The KHIT Blog: "All of Us?" "Personalized Medicine?"

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.

MONDAY UPDATE

From Scientific American:

POLICY & ETHICS
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."
ERRATUM

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

WED MAY 9TH UPDATE

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...

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Brave New Health

Commonwell Health Alliance

Another important read (pdf)

I love this kind of stuff. It sustains and humbles me. "As politicians, advertisers, salesmen, and propagandists for various political, economic, moral, religious, psychic, environmental, dietary, and artistic doctrinaire positions know only too well, fallible human minds are easily tricked, by clever verbiage... Common language—or at least, the English language—has an almost universal tendency to disguise epistemological statements by putting them into a grammatical form which suggests to the unwary an ontological statement. A major source of error in current probability theory arises from an unthinking failure to perceive this."

Quotes

"An economist is a person who sees something that works in practice and tries to figure out whether it will work in theory."

- J.D. Kleinke, medical economist
___

"The only person who enjoys change is a baby with a wet diaper."

"Every misspent dollar in our health care system is part of somebody's paycheck.

- Brent James, M.D., M.Stat

“We could do healthcare, at markedly higher quality, for everyone in this country, without rationing or denying anybody the care that they need, without having the government dictate how doctors practice or whether hospitals could expand, at half the cost we do it now.”

- Health Care Futurist Joe Flower

Most of the sciences, unlike parts of medical science, are not concerned with the impossible. There is not complementary and alternative physics, or chemistry, or biochemistry, or engineering. These disciplines compare their ideas against reality, and, if the ideas are found wanting, abandoned."

- Mark A. Crislip, MD

"Q: How much alcohol is too much?
A: More than your doctor drinks."

- a physician I once heard speak during a CME presentation

“Just because science doesn’t know everything, doesn’t mean you get to fill in the gaps with whatever fairy tale most appeals to you.”

- Dara O’Briain

'[I]t is one small step from using the computer for "helping" doctors to monitoring them, judging them, dictating to them what to do, and withdrawing payment for computer non-compliance. The use of computer data is a multi-edged sword. It can be used for the "good," facilitating diagnosis and treatment and making it more accurate and up-to-date, and for “evil,” invading privacy, inviting security breechs, and making decisions based on the opinions of remote authorities rather than those present at the patient-doctor encounter.'

- Richard Reece, MD

“[T]here ARE statistics which are non-political. Just because The Washington Post/Fox News reports the temperature is 75 degrees doesn’t mean it’s really snowing and sunscreen is a liberal/conservative plot. Even if you earn a living being ideological.”

- Michael L. Millenson

"It is a generally a fairly convincing argument that people shouldn’t have to be subsidized to undertake a change which is in their best interest.

The reconciliation seems to be that EHR is not supposed to make a doctor’s practice more efficient and higher quality. It is supposed to make the system of care more efficient and higher quality, which is not the same thing. Those of you who took calc recall that maximizing the total of variables is not achieved by maximizing any one variable and this is a perfect example of that.

Those of you have served in combat certainly noticed that too — if everyone works as a team the unit takes fewer casualties. If you try to save your own hide, you might, but at the expense of more casualties overall."

- Al Lewis

"There are two ideas to keep in mind about Bayesian reasoning and how we tend to mess it up. The first is that base rates matter, even in the presence of evidence about the case at hand. This is often not intuitively obvious. The second is that intuitive impressions of the diagnosticity of evidence are often exaggerated."

- Daniel Kahneman, "Thinking, Fast and Slow"

"Physicians apply advanced scientific knowledge, but they must do so without the favorable conditions that experimental scientists create for themselves. Multitasking is forced on physicians, often in chaotic environments and under severe time and resource constraints."

- Lawrence and Lincoln Weed, "Medicine in Denial"

"It’s time to stop the whining about Obama care and acknowledge we already have universal health care. We just pay for it in the stupidest way possible that ensures problems are that much more disastrous and complicated when they’re finally treated."

- Mark Hoofnagle, MD, PhD

"Every act of conscious learning requires the willingness to suffer an injury to one's self-esteem. That is why young children, before they are aware of their own self-importance, learn so easily."

- Thomas Szasz, MD
___

"Of course, one reason that process metrics* are so popular is that processes are much easier to define and measure than outcomes."

- The Skeptical Scalpel
___

"There is an “illusion of validity” for any random data point, a seductive sense that is colored by what we hope will be true. Mountains of pharmaceutical claims are often made from mere molehills of data."

- Danielle Ofri, MD
___

"Joy empowers people. It is a source of energy that enables people to hope and plan and change their lives for the better. Spend some time around someone who is relentlessly negative and how do you feel–drained, right? More and more research shows that joy is not something that just happens to you, like a bolt of lightening out of the blue. Joy is, instead, a habit to cultivate. Negative thinking and despair are the crabgrass of our souls–weeds that take root and spread, sometimes to all areas of life. Joy, in contrast, is a soul’s rose–hardy when cared for, able to put down roots over time and withstand disease and extremes. Like a rose, however, your joy can become blighted from neglect or harsh conditions. We all need to tend to our joy–to prune away the badness, and to know that, even though it may look like a prickly bare root, if you invest time in a joyous outlook, gorgeous things will bloom, even in the harshest conditions."

- Dr. Jan Gurley
___

"'Solutions' exist only in mathematics."

- Karen Martin
___

"The issue of how to regulate clinical software is, in the long run, indistinguishable from the issue of how to regulate medicine. The only difference is that medicine is practiced in the open, without secrecy, subject to peer review, and under a merit-based state license."

- Adrian Gropper, MD
___

"Economist, rope, tree: some assembly required."

- Source unknown

DISCLAIMER:

I write this blog wholly on my own time and my own dime. The views proffered are expressly my own as a concerned and active citizen/taxpayer (in addition to being the result of my substantive experience in the various IT fields), and in no way reflect any policy views of my former employer, notwithstanding that some of the thinking has indeed obviously been spurred by the implications of the work with which I have been doing for them.

FAIR USE POLICY
I cite a ton of news and web sources spanning the breadth of relevant technical and policy domains, sometimes at substantial length. I believe I remain well within the bounds of "Fair Use," as [1] I am not doing any of this for profit, [2] I always provide attribution and links -- which, [3] far from negatively impacting any copyright holders' commercial interests, might actually increase traffic to and interest in their offerings.

Nonetheless, should I post anything of yours regarding which you have any objection, just let me know and I will remove it forthwith.

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Sunday, May 6, 2018

"All of Us?" "Personalized Medicine?"

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