrible loss.

I never got to meet him. That would have been so cool. We have a mutual connection.

We have NetFlix here, will have to pull up The Bleeding Edge and watch it. Stay tuned.


We pulled The Bleeding Edge up on NetFlix and watched it in its entirety in rapt attention. It is a must-see.

Compelling. Infuriating.

Again, a must-see documentary. Below, from the website:
The Facts in The Bleeding Edge

The medical device industry has responded to the malfeasance exposed in our investigative documentary The Bleeding Edge.

Here are the facts:

The facts set forth in The Bleeding Edge are accurate and have been rigorously vetted by extensive research and multiple experts.

Bayer claims the portrayal of its harmful birth control device Essure in The Bleeding Edge “lacks scientific support” and is “inaccurate and misleading.” These claims are false.

The truth is that Essure was approved under an “expedited review” without randomized, nonblinded studies or a comparator group. These studies followed most participants for only 18 months, even though Essure is supposed to remain implanted for a woman’s lifetime. Some of the patient forms in the Essure studies were altered to reflect a more positive outcome than what was reported by the patient. Conceptus, the original manufacturer of Essure purchased by Bayer, hid more than 32,000 adverse events regarding Essure from the FDA.

Bayer’s attacks on three of the experts in The Bleeding Edge are without substance. There are no conflicts of interest regarding any of the experts in our film.

Dr. Diana Zuckerman is president of the non-profit National Center for Health Research (NCRH.) As an expert witness discussing her survey of Essure patients, she requested that the plaintiff’s attorney pay $375 to the NCRH. This represents no conflict because she says nothing about Essure in the film. Dr. Zuckerman has been quoted in the New York Times, the Washington Post and other media describing the need for well-designed, long-term research on Essure.

Dr. Julio Novoa is an experienced OB-GYN who surgically removes Essure from women who have been harmed by the device. For Bayer to suggest that he has “a financial interest in recommending the removal of the product” because he is being paid for doing his job is both cynical and false. Madris Tomes, a former public health analyst for the FDA, provides FDA public data and trends of adverse event reports to clients. Tomes has provided data expertise to the Essure Problems Facebook group pro bono.

On July 20, one week before The Bleeding Edge was released on Netflix, Bayer announced it would stop selling Essure after 2018.

In response to the film, Johnson & Johnson stated “providing safe and effective products is always our top priority.” This is contradicted by the fact that they released cobalt metal-on-metal hips as well as pelvic mesh despite knowing that there were significant safety risks with both.

Court records show that in 1995 a scientist from DePuy, whose parent company is J&J, warned about the dangers of their cobalt metal hip. After it was put on the market, surgeons, researchers and health officials repeatedly informed J&J that their hip device was harming patients, but it wasn’t until 2010 that J&J finally recalled the product, after it harmed tens of thousands of people.

Additionally, court records show that J&J also knew their pelvic mesh would injure women, but J&J chose to put the device on the market anyway. There are now tens of thousands of lawsuits filed against them by women harmed by mesh.

In response to the film, the FDA stated, “Often the true benefit-risk profile of a device cannot be fully understood until it can be evaluated when used in routine clinical practice.” This is far too late. To protect Americans, the FDA must establish that a device is safe before it is put on the market.
The FDA claims that it has taken “many steps” in recent years regarding Essure, but the FDA never took the most important step: recalling this flawed and dangerous device from the market in the U.S., especially after it had been taken off the market in the rest of the world.
The FDA, Bayer, Johnson & Johnson all declined to be interviewed for the film.

From The Union of Concerned Scientists:
Drug and Medical Device Companies Have Outsized Influence on FDA
$700 million in lobbying buys significant access

As Congress decides the influence that pharmaceutical, biotech and medical device companies should have over the Food and Drug Administration (FDA), industry spends big.

Data compiled by the Center for Responsive Politics and commissioned by the Union of Concerned Scientists show that between 2009 and 2011, prescription drug, biotechnology and medical device companies spent more than $700 million lobbying Congress and the Obama administration.

That’s a lot of money. By comparison, the insurance industry spent $480 million in the same period. Drug companies alone spent more than $487 million on lobbying during the three-year period; biotechnology and medical device companies spent $126 million and $86 million, respectively.

Over the same period, elected officials on a House subcommittee and a Senate committee with oversight over FDA received nearly $6.3 million in campaign contributions from these industries. Donations went to both Republicans and Democrats.

Explore the major findings from our investigation and see all of the data we relied upon…
In a recent book review post, "Overcharged: paying for health care," we looked at U.S. exorbitant cost issues. Here's an excerpt from the book:
“How Could a Medical Device Be So Well Accepted Without Any Evidence of Efficacy?” We offer three reasons. First, doctors had a theory suggesting that the filters should work. Second, once the practice of using filters gained a following, doctors simply “assumed that there was strong evidence for their use.” Why else would so many doctors have put so many filters in so many patients? Third, Medicare, Medicaid, and other payers covered the procedures. In hospital settings, Medicare paid $3,300 for filter insertion, $2,600 for filter repositioning, and $2,600 for filter removal. When these procedures were performed in a doctor’s office, the fees were $2,800, $1,800, and $1,750, respectively. Treatment patterns got well ahead of the science. When the science finally caught up, there was a large financial incentive not to reverse course.

AUCs and other professional guidelines are pointless unless they limit practitioners’ discretion and prevent them from recommending aggressive treatments too often. The tendency to overprescribe reflects a confluence of factors: physicians’ strong desire to help, their belief in the efficacy of their tools, and, of course, the strong financial incentive to perform procedures. As Dr. Redberg put it when discussing the epidemic of overstenting, “It’s like asking a barber if you need a haircut. To an interventional cardiologist, stents are good for almost everyone.”

Charles Silver & David A. Hyman. Overcharged: Why Americans Pay Too Much for Health Care (Kindle Locations 2340-2351). CATO Institute.
Interesting. BTW, searching "FDA" in the book netted 87 hits, nearly all of the textual references using the acronym critical.


THE Health IT event of the year.

Saw news that Alan Alda has gone public with his having Parkinson's. He remains unfazed, and continues with great work (that I have to sheepishly admit to not having been aware of).

"The Alan Alda Center for Communicating Science empowers scientists and health professionals to communicate complex topics in clear, vivid, and engaging ways; leading to improved understanding by the public, media, patients, elected officials, and others outside of their own discipline..."
I registered. This is important stuff.

More in a forthcoming post. For now, relatedly, see my prior post "A case for interdisciplinary science."

More to come...

Thursday, July 26, 2018

Daniel Kraft on AI and early dx detection

I've cited Daniel Kraft before, and seen him at many Health 2.0 events.

2017 Conference

 A Heavy Hitter. Pediatric oncologist and cutting-edge techie.

Rob Reid has interviewed him for ARS Technica.
"Daniel founded and runs the Exponential Medicine Conference, which is one of the largest cross-disciplinary gatherings of life science researchers and innovators. He also founded and runs the medical faculty at Singularity University—an academic institution so quirky, it could only have sprouted up from Silicon Valley’s soil.

When Daniel does a presentation, he's the opposite of that speaker we've all seen—the one who has to do everything possible to pad their words and slides to fill a time slot. With Daniel, I always sense that there's an entire presentation lurking behind every slide that he puts on the screen. He just has so much surface area from his two highly complementary jobs, which connect him to hundreds of startups and researchers every year. Daniel is particularly deep in medical devices, ranging from consumer-grade gear to tools that only turn up in research hospitals. And as an oncologist, he’s of course deeply informed about cancer…"

Enjoy. (BTW, correction: two episodes, not three.)

Article interview links here and here (replete with transcripts).


Ran across another interesting book, cited over at Naked Capitalism.

The emergence of organisms who are conscious of the direction of evolution is one of the most important steps in the evolution of life on any planet. Once organisms discover the direction of evolution, they can use it to guide their own evolution. If they know where evolution is going, they can work out what will produce success in the future, and use this to plan how they will evolve. Living things can evolve without having any knowledge of the direction of evolution. The diversity and complexity of life on earth is testimony to that. Organisms can try to deal with the future by blindly making changes to themselves or their offspring and seeing how the changes work out in practice. But this takes a lot of costly trial-and-error, particularly when the future is complex or changes rapidly. It is a bit like trying to drive a car through peak-hour traffic blindfolded. It will not be a winning strategy for organisms whose competitors can predict future events and use this to evolve more effectively.

The alternative is for organisms to guide their evolution by forming a picture of how evolution is likely to unfold in the future. They can try to find trends and patterns in this evolution that might impact on their future chances of survival. They can then use these patterns to order to see how they must change themselves and the way they are organized in order to continue to be successful.

On this planet, the organism that appears likely to take this significant evolutionary step is us. Our growing understanding of evolution is providing us with the knowledge that will enable us to see that there are large-scale patterns in the evolution of life. And it is a short step from this to recognising the evolutionary significance of using these patterns to guide our own evolution. But this significant step will not be possible until we have developed a comprehensive understanding of the direction of evolution and of its implications for humanity. The development of this theory will itself be an important step in our evolution…

Stewart, John. Evolution's Arrow: the direction of evolution and the future of humanity (Kindle Locations 91-109). The Chapman Press. Kindle Edition.
Yeah. But it behooves us to not conflate biological evolution (the s-l-o-w stochastic "random walk"; Gould's "Drunkard's Walk") with "cultural evolution" (which is Lamarckist, and embodies exponential improvements in technologies).


 Monday August 20th, my decrepit aortic valve comes out. Whew. As I noted in a prior post,
...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.
I've put this off as long as possible, given Danielle's illness. Tomorrow will be both her 48th birthday and precisely three months since she died.


Interesting excerpt from a STATnews article:
Physicians aren’t ‘burning out.’ They’re suffering from moral injury

The term “moral injury” was first used to describe soldiers’ responses to their actions in war. It represents “perpetrating, failing to prevent, bearing witness to, or learning about acts that transgress deeply held moral beliefs and expectations.” Journalist Diane Silver describes it as “a deep soul wound that pierces a person’s identity, sense of morality, and relationship to society.”

The moral injury of health care is not the offense of killing another human in the context of war. It is being unable to provide high-quality care and healing in the context of health care.

Most physicians enter medicine following a calling rather than a career path. They go into the field with a desire to help people. Many approach it with almost religious zeal, enduring lost sleep, lost years of young adulthood, huge opportunity costs, family strain, financial instability, disregard for personal health, and a multitude of other challenges. Each hurdle offers a lesson in endurance in the service of one’s goal which, starting in the third year of medical school, is sharply focused on ensuring the best care for one’s patients. Failing to consistently meet patients’ needs has a profound impact on physician wellbeing — this is the crux of consequent moral injury…

In an increasingly business-oriented and profit-driven health care environment, physicians must consider a multitude of factors other than their patients’ best interests when deciding on treatment. Financial considerations — of hospitals, health care systems, insurers, patients, and sometimes of the physician himself or herself — lead to conflicts of interest. Electronic health records, which distract from patient encounters and fragment care but which are extraordinarily effective at tracking productivity and other business metrics, overwhelm busy physicians with tasks unrelated to providing outstanding face-to-face interactions. The constant specter of litigation drives physicians to over-test, over-read, and over-react to results — at times actively harming patients to avoid lawsuits.

Patient satisfaction scores and provider rating and review sites can give patients more information about choosing a physician, a hospital, or a health care system. But they can also silence physicians from providing necessary but unwelcome advice to patients, and can lead to over-treatment to keep some patients satisfied. Business practices may drive providers to refer patients within their own systems, even knowing that doing so will delay care or that their equipment or staffing is sub-optimal.

Navigating an ethical path among such intensely competing drivers is emotionally and morally exhausting. Continually being caught between the Hippocratic oath, a decade of training, and the realities of making a profit from people at their sickest and most vulnerable is an untenable and unreasonable demand. Routinely experiencing the suffering, anguish, and loss of being unable to deliver the care that patients need is deeply painful. These routine, incessant betrayals of patient care and trust are examples of “death by a thousand cuts.” Any one of them, delivered alone, might heal. But repeated on a daily basis, they coalesce into the moral injury of health care...
I will let slide for now the obligatory shot at EHRs.


My iPhone wallpaper. Today is my late daughter's 48th birthday. We shot this "selfie" back in March the day after she returned from the Kaiser Antioch ER the prior night, where she'd decided to commence home hospice care.


More to come...

Monday, July 23, 2018

Are we "Overcharged" for health care? Will it get even worse?

Recall my recent post citing this book:

Saw some additional stuff of interest via NPR. "Health Insurers Are Vacuuming Up Details About You — And It Could Raise Your Rates."

Insurance companies and data brokers are more and more often using your personal information from social media to predict your health care costs. And they are exploring ways to use that data to determine the rates that you will pay. That's the finding of a new investigation by the nonprofit newsroom ProPublica. Joining us now from our New York studio is their reporter Marshall Allen.
Good morning, Marshall.


Good morning.


All right - so you found that insurance companies are using stuff that we post on Facebook and Twitter and Instagram. What exactly are they gathering?


Well, they're gathering things about your race, your ethnicity, your education level, your TV-watching habits, your marital status, your net worth. They're trying to gather everything they can about us to, in some cases, try and predict what it will cost us to be cared for.


What does me being married or not being married have to do with health insurance?


Well, there's a lot of studies now about social determinants of health - that's kind of the jargon they use to describe it - that show that a lot of a person's health does come from social and economic conditions that they're raised in. And you can kind of see, as a group, how this would happen. So for instance, one of the companies would say, if you're a woman who's recently changed your name, which is something they can tell from public records, maybe you're newly married and so you're about to get pregnant. Or perhaps you are recently divorced and so you're stressed out. And both of those things could lead to higher health care costs.


They are making a heck of a lot of assumptions here. How accurate is this as a method of predicting how healthy people are or are not?


Well, that's what I kept asking them. You know, I had a lot of conversations with a company called LexisNexis Risk Solutions. They're one of the main data brokers who are trafficking in this kind of information. And what they said they've done is that they've linked the personal attributes that we all have to claims data from our medical care costs. And then they use that to draw inferences, which they say are accurate. Now, they haven't done any studies that are available about this. They don't put out any methodology, so we can't really tell how they're doing it. It is a black box. But they say that it is predictive.

I want to point out one other important detail. I wasn't able to nail down whether they're actually using this information to price our health plans right now for a process called underwriting. They're definitely using it to measure our costs and estimate our costs. But what the insurance industry says they're doing is they're using it for case management so they can offer services to help sick people stay healthier.


OK. So they're saying it is a benevolent move on their part.


That's exactly right. They say that this allows them to offer better services for patients.


Is there an argument here that this is exactly what insurance companies do? They get all the data they can on you, and then they figure out how much of a risk you are. I'm just trying to figure out why this is notable. It sort of seems like insurance companies were destined to do this once they knew they could.


Well, it does seem that way, and I think that's a really reasonable question to ask. And you know, they do need to properly assess the risk of each of us so that they can properly price plans so they can know how much we might cost. I mean, that's an important part of the process.

But one thing is this is happening with no public scrutiny. And this is also happening in a way where insurance companies could use the information to discriminate. And that's not something I nailed down with my reporting, but I talked to a lot of experts about how insurance companies do what's called cherry-picking. And by that, I mean they will try and find the healthiest, lowest-cost people and offer them health insurance. And they will try and avoid high-cost health conditions so that they don't have more risk. The Affordable Care Act has made it more difficult to blatantly discriminate, but experts say the discrimination still exists and that this type of information could be used for that purpose.


Marshall Allen is a reporter with ProPublica. Marshall, thank you so much for joining us.


Thank you.
I did a 5-year stint in subprime risk modeling and management (2000 - 2005). Back then we had applicant and customer data elements in our own data warehouse we could not legally use for vetting current and prospective customer risks. Those restraints seem to be long-gone.
[ I wrote all of the bank's White Papers. See my Proprietary Risk Model Scorecard Suite Development paper (large pdf). ]
apropos, see my prior post "(404)^n, the upshot of dirty data." And, my post "The old internet of data, the new internet of things and "Big Data," and the evolving internet of YOU."


From Down Under.
Why Healthy People Should Subsidize the Sick
An introduction to healthcare economics
If there’s one thing that we can all agree on, it’s that healthcare should be cheaper. It’s not that healthcare is overpriced — although if you live in the U.S. you’re probably paying double anyone else in the world — but that it’s a significant cost that takes up a huge portion of our budget and it would be really nice if it were less expensive.

Also, it’s extremely overpriced…
Interesting argument. Will be much unloved over at The CATO Institute.

More to come...

Saturday, July 21, 2018

A case for interdisciplinary science

Got my latest hardcopy issue of Science Magazine. Of particular interest:

Conversations spark connections as scientists search for inspiration in other fields

If you knocked on Heaven’s door, and God greeted you, what question would you ask? What is the nature of human consciousness, and how can it be expanded? Where does the Universe begin and end? What is time, and why isn’t it constant? What causes deviance? And further still, if you received an answer, could you decipher it? Or would the answer only be a clue leading to the next clue?

The Most Unknown, a documentary film in the Simons Foundation Science Sandbox series, takes the viewer on a fantastical journey of nine scientists as they intrepidly knock on Heaven’s door. Each asks a profound question in a different way. But all are making a difference in how science explains the universe, the world we live in, and the worlds within us.

Although the filmmaker, Ian Cheney, is not a scientist, he makes a point that is now well documented scientifically: Scientists from different disciplines who immerse themselves in one another’s work and exchange ideas solve the hardest problems…

Woven into the film’s electrifying tapestry of ideas, persons, and places is the story of the hard work of science. Great discovery, we see, comes part and parcel with emotional frustration and disappointment, unusual hours that buck circadian rhythms, tight spaces, cold water, and dark places.

In The Most Unknown, Cheney connects apparently disparate journeys of discovery, illustrating where interdisciplinary teamwork can fill in a scientist’s blind spots. When seen through this lens, science can be viewed as a big import-export business of ideas. Conventional, well-understood ideas in one area, when brought into another scientific domain, are suddenly seen in a new light.

Newton’s observations that “standing on the shoulders of giants” is key to scientific discovery may only have been half right. As documented in The Most Unknown, scientists also have much to learn from their contemporaries.
Indeed. Can't wait to see this.

"The Most Unknown is an epic documentary film that sends nine scientists to extraordinary parts of the world to uncover unexpected answers to some of humanity’s biggest questions. How did life begin? What is time? What is consciousness? How much do we really know?

By introducing researchers from diverse backgrounds for the first time, then dropping them into new, immersive field work they previously hadn’t tackled, the film reveals the true potential of interdisciplinary collaboration, pushing the boundaries of how science storytelling is approached. What emerges is a deeply human trip to the foundations of discovery and a powerful reminder that the unanswered questions are the most crucial ones to pose.

Directed by Emmy-nominated and Peabody Award-winning filmmaker Ian Cheney (The Search for General Tso, The City Dark) and advised by world-renowned filmmaker Werner Herzog (Fitzcarraldo, Aguirre, The Wrath of God, Grizzly Man), The Most Unknown is an ambitious look at a side of science never before shown on screen. The film was made possible by a grant from Science Sandbox, a Simons Foundation initiative dedicated to engaging everyone with the process of science."
From the documentary info site at MOTHERBOARD:
In a world where the knowledge we gain from basic research faces a variety of threats ranging from apathy to outright antagonism, how do we make people care about science? For one, we can start with asking scientists why they're doing the work in the first place.

We're pleased to share the first trailer for Motherboard's first feature-length documentary, titled "The Most Unknown," which explores some of the biggest questions in science: What is dark matter? What is consciousness? Where did life come from? Is there life elsewhere in the universe?
Among other germane topics, this goes to themes in this book I cited earlier:

Another relevant prior citation comes to mind:

We must also recall the late Hans Gosling's new book "Factfulness." See also my citation of the book "The Silo Effect." And, my recent post "STEMM should get HACD."

Finally for now, my January 2017 post "I am not a scientist."

More to come...

Thursday, July 19, 2018

Indu Speaks

Dear friends and family, I’m thrilled to share that I was selected as an Aspen Fellow to immerse myself in the examination of leadership and to apply my learnings in to improve health and healthcare in the US. I'm daunted and honored and welcome conversations with all of you to take this task forward!

I’ve had a funny career, and this past year gave me a chance to reflect and reset. I launched not just to archive my work over the past 10+ years but also to explain to people, once and for all, what I do for a living! Here’s to all the oddballs who freeze when they can’t answer: fireman or policeman, doctor or lawyer when asked by their son’s first grade classmates what their job is (true story!). If there’s anything that the joy of speaking, writing and convening has taught me, it’s that no single one of us has the answer. But we can ask hard questions, listen deeply and then experiment according to our understanding. Rinse, repeat. And that makes and will always make a difference.

Thank you for your friendship and support, and sharing in a community of the curious as we figure this world out and hopefully leave it a touch better in some corners in whatever way we can.

One of my shots from the 2017 Health 2.0 Conference
" single one of us has the answer. But we can ask hard questions, listen deeply and then experiment according to our understanding. Rinse, repeat. And that makes and will always make a difference."
Indeed. This old "oddball" washed-up guitar player / techie could not agree more.

I have long called Indu "the most cheerful person in all of health care."


THE Health IT event of the year.

More to come...

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)."


"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.

"Today we open with a heartening story about an infant who went through one of Robert’s studies and may have picked up fifteen IQ points as a direct result (this is neither a metaphor nor an exaggeration)! It’s an early—and perhaps even the first—hard example of how full-genome sequencing at birth could one day save innumerable lives and preclude untold human suffering."

Host Rob Reid on Twitter. And, Robert C. Green, MD, MPH, interviewee. See also here.
(BTW, there are links to the transcripts at the Ars Technica site.)
From one of their papers (pdf):
Short-term costs of integrating whole-genome sequencing into primary care and cardiology settings: a pilot randomized trial

Whole-genome sequencing (WGS) can facilitate molecular diagnoses and identify genetic variants to characterize disease risks, tailor medications, screen for recessive traits, and more. Dramatic improvements in its cost, speed, and capabilities are fueling expectations that WGS will become an important part of everyday patient care, and some commentators hope that it will streamline diagnoses and enhance disease prevention. Early evidence is promising, but there are concerns that WGS may also initiate a cascade of confirmatory testing and ongoing screening that greatly increases health-care expenditures. Empirical data to inform the discussion are sparse…
Cost-benefit considerations?

I've had a recurrent go at various aspects of genomics issues here.This topic also goes to "Information Ethics."

"We close by discussing a massively ambitious government initiative that’s just gathering steam called “All of Us.” If it delivers on its goals (and doesn’t turn into a DMV-like debacle), it could transform our understanding of health, aging, and disease innumerable times more than the renowned Framingham Heart Study..."
Yeah, that goes to another prior post of mine, "All of Us?" "Personalized Medicine?"


I finished listening intently to all three Reid-Green podcasts. Highly, highly recommended. Well worth your time. About 100 minutes total interview program. They pretty much cover the broad and deep gamut of tech, economic, sociopolitical, and and thorny ethical issues that bear on while genome sequencing. This stuff is coming to the primary care exam room fairly soon, and we are seriously advised to understand what it entails. to wit, from the episode two transcript:
...Think about that, five thousand genes, all sorts of categories we've been talking about, dominant, recessive, pharmacogenomics, and some other things, we put on a one page report for a doctor. 'Cause you know what? They don't wanna learn the discipline of genomics, they just wanna know what's useful to their patient.
And these are primary care doctors?
Primary care doctors.
This is their family doctor, their internist, the person they go to first when they have a sniffle or they're not sure what's going on, so these are not geneticists or genetic counselors, these are the people who will be dealing with this information for hundreds of millions of us real soon now.
And it sounds absurd when you think about it, 'cause genomics is so complicated, you need your specialist. But look, primary care doctors interpret x-rays without being nuclear physicists, they interpret chemistry reports without being chemists, it's really a matter of packaging this and directing them with sufficient clinical support that if they get confused they have somebody to turn to. That's a kind of heretical idea honestly, we have said, "Genetics is so complicated and so scary, only the geneticists should hold onto it", it doesn't make me very popular among many of my confreres in genetics because what I'm saying is, "You know what guys, this is too big for our small specialty, this is something that every doctor's gonna have to deal with."
So we created a one page report, and then we didn't just throw it out there, we put all sorts of safety nets in place. This taping reminds me, we audio taped every interaction between that primary care doctor and that patient, and we transcribed it, and we examined it for errors. We followed their electronic health record in real time to make sure they weren't even ordering something inappropriate… 


THE Health IT event of the year.
I started covering it in 2012.

See their selected 2017 Conference videos. I was always sitting front-row center.

More to come...