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Thursday, May 31, 2018

Update on our favorite whipping boy, the EHR

From Trump's "failing NY Times" (I finally ponied up and subscribed, along with forking over at WaPo):

There are times when the diagnosis announces itself as the patient walks in, because the body is, among other things, a text. I’m thinking of the icy hand, coarse dry skin, hoarse voice, puffy face, sluggish demeanor and hourglass swelling in the neck — signs of a thyroid that’s running out of gas. This afternoon the person before me in my office isn’t a patient but a young physician; still, the clinical gaze doesn’t turn off, and I diagnose existential despair.

Let’s not call this intuition — an unfashionable term in our algorithmic world, although there is more to intuition than you think (or less than you think), because it is a subconscious application of a heuristic that can be surprisingly accurate. This physician, whose gender I withhold in the interest of anonymity and because the disease is gender-neutral, is burned out in what should be the honeymoon of a career. Over the years, I have come to recognize discrete passages in a medical life, not unlike in Shakespeare’s “Seven Ages of Man” — we have our med-school equivalent of “the whining schoolboy with his satchel and shining morning face” and the associate professor “jealous in honor, sudden and quick in quarrel.” But what I see in my colleague is disillusionment, and it has come too early, and I am seeing too much of it.

Does this physician recall sitting before me as an idealistic first-year medical student, keen to take the world in for repairs? It was during those preclinical years that the class learned to use the stethoscope, the ophthalmoscope and the tendon hammer, to percuss the body, sounding out its hollows, the territorial boundaries of lung and liver. After the preclinical come the two clinical years, though I think of those phases these days as precynical and cynical. When students arrive on the wards full time, white coats packed with the aforementioned instruments, measuring tape, tuning fork, flashlight and Snellen eye chart, they are shocked to find that the focus on the ward doesn’t revolve around the patients but around the computers lining the bunkers where students, residents and attending physicians spend the majority of their time, backs to one another. All dialogue among them and other hospital staff members — every order, every lab request and result — must pass through this electronic portal, even if the person whose inbox you are about to overload is seated next to you.

In America today, the patient in the hospital bed is just the icon, a place holder for the real patient who is not in the bed but in the computer. That virtual entity gets all our attention. Old-fashioned “bedside” rounds conducted by the attending physician too often take place nowhere near the bed but have become “card flip” rounds (a holdover from the days when we jotted down patient details on an index card) conducted in the bunker, seated, discussing the patient’s fever, the low sodium, the abnormal liver-function tests, the low ejection fraction, the one of three blood cultures with coagulase negative staph that is most likely a contaminant, the CT scan reporting an adrenal “incidentaloma” that now begets an endocrinology consult and measurements of serum cortisol.

The living, breathing source of the data and images we juggle, meanwhile, is in the bed and left wondering: Where is everyone? What are they doing? Hello! It’s my body, you know!…

My young colleague slumping in the chair in my office survived the student years, then three years of internship and residency and is now a full-time practitioner and teacher. The despair I hear comes from being the highest-paid clerical worker in the hospital: For every one hour we spend cumulatively with patients, studies have shown, we spend nearly two hours on our primitive Electronic Health Records, or “E.H.R.s,” and another hour or two during sacred personal time. But we are to blame. We let this happen to our trainees, to ourselves.

How we salivated at the idea of searchable records, of being able to graph fever trends, or white blood counts, or share records at a keystroke with another institution — “interoperability”! — and trash the fax machine. If every hospital were connected, we would have a monster database, Big Data that’s truly big and that would allow us to spot trends in disease so much earlier and determine best practice and predict complications. But we didn’t quite get that when, as part of the American Recovery and Reinvestment Act of 2009, $35 billion was eventually steered toward making medicine paperless.

My A.T.M. card is amazing: I can get cash and account details all over America and beyond. Yet I can’t reliably get a patient record from across town, let alone from a hospital in the same state, even if both places use the same brand of E.H.R., for reasons that are only partly explained by software that has been customized for each site. This is not like sending around a standard Word file. And so, too often the record comes by fax.

What the E.H.R. has done is help reduce medication errors; it is a wonderful gathering place for laboratory and imaging information; the notes are always legible. But the leading E.H.R.s were never built with any understanding of the rituals of care or the user experience of physicians or nurses. A clinician will make roughly 4,000 keyboard clicks during a busy 10-hour emergency-room shift. In the process, our daily progress notes have become bloated cut-and-paste monsters that are inaccurate and hard to wade through. A half-page, handwritten progress note of the paper era might in a few lines tell you what a physician really thought. (A neurosurgeon I once worked with in Tennessee would fill half the page with the words “DOING WELL” in turquoise ink, followed by his signature. If he deviated from that, I knew he was very worried and knew to call him.) But now, with a few keystrokes, you can populate your note with all the listed diagnoses, all the medications, all the labs, all the radiology reports, pages and pages of these, as well as enough “smart phrases” — “.EXT2” might spit out “Extremities-2+ pedal edema, normal pulses” — to allow you to swear you personally examined the patient from head to foot and personally took all the elements of the history, personally did a physical exam separate from the admitting physician that would put Sir William Osler to shame, all of which make it possible to bill at the highest level for that encounter (“upcoding”)...
"For every one hour we spend cumulatively with patients, studies have shown, we spend nearly two hours on our primitive Electronic Health Records..."

I'm still having trouble believing that. It is, however, an empirical matter, vague "studies have shown" anecdotes aside. (See, e.g., my 2014 riff on data-mining the EHR security logs for workflow analytics.)

Read the entire NY Times piece.

apropos, see a couple of my prior posts: "Are structured data the enemy of  health care quality?" and "Clinical cognition in the digital age."

And, of course, we musn't forget English major @Healthcare_Kate's swell "EHRs are a dying technology."

The NY Times article headline cites 'Machine Learning." But, I've noted possible "reproducibility problems."

Finally (for now). see my post "Fix the EHR?" Of course, but how about fixing the clinical process workflows?


Five weeks since my daughter died. Still seems like last night. Sigh...

Next up for me? The SAVR px. Just thrilled. Meeting with my Primary and my Cardiologist tomorrow, then the Cardiac Surgeon next Tuesday. I had a coronary angiogram done. Negative for blockages, so I'm looking at "just" a straight aortic valve job.

BTW, Danielle's former employer has launched the Danielle L. Gladd Scholarship Fund in her honor and memory. I just contributed.


Another cautionary tale regarding medical charts, this one having zilch to do with keystrokes and mouse clicks.
Your Medical Chart Might be Biased. Here’s What Doctors Should Do About It.
Racial disparities in health outcomes are complicated, but this is one place to start.

…A recent paper caught my eye because it captured one of the more subtle aspects of the brew: how we write about patients in the chart. Mary Catherine Beach and her colleagues at Johns Hopkins University were curious about whether our choice of language transmits bias from one medical professional to another. The researchers created a hypothetical case of an African American man with sickle cell disease, a condition that typically requires opiate medications for control of painful flares. They wrote two versions of the medical chart, one with neutral language and one with language—taken from real charts—that could be viewed as more stigmatizing. Medical students and residents were randomized to read one of the charts and then asked about their attitude toward the patient and how much pain medication they would prescribe.

Those trainees who read the chart with the more stigmatizing language exhibited more negative attitudes toward the patient and elected to give less aggressive pain treatment. This result is probably not surprising—we know that black patients tend to receive lower rates of pain treatment. But what is intriguing is how subtle the differences in language were between the two charts. In the first chart, the patient was described as a “28-year old man with sickle cell disease” and in the second chart as a “28-year old sickle cell patient.” Before the symptoms occurred the patient “spent yesterday afternoon with friends” versus “was hanging out with friends outside McDonalds.”

For the physical examination, the doctor observed in the first chart that the patient “is in obvious distress,” and in the second that the patient “appears to be in distress.” A nursing note in the first chart reported that the patient “is not tolerating the oxygen mask and still has 10/10 pain,” and in the second chart that the patient “refuses to wear his oxygen mask and is insisting that his pain is ‘still a 10.’ ”

The descriptions in the second chart weren’t necessarily inaccurate, but together they subtly paint the patient as a less reliable person, someone who perhaps is trying to game the system for drugs. According to Beach, this type of language not only discredits the patient’s report of pain, but highlights details that reinforce negative stereotypes. Medical charts are the primary means of communication among medical professionals, so this sort of language covertly signals to other members of the team that this is a ‘low class’ person who isn’t trustworthy or deserving.

As soon as Beach put it this way, I could see that our supposedly objective medical records contain racially laden dog whistles of the sort that we regularly decry in political speech. In the last two years we’ve gotten more adept at noticing and calling out references to inner cities, illegal aliens, international bankers, Sharia law, and locker-room talk, but we doctors like to think that we treat all our patients equally. We would never think of ourselves as racist or marginalizing. Yet, it’s there in our language…
Seriously doubt that digital "AI/NLU" (Natural Language Understanding) tech portends any help there.

I love Dr. Ofri's work, and have cited her many times.

Numerous relevant Danielle Ofri articles up on Slate, btw.

I'd like to know what Rachel Pearson ("@HumanitiesMD") thinks about the foregoing. I keep bugging her about wanting to read her Doctoral Dissertation, to no avail as yet. "You must be the only person in the country who wants to read it."
Summary of Dissertation:

Objectivity is an epistemological virtue that physicians aspire to embody in our practice. Historians and philosophers have pointed out that objectivity is culturally specific: it varies with time, place, and profession. In pre-clinical training, physicians learn to honor a scientific version of objectivity, in which the self is understood primarily as a potential source of error and “scientific selves” seeks to eradicate the pernicious influence of the self from scientific data. In practice, however, this research identifies that medical objectivity is distinct from scientific objectivity. This dissertation examines memoirs of medical training to understand how physician trainees learn, experience, and use objectivity...
All part of a piece, 'eh?

More to come...

Friday, May 25, 2018

Holmes and Balwani should be indicted

I finished John Carryrou's riveting Theranos expose´ book Bad Blood in short order.

I closely studied every word from cover to cover. It is now awash in Kindle yellow highlighter and bookmarks.

Click to enlarge

It is infuriating.

The latest hardcopy issue of my AAAS Science Magazine showed up in my mailbox yesterday. Among the book reviews:
A biotech company’s blood test proves too good to be true
By Jennifer Couzin-Frankel

In the opening pages of Bad Blood, the chief financial officer for the blood-testing company Theranos meets with his boss, Elizabeth Holmes, a charismatic 20-something Stanford University dropout, and warns her that the company must stop lying to its investors. Holmes’s expression turns icy. She informs him that he’s not a team player. Then she fires him on the spot.

Variations on this story recur throughout this engrossing new book by John Carreyrou, the Wall Street Journal reporter whose articles—guided by dozens of frightened but determined sources—brought down Theranos. The fraud that fooled everyone from Walgreens to U.S. statesmen is almost too fantastical to be believed. Holmes, vindictive and paranoid, and the company’s number two, Ramesh “Sunny” Balwani, a bully almost 20 years her senior with whom she was in a romantic relationship, are pitted against employees frantic that patients will be harmed by a technology that doesn’t work.

Holmes dreamed up Theranos in 2004, while at Stanford. She had recently completed an internship at the Genome Institute of Singapore, where she tested patient samples for the severe acute respiratory syndrome (SARS) virus that had devastated Asia. Determined to transform the clunky testing technology, Holmes imagined an arm patch that would diagnose and treat medical conditions. This morphed into Theranos testing devices, which she claimed could run hundreds of tests on a few drops of blood.

It was a remarkable idea. There was just one problem: Scientists and engineers at Theranos couldn’t produce reliable results, at least not in the time frame demanded. That didn’t stop Holmes and Balwani from raking in hundreds of millions of investor dollars or from deploying the error-prone machines for use on unsuspecting patients…
Science Magazine book reviews typically take the obligatory "Praise-Criticism-Praise" format.

Not this one.

See my many prior posts on Theranos here.

In addition to the tsunami of civil litigation that will surely henceforth consume the lives of Elizabeth Holmes and her thuggish co-conspirator Sunny Balwani, these two should be criminally indicted. John Carryrou's book overflows with comprehensively vetted elements of probable cause for charges of egregious felony fraud.
...[O]n March 14, 2018, the Securities and Exchange Commission charged Theranos, Holmes, and Balwani with conducting “an elaborate, years-long fraud.” To resolve the agency’s civil charges, Holmes was forced to relinquish her voting control over the company, give back a big chunk of her stock, and pay a $ 500,000 penalty. She also agreed to be barred from being an officer or director in a public company for ten years. Unable to reach a settlement with Balwani, the SEC sued him in federal court in California. In the meantime, the criminal investigation continued to gather steam. As of this writing, criminal indictments of both Holmes and Balwani on charges of lying to investors and federal officials seem a distinct possibility.

Carreyrou, John. Bad Blood: Secrets and Lies in a Silicon Valley Startup (p. 341). Knopf Doubleday Publishing Group. Kindle Edition.
An important book, IMO. Reads like a suspense novel. Great job, sir.


CBS "60 Minutes: The Theranos Deception."
John Carreyrou: She [Elizabeth Holmes] is a pathological liar. She wanted to be a -- celebrated tech entrepreneur. She wanted to be rich and famous. And she wouldn't let anything get in the way of that.
Norah O'Donnell: What kind of job did the board do in holding Holmes accountable?
John Carreyrou: This is one of the most epic failures in corporate governance in the annals of American capitalism. They did nothing to verify that her scientific claims were true...
Watch all of it. Read the book.

BTW, random note. Google "Naked Capitalism Horan Uber" and bring a Snickers (you'll be a while; a book's worth of accrued analysis). They make the Theranos fraud look like relative chump change. They're trying to hang on and blow enough smoke long enough to IPO their way out of their multi-billion dollar mess (they lost about $4.5 billion in 2017) and foist their intractable losses onto the markets (meaning, in part, into your retirement funds).


Another "Holy Shit" book. Just started it. Yikes.

ALMOST two decades ago, when I wrote the preface to my book Causality (2000), I made a rather daring remark that friends advised me to tone down. “Causality has undergone a major transformation,” I wrote, “from a concept shrouded in mystery into a mathematical object with well-defined semantics and well-founded logic. Paradoxes and controversies have been resolved, slippery concepts have been explicated, and practical problems relying on causal information that long were regarded as either metaphysical or unmanageable can now be solved using elementary mathematics. Put simply, causality has been mathematized.”

Reading this passage today, I feel I was somewhat shortsighted. What I described as a “transformation” turned out to be a “revolution” that has changed the thinking in many of the sciences. Many now call it “the Causal Revolution,” and the excitement that it has generated in research circles is spilling over to education and applications. I believe the time is ripe to share it with a broader audience.

This book strives to fulfill a three-pronged mission: first, to lay before you in nonmathematical language the intellectual content of the Causal Revolution and how it is affecting our lives as well as our future; second, to share with you some of the heroic journeys, both successful and failed, that scientists have embarked on when confronted by critical cause-effect questions.

Finally, returning the Causal Revolution to its womb in artificial intelligence, I aim to describe to you how robots can be constructed that learn to communicate in our mother tongue— the language of cause and effect. This new generation of robots should explain to us why things happened, why they responded the way they did, and why nature operates one way and not another. More ambitiously, they should also teach us about ourselves: why our mind clicks the way it does and what it means to think rationally about cause and effect, credit and regret, intent and responsibility…

Pearl, Judea; Mackenzie, Dana. The Book of Why: The New Science of Cause and Effect (Kindle Locations 47-61). Basic Books. Kindle Edition.
This one is gonna be fun. Stay tuned. From the Atlantic interview article: Pearl sees it, the field of AI got mired in probabilistic associations. These days, headlines tout the latest breakthroughs in machine learning and neural networks. We read about computers that can master ancient games and drive cars. Pearl is underwhelmed. As he sees it, the state of the art in artificial intelligence today is merely a souped-up version of what machines could already do a generation ago: find hidden regularities in a large set of data. “All the impressive achievements of deep learning amount to just curve fitting,” he said recently...
"If I could sum up the message of this book in one pithy phrase, it would be that you are smarter than your data. Data do not understand causes and effects; humans do."
In short, being unreflectively "data-driven" (that fashionable tech cliche) is a both naive and a cop-out. (Note: some of this will surely go -- at least tangentially --  to the "information ethics" topic of my prior post.)

More to come...

Wednesday, May 23, 2018

"The International Center for Information Ethics?"

Gradually trying to start moving on after losing my daughter. The house is now quiet and empty except for Cheryl and I, after a crazy busy week.

Got a new (promptly reciprocated) Twitter Follow:

Given that my grad degree is in "Ethics and Policy Studies" (an interdisciplinary mashup of PolySci, Econ, applied Philosophy, and Jurisprudence, etc), I am innately attracted to this area. I joined. We shall see.
The International Center for Information Ethics (ICIE) is an academic community dedicated to the advancement of the field of information ethics. It offers a platform for an intercultural exchange of ideas and information regarding worldwide teaching and research in the field. ICIE provides an opportunity for community and for collaboration between colleagues practicing and teaching in the field. It provides news regarding ongoing activities by various organizations involved in the shared goals of information ethics…

Digital Ethics concerns itself with human and digital interactions, including decisions made by humans while interacting with the digital, as well as those decisions made by the digital interacting with humans. Digital Ethics includes, in order of appearance into the field, Computer Ethics, Cyberethics, and AIethics. It places a focus on ethical issues pertaining to such things as software reliability and honesty, artificial intelligence, computer crime, digital transparency and e-commerce. The origins of Digital Ethics are found in the adoption of ethical concerns into Computer Science, as influenced by Norbert Wiener's 1948 Cybernetics.

Media Ethics concerns itself with ethical practice in journalism and information dissemination, and includes issues as diverse as conflicts of interest, source transparency, fairness, fake news, and information accuracy. It aims to represent the best interests of the public through impartiality and balance, recognizing and addressing bias, and strives to respect individual privacy while demanding corporate and government transperency. Media Ethics makes explicit that journalism and media play a large part in shaping worldviews in society and as such demands a responsibility and personal commitment on the part of the journalist.

Alongside ethical considerations for Computer Science, the field of Information Ethics was first encapsulated under the ethical practices of Libraries and Information Science in the late 1980’s and early 1990’s. Library Ethics focuses on issues of privacy, censorship, access to information, intellectual freedom and social responsibility. It addresses copyright, fair use, and best practices for collection development. While Library Ethics originates, in the professional sense, in 19th-century librarianship, it finds its origins in a tradition of information ethics that stretches back to ancient Greece.

Intercultural Information Ethics considers perspectives on information dissemination, ICTs and digital culture from the point of view of both globalization and localization. It provides an account of information culture as originating from all cultures, envisaged through comparative philosophies such as Buddhist and western-influenced information ethics traditions to African Ubuntu and Japanese Shinto ethics traditions in ICTs. In its applied sense, Intercultural Information Ethics strives to move beyond the presumed biases of western and greek-influenced ethical foundations for the field of Information Ethics to include globally diverse information ethics traditions. Philosophically, it endeavors to bridge a notable chasm in the field of information ethics, namely the foundational divide between information ecology and hermeneutics.

Bioinformation Ethics explores issues of information pertaining to technologies in the field of biology and medicine. Traditional concerns in Bioethics such as abortion, organ donation, euthanasia, and cloning form the basis of Bioinfomation Ethics, but are supplemented by questions regarding the influence of digital and information & communication technologies. Bioinformation Ethics addresses rights to biological identity, the use of DNA and fingerprints, the dissemination of biomedical information and equal rights to insurance and bank loans based on genetics.

Business Information Ethics is the convergence of two separate fields of applied ethics, those being Information Ethics and Business Ethics. Business Information Ethics addresses informational considerations of the dissemination of goods and services, including information as a commodity, and provides ethical guidance in the analysis of the use of goods and services, including discourse on the impact they have on society. Business Information Ethics also addresses concerns for journal and information management, and includes the subfield of Organisational Information Ethics, as represented by the Centre for Business Information Ethics (CBIE).

“An important aspect of today's understanding of Ethics concerns issues of individual and social responsibility with regard to the impact of our choices in light of the influence of science and technology. While information and communication technologies open doors to new technological and scientific possibilities, they also act as a catalyst to an unprecedented encounter with otherness, ensuring through digital mediums the en masse collision of hitherto closed ethical systems and cultural worldviews."
-- Rafael Capurro
Yeah. It resonates.

apropos, see my prior post "Artificial intelligence and ethics." See also "The old internet of data, the new internet of things and "Big Data," and the evolving internet of YOU."

Stay tuned.


Also trying to get back on pace with my reading. I'm buried. Just a couple of new ones (I have about a dozen piled up):

I've had a good recurrent go at the massive fraud of Theranos (John Carreyrou's topic in his newly released book). Thus far a compelling "page turner." They've probably already sold movie rights.

More on Michael Pollan and Judea Pearl.

Three others I've recently started:


BTW, speaking of "AI" and "Ethics," see
How the Enlightenment Ends
Philosophically, intellectually—in every way—human society is unprepared for the rise of artificial intelligence.
Henry Kissinger, no less.
...If AI learns exponentially faster than humans, we must expect it to accelerate, also exponentially, the trial-and-error process by which human decisions are generally made: to make mistakes faster and of greater magnitude than humans do. It may be impossible to temper those mistakes, as researchers in AI often suggest, by including in a program caveats requiring “ethical” or “reasonable” outcomes. Entire academic disciplines have arisen out of humanity’s inability to agree upon how to define these terms. Should AI therefore become their arbiter?...
Yeah. One of my grad school profs observed one day that "it is often erroneously claimed that the Nazis 'had no ethics.' They most certainly did -- an aggressive ethos of murderous elimination."


A fashionable (overhyped?) area of AI of late is "NLP" (Natural Language Processing). Within that topical area is the subfield "NLU" (Natural Language Understanding). Notwithstanding its obvious extant (if circumscribed) utility -- e.g., "Siri" --, I have concerns. See my prior post "Assuming / Despite / If / Then / Therefore / Else..." Could AI do "argument analysis?"

It seems rather obvious to me that one foundational element of "Information Ethics" is that of the accuracy of information (in particular information comprising "arguments") -- i.e. rationality in pursuit of truths. If you don't have that, all you have is "noise."

I'd be rather skeptical of trying to sanguinely delegate such tasks to "NLU."

More to come...

Sunday, May 20, 2018

Letting go of my daughter

The Memorial service for Danielle could not have been better. I used the amazing Venice band's song "The Family Tree" for this video slide memory. My sincere thanks to Marky Lennon for the permission to use it.


The “Sissy Tree” is now the “Sisters Tree.” 20 years ago, Sissy had this ficus tree in her apartment in Hollywood. She doted on it. After she died on July 1st, 1998 and we had spread her ashes back in Tennessee, we rinsed out the urn and poured the remainder in the pot of the tree. It now resides in our family room. On Sunday we all gathered and added some of her sister’s ashes to it. It is now The Sisters Tree.


Sunday, May 13, 2018

Mother's Day 2018

I've been having a sad Mother's day. Beyond my own grief, there's this in the news.
Her only chance at life is a new liver, but her insurer said no. Then she wrote a powerful plea to the CEO
I tweeted

The latest compensation data I can find for the CEO of United Health Care is in the neighborhood of $20 million per year.

@UHC tweeted today as well.

No comment.

I'm still kinda speechless. Working on a video for Danielle's Memorial. Haltingly.


A GoFundMe campaign has been launched:

Help Erika Zak Get a New Liver 
Erika, our dear friend and sister, urgently needs a liver transplant to save her life. Now we can help Erika and her family, Scott and Loie, get to the Cleveland Clinic and pay for travel and accommodations, related medical expenses and recovery.

In 2014, Erika was diagnosed with stage 4 colon cancer that had spread to her liver. Her daughter, Loie, was just 3 months old. She underwent more than 70 rounds of chemotherapy and several surgeries. Then came a major blow, followed by a miracle. One of the procedures left her liver severely injured, and it began to fail. But Erika also began taking an immunotherapy drug that her doctors say has killed most, if not all, of her remaining cancer. She was officially listed on the transplant waiting list last week, and will be heading to Cleveland very soon to wait for a liver. For the first time, Erika has a real opportunity to see her sweet daughter grow up. And we can help.

We have seen our friend and sister fighting so hard for this. We have seen such strong support from her family and friends, and what a happy home she has made for Loie. It's been a heartbreaking and awe-inspiring struggle, and they are so grateful for all of your support.
I will certainly contribute.

Also, concerning my late daughter:

In Loving Memory - Announcing the Danielle L. Gladd Scholarship Fund

Stepping Stones Project has created a scholarship fund dedicated to providing Tuition Assistance to honor the memory of our beloved Executive Director, Danielle Gladd. Danielle was part of the Stepping Stones family from 2014 until 2017, when she was diagnosed with pancreatic cancer. She passed away on April 27, 2018. Danielle will be remembered as a strong spirit who was deeply committed to creating experiences for youth that would have long term impacts and affect lives in a positive way. She was our community “center pole” and “mama bear”. We miss her strong presence.

The Danielle L. Gladd Scholarship Fund provides donors the opportunity to provide Tuition Assistance for our program. Tuition Assistance allows youth and families to participate who might not otherwise be able. Danielle exemplified a culture of giving, even personally contributing to make tuition affordable for some families. This fund will provide for a more diverse and inclusive community and help SSP to continue to offer quality Coming of Age programs to more youth and families throughout the San Francisco Bay area.
 We will certainly contribute to that as well.

More to come...

Sunday, May 6, 2018

"All of Us?" "Personalized Medicine?"

The grief at our house is pretty heavy, but I just can't withdraw from the world. Hence this Twitter exchange.

Worth looking into.

After surfing through a lot of the website, I conclude that a lot of the critical Twitter responses are ill-informed and unhelpfully cynical. The pedigrees of the leadership and the IRB (Institutional Review Board) look fine to me (including contributors with explicit "medical ethics" chops).

I like that they include factors that we call "social determinants of health."
What is Precision Medicine?
The All of Us Research Program is part of the Precision Medicine Initiative. Precision medicine is health care that is based on you as an individual. It takes into account factors like where you live, what you do, and your family health history. Precision medicine’s goal is to be able to tell people the best ways to stay healthy. If someone does get sick, precision medicine may help health care teams find the treatment that will work best. This will help give health care providers the information they need to make tailored recommendations, relevant to people of different backgrounds, ages, or regions.
Two books I have in (admittedly halting) progress these days go to social determinants:

I first cited the Matthew Walker book here. Wrote about Dr. Pfeffer's "Leadership BS" book prior to that.

Another book in progress:

Goes to my recurrent "Art of Medicine?" riffs.


From Scientific American:

Can the U.S. Get 1 Million People to Volunteer Their Genomes?
A massive biobank effort, first planned under the Obama administration, launches this week

One of the enduring mysteries of medicine is how individual genes, environment and lifestyle may combine to spark sickness or protect us from it. Unraveling this puzzle remains essential for scientists hoping to achieve the elusive goal of offering tailored treatments or personalized prevention plans.

That’s why Pres. Barack Obama in 2015 announced an ambitious plan to roll out a precision medicine initiative that would aim to enroll a diverse group of one million people. Participants would volunteer, either via their doctors or by signing up online, to submit their medical records to the National Institutes of Health. They would also fill out online surveys about their lifestyles, furnish blood and urine samples, and have their genomes sequenced. Later they might also offer other biological data or even wear health trackers that may not yet exist. Researchers—and members of the public—could apply for access to the anonymized patient data and track individuals’ health outcomes, hopefully gleaning insights about how our individual differences affect health and disease risk.

Three years after unveiling that audacious effort—rebranded as “All of Us” about a year ago—it is only now officially getting off the ground. No genomes have yet been sequenced. Instead, federal workers and clinic partners have enrolled “beta testers” in a pilot phase of the project. About 26,000 volunteers have provided blood or urine samples, and filed out surveys about their health care...
We shall see. I'm considering signing up.

Tangentially apropos (?), see "Susannah Fox on the power of peer-to-peer communities for health." See also "There IS no personalized medicine without AI."

Having a coronary angiogram px Tuesday morning. Thrilled. Precursor to the SAVR px that draws nigh for me.


My cardiologist joked after the px that I have "the arteries of an 18 yr. old." Wonder how much of that goes to my decades-long delusional full-court hoops gym rat obsession? No blockages, no need for stents, no need for bypasses.

It was interesting. Fentanyl sedation (wow). He went in through my right wrist, not the femoral artery. That shortened my post-op recovery by several hours.

A bit of good news for a change (notwithstanding that I still have to do an aortic valve replacement px soon, TBD).

More to come...

Thursday, May 3, 2018

Danielle Leigh Gladd, July 27, 1970 - April 27, 2018

I am rarely at a loss for words (just ask my wife). But, this is one of those times.

A Tale of Two Sisters
We will hold a first memorial service for Danielle at the Mount Diablo Unitarian Church in Walnut Creek on May 19th at 11 a.m. We will also schedule a second memorial in Las Vegas where we all lived for quite some time and have many, many dear friends.

Effusive thanks are owed the oncology staff at Kaiser Permanente in Antioch and the Kindred Hospice folks. We are also grateful beyond words for the sustaining support of friends and family.