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Monday, December 31, 2018

My 2018 in 3 words: grief, gratitude, and anger

It's obviously more complex than that (and there is some overlap among these categories), but those three words come most readily, succinctly to mind.

Still trying to wrap my head around having now lost both of my daughters to cancer. I lived for my kids. See "A tale of two sisters."

There will be much more of their stories to tell. One task for 2019.

April 27th, 2018, about 5 hours before Danielle peacefully departed this life.
Since 2017 I've also lost a number of long-time dear friends -- Kurt Kolstad, Mike Kinder, Rick Stevens, and Joey Turner. Those losses continue to sting. But, we all have to deal with such pain. Look out over any crowd, there's a lot more quiet mourning happening all the time than we might unreflectively assume.

First, everyone in our family and huge circle of friends stepped up for us repeatedly without fail across the wrenching course of Danielle's illness and death. I can never thank you all enough.
Second, my wife and best friend of nearly 45 years -- she, the Former Evil Stepmother Now Beatified -- did most of the heavy lifting, especially toward the end. I got sole custody of the girls in 1974. Cheryl has been with me every step of the way. I am not worthy (BTW, today's her birthday. Happy Birthday, sweetie!).

Finally, my cardiologist (who prefers to not be named), my heart surgeon Dr. Ramesh Veeragandham, and the entire Muir team who saved my life. I was headed for either a stroke or fatal heart failure. Ironically, the entire experience was the least stressful episode of the year. I discharged early from cardiac rehab PT on December 18th. My cardiologist told me on the 14th "I don't need to see you for a year." He also told me my getting back into my absurd full-court pickup Jones is a realistic goal. Check Ball...

Build a wall, indeed. The less said about this absurd human wrecking ball, the better. One "Angry Democrat" here, that's for sure.

Wishing you all a healthy, happy, and prosperous 2019. I hope to be Busking in Baltimore by summer, and hanging with our son Matt and his fabulous Eileen.


I would be remiss to not shout out special thanks to Eileen's delightful aunt Maggie Sam Sheehan and her equally delightful partner Dr. George Brouillet for their gracious hospitality and friendliness over the Christmas holiday. Just wow.


Oh, and Roll TIDE!

I'm Ranger, and I approved this blog post.

Thursday, December 27, 2018

2019 in the health care space?

"I never make predictions, especially about the future." - Yogi Berra
"The great thing about being a health care futurist is that you never have to update your slides." - Health Care "Futurist" Ian Morrison
LOL. Ian also once quipped during a Health 2.0 Conference Keynote "I've got slide decks older than some of my clients."

Below: this is an actual thing.

"APF." Not kidding. Hmmm... Wonder if Ian is a member? (As well as my equally cool Futurist friend Joe Flower? And, how about Jacob Ward?)
From the APF website: "What is a Futurist? A professional futurist is a person who studies the future in order to help people understand, anticipate, prepare for and gain advantage from coming changes." Okeee-dokee, then. "studies the future"? (Wiki page on "Futurist.")
Michael Burry MD, now there was "Futurist" ("The Big Short" guy).

Stay tuned. Just got home from a Christmas trip back to the Baltimore area to see our son Matt. Met the most gracious, spectacular people in his circle. Stayed silent about being gone on social media, for what should be obvious reasons.

First, some random stuff in the waning 2018 days.

Finished this book while gone:

Highly recommended. A comprehensive, scholarly, accessible (and non-partisan) history of the evolution of the space. From the Amazon blurb:
Written for nonexperts, this is a brisk, engaging history of American healthcare from the advent of Medicare and Medicaid in the 1960s to the impact of the Affordable Care Act in the 2010s. Step by step, Jonathan Engel shows how we arrived at our present convoluted situation, where generic drugs prices can jump 1,000 percent in a day and primary care physicians can lose 20 percent of their income at the stroke of a Congressional pen.

Unaffordable covers, in a conversational style punctuated by apt examples, topics ranging from health insurance, pharmaceutical pricing, and physician training to health maintenance organizations and hospital networks. Along the way, Engel introduces approaches that other nations have taken in organizing and paying for healthcare and offers insights on ethical quandaries around end-of-life decisions, neonatal care, life-sustaining treatments, and the limits of our ability to define death. While describing the political origins of many of the federal and state laws that govern our healthcare system today, he never loses sight of the impact that healthcare delivery has on our wallets and on the balance sheets of hospitals, doctors' offices, government agencies, and private companies.
I'm already rather well-read up on this type of material, but Jonathan's was thoroughly enjoyable and instructive nonetheless. I would encourage everyone to read it, health care professionals and lay people alike.

Gonna be starting his latest release shortly.

Again, the Amazon blurb:
The diet and weight-loss industry is worth $66 billion – billion!! The estimated annual health care costs of obesity-related illness are 190 billion or nearly 21% of annual medical spending in the United States. But how did we get here? Is this a battle we can’t win? What changes need to be made in order to scale back the incidence of obesity in the US, and, indeed, around the world? Here, Jonathan Engel reviews the sources of the problem and offers the science behind our modern propensity toward obesity. He offers a plan for helping address the problem, but admits that it is, indeed, an uphill battle. Nevertheless, given the magnitude of the costs in years of life and vigor lost, it is a battle worth fighting.

Fat Nation is a social history of obesity in the United States since the second World War. In confronting this familiar topic from a historical perspective, Jonathan Engel attempts to show that obesity is a symptom of complex changes that have transpired over the past half century to our food, our living habits, our life patterns, our built environments, and our social interactions. He offers readers solid grounding in the known science underlying obesity (genetic set points, complex endocrine feedback loops, neurochemical messengering) but then makes the novel argument that obesity is a result of the interaction of our genes with our environment. That is, our bodies have always been programmed to become obese, but until recently never had the opportunity to do so. Now, with cheap calories ubiquitous (particularly in the form of sucrose), unwalkable physical spaces, deteriorating rituals and norms surrounding eating, and the withering of cooking skills, nearly every American daily confronts the challenge of not putting on weight. Given the outcomes, though, for those who are obese, Engel encourages us to address the problems and offers suggestions to help remedy the problem.
Hmmm... this quote comes to mind:
“Medicine is supposed to be about helping you through the accidents — the misfortune of a genetic disease, the misfortune of a trauma, the misfortune of some pathogen. Nobody went to medical school to babysit someone through a life of self-inflicted misery because of two deadly habits: sedentarism and excessive consumption of refined carbohydrates.”Greg Glassman, CEO, CrossFit Health
Glassman has a point, but I think things are a good bit more complex than that.

Like I said, stay tuned. lots to ponder and write about (still dragging my butt finishing up several other books in chronic, halting progress). We got home about 1 a.m. Gotta go fetch the dogs from vet/boarding. Can't wait to see that bill. Ranger is still having persistent ear infection problems.


From my latest hardcopy snailmail edition of Science Magazine:

apropos of my prior riffs on climate change,
…[T]he deeper cause of the ecological crisis: a pervasive worldview that imbues the trends of more with a cachet of inevitability and legitimacy. This worldview esteems the human as a distinguished entity that is superior to all other life forms and is entitled to use them and the places they live. The belief system of superiority and entitlement—or human supremacy—manifests in a range of anthropocentric commonplace assumptions, linguistic constructs, institutional regimes, and everyday actions of individual, group, nation-state, and corporate actors. For example, the human is invested with powers of life and death over all other beings and with the prerogative to control and manage all geographical space. The all-encompassing manifestation of the belief system of human supremacy is precisely what constitutes it as a worldview…
From "Reimagining the human."
Beyond Human Dominance
The dominant framework of tech
nofixes, technological schemes, and fine-tuning efficiencies is by itself no match for the tidal wave of human expansionism expected in this century. Looming before us is the imminent escalation of food, energy, materials, and commodities production, and resulting increases in wildlands destruction, species extinctions, wildlife extirpations, freshwater appropriation, ocean degradation, extractionist operations, and the production of industrial, pesticide, nitrogen, manure, plastic, and other waste—all unfolding amid climate-change ordeals.

In the face of this juggernaut, a singular focus on a techno-managerial portfolio seems fueled by a source other than pragmatism alone. That portfolio—which would include such initiatives as climate geoengineering, desalination, de-extinction, and off-planet colonization—is in keeping with the social rubric of human distinction. The prevalent corpus resonates with a Promethean impulse to sustain human hegemony while avoiding the most expeditious approach to the ecological predicament—contracting humanity's scale and scope by means that will simultaneously strengthen human rights, facilitate the abolition of poverty, elevate our quality of life, counter the dangers of climate change, and preserve Earth's magnificent biodiversity.

To pursue scaling down and pulling back the human factor requires us to reimagine the human in a register that no longer identifies human greatness with dominance within the ecosphere and domination over nonhumans…
 Good luck scaling back our speciocentric hubris.

See all the articles under Tomorrow's Earth.



Interesting, in light of the foregoing on "reimagining the human." From The Atlantic:
An Elephant’s Personhood on Trial
A legal case involving a famous solitary elephant poses a fundamental question about animals’ rights.
"Personhood?" Yeah. Some of us want to bestow it on human zygotes.

BTW, see EO Wilson's "Half Earth."


This issue is jammed with great stuff. to wit,

Revealing the brain's molecular architecture
The PsychENCODE Consortium

The brain, our most complex organ, is at the root of both the cognitive and behavioral repertoires that make us unique as a species and underlies susceptibility to neuropsychiatric disorders. Healthy brain development and neurological function rely on precise spatiotemporal regulation of the transcriptome, which varies substantially by brain region and cell type. Recent advances in the genetics of neuropsychiatric disorders reveal a highly polygenic risk architecture involving contributions of multiple common variants with small effects and rare variants with a range of effects. Because most of this genetic variation resides in noncoding regions of the genome, establishment of mechanistic links between variants and disease phenotypes is impeded by a lack of a comprehensive understanding of the regulatory and epigenomic landscape of the human brain…
Man, I've been reading all day. My brain is tired...

Developments in the neuroscience area will likely enhance progress in AI/ML, I would think. Expect significant advances in the coming year.


This book was reviewed in this foregoing cited issue of Science Magazine:

"Off topic?" Nah.
...Maybe it’s a tinkerer’s curiosity that turned me into a scientist. Early on, physics allowed me to explore the sprockets and gears of the universe and the very forces that control our lives. Looking for more challenges, I turned later to the complexities of networks and data. For a vigilant asker-of-questions, I’ve chosen the right corner of the scientific world to call home. As long as a line of inquiry is based on numbers—the more the merrier—I can pursue it doggedly, following its scent through the maze of data now available to researchers in our hyper-connected, technological world. Hunting down an answer inevitably leads to more questions, new possibilities that hover like gnats on the periphery of any research I conduct. I try to swat them away and stay focused on the task at hand, but I’m not that different from the kid I once was, stubbornly asking “Why?” in response to… well, pretty much anything. It is the quest for answers that gets me up in the morning and keeps me up at night.

These days I run the Center for Complex Network Research, in Boston, where my job is exploring the “why” behind topics as varied as how people or molecules interact, where and how links form, and what our interconnectedness can tell us about society or our biological origins. We’ve examined the topology of the World Wide Web. We’re looking at how tiny hiccups in our genetic networks lead to disease. We’re exploring how our brains control their billions of neurons and how molecules in food attach to our proteins, ensuring our long-term health.

I love this kind of stuff—the math behind our social fabric, the way numbers provide a framework for understanding the essence of our connectedness. When I use models and tools to delve into unlikely topics for scientific analyses, these frameworks inevitably deepen our knowledge…

Barabási, Albert-László. The Formula (pp. 4-5). Little, Brown and Company. Kindle Edition.
So much to learn, so little time.


Stay tuned. For openers, Forbes' "Top 8 Healthcare Predictions for 2019." Not sure that I'm buyin' a lot of that at first blush.

Erratum: BobbyG on "The Future of Science" in 2016.

It’s December 30, 2018.

Healthcare is complex. Simple solutions are useless. Any simple picture of the future is a lie. Simple techno-optimism or innovationist neophilia get us nowhere…

Simple futurism is entertainment. It points at each shiny thing—AI, contractual blockchain, virtual worlds, augmented reality, cell transformation, haptic rebuilds—and says, “Wow! Look at this.” It’s a Jetsons way of looking at the future, as real as using the Flintstones as a guide to the past.

Thinking about the future is a complex business. It requires clarity, penetration, a broad view, and the insights of complexity science. Futurism based on the insights of complexity is a tool for thinking, planning, strategizing…

These skills can be learned…

A futurism based on complexity looks at every element, shiny, dull, or invisible, and asks:

  • “What is it for?”
  • “How does it get its energy?”
  • “How does it affect other elements?”
Complex futurism can connect the dots and the 3-D networks of dots building out over time to paint the pictures of future scenarios, of ways the future could really turn out, what will take us there, and what strategies we might employ to meet them…

Healthcare is changing — consolidation, new tech, political chaos, a vast and growing IT overburden, shifting rules, ever-rising costs, new solutions, business model experiments. And it will continue to do this for some time...


Via STATnew:
What will 2019 bring for science and medicine? We asked the experts

Just got what will likely be my last 2018 Humana EoB statement in the mail. Year-to-date (thru 12/24) "total billed charges," just a tad more than $544,000 (those BS "chargemaster" prices). Mostly evrything having to do with a minor surgery (large inguinal hernia) and a major one (open heart aortic valve replacement).

I have no way to know which providers actually got how much (the Medicare, Humana, and Silverscripts EoBs across the year each run to many pages of obtuse FFS detail). And, I've not really tallied up my own 2018 OoP (out-of-pocket). It was plenty.

Suspect that in the aggregate, reimbursements have been on average perhaps ~25% of "list." Fair?

More to come...

Sunday, December 16, 2018

Is Obamacare "unconstitutional?"

Texas Federal District Court judge Reed O'Connor thinks so [55 pg pdf].
The United States healthcare system touches millions of lives in a daily and deeply personal way. Health-insurance policy is therefore a politically charged affair—inflaming emotions and testing civility. But Article III courts, the Supreme Court has confirmed, are not tasked with, nor are they suited to, policymaking. Instead, courts resolve discrete cases and controversies. And sometimes, a court must determine whether the Constitution grants Congress the power it asserts and what results if it does not. If a party shows that a policymaker exceeded the authority granted it by the Constitution, the fruit of that unauthorized action cannot stand. 

Here, the Plaintiffs allege that, following passage of the Tax Cuts and Jobs Act of 2017 (TCJA), the Individual Mandate in the Patient Protection and Affordable Care Act (ACA) is unconstitutional. They say it is no longer fairly readable as an exercise of Congress’s Tax Power and continues to be unsustainable under the Interstate Commerce Clause. They further urge that, if they are correct, the balance of the ACA is untenable as inseverable from the Invalid Mandate.

Resolution of these claims rests at the intersection of the ACA, the Supreme Court’s decision in NFIB, and the TCJA. In NFIB, the Supreme Court held the Individual Mandate was unconstitutional under the Interstate Commerce Clause but could fairly be read as an exercise of Congress’s Tax Power because it triggered a tax. The TCJA eliminated that tax. The Supreme Court’s reasoning in NFIB—buttressed by other binding precedent and plain text—thus compels the conclusion that the Individual Mandate may no longer be upheld under the Tax Power. And because the Individual Mandate continues to mandate the purchase of health insurance, it remains unsustainable under the Interstate Commerce Clause—as the Supreme Court already held. 

Finally, Congress stated many times unequivocally—through enacted text signed by the President—that the Individual Mandate is “essential” to the ACA. And this essentiality, the ACA’s text makes clear, means the mandate must work “together with the other provisions” for the Act to function as intended. All nine Justices to review the ACA acknowledged this text and Congress’s manifest intent to establish the Individual Mandate as the ACA’s “essential” provision. The current and previous Administrations have recognized that, too. Because rewriting the ACA without its “essential” feature is beyond the power of an Article III court, the Court thus adheres to Congress’s textually expressed intent and binding Supreme Court precedent to find the Individual Mandate is inseverable from the ACA’s remaining provisions…

Recall my prior musings "Obamacare is a Great Mess."

See also "Vote like your health care coverage depends on it, because it does." Lots of links there to my various postings on health coverage policy.

You can also plumb the PDF mind-numbing entirety of the PPACA ("Obamacare") here. You can search and note that the law lacks a legislative staple "severability" clause. A major Oopsie**. You can also search "the Secretary" and find 909 hits, almost all of them going to regulatory discretion accorded the HHS Secretary. File under "be careful what you ask for" in light of change of administrations.
** Or, was it "a feature, not a bug" -- tactically intentional? i.e., to prevent a potential judicial "death by a thousand cuts?"
UPDATE: see "The Texans Challenging Obamacare Have No Standing."

O'Connor's decision is certainly bound for appellate and likely subsequent SCOTUS review.

I may have to re-write my Obamacare song.


"Although the United States does not, more than 130 countries recognize a constitutional right to health care. That’s true across many different health-care systems, some nationalized and some mixed public-private systems."

My grad school analytical paper on the JAMA PNHP Single Payer proposal is now 24 years old [pdf].


University of Google Medical School?" Unaccredited. "Fake news threatens our democracy. Fake medical news threatens our lives."


From the Amazon blurb:
Unaffordable covers, in a conversational style punctuated by apt examples, topics ranging from health insurance, pharmaceutical pricing, and physician training to health maintenance organizations and hospital networks. Along the way, Engel introduces approaches that other nations have taken in organizing and paying for healthcare and offers insights on ethical quandaries around end-of-life decisions, neonatal care, life-sustaining treatments, and the limits of our ability to define death. While describing the political origins of many of the federal and state laws that govern our healthcare system today, he never loses sight of the impact that healthcare delivery has on our wallets and on the balance sheets of hospitals, doctors' offices, government agencies, and private companies.
Stay tuned.

More to come...

Wednesday, December 12, 2018

The Amazon Health IT play

Recall that I recently posted on Amazon's AWS machine learning open boot camp initiative.

OK, check this out:
Amazon will reportedly sell software that reads medical records
Electronic records are a famously contentious area

Amazon reportedly plans to start selling software that can read medical records and make suggestions for improving treatment or saving money, according to The Wall Street Journal.

The program scans medical files to pick out relevant information such as the medical condition and patient’s procedures and prescriptions. While other algorithms that try to do the same thing have been stymied by doctors’ abbreviations, Amazon claims to have trained its system to recognize the idiosyncrasies in how doctors take notes, sources told the WSJ. The company had already developed and sold this same software to other businesses, including ones focused on travel booking and customer service. For Amazon, this is another move into the health care market on the heels of the retailer buying the online pharmacy PillPack in June…

Given that Amazon already had the text-analysis technology, expanding into the health care market makes sense for the corporate giant. But the area of electronic health records is famously contentious. Though there has been a push to digitize medical records, the tangled evolution of e-health technology has, for many patients, led to a fragmented paper trail filled with gaps. In the recent, evocatively titled New Yorker article “Why Doctors Hate Their Computers,” physician Atul Gawande writes about how doctors are frustrated with the entire process, and observes that the various software systems for health records seem to have helped lead to burnout…
This certainly warrants watching. Could be good, providing de facto actual "interoperability." Could also present a host of vexing ethical conflict of interest problems. Think about it.
"The program scans medical files to pick out relevant information such as the medical condition and patient’s procedures and prescriptions..."
OK, any time electronic patient-identifiable information is created, viewed, edited/updated, deleted, or transmitted by a CE or BA (Covered Entity or its Business Associate), HIPAA (at 45.CFR.164.312 et al) requires that there be an audit trail log documenting date/time, which data, by whom, about whom. Will Amazon be a BA? Or will their software provide such functionality to licensees?

From CNBC:

BTW, also noteworthy here more broadly,
"In the recent, evocatively titled New Yorker article “Why Doctors Hate Their Computers,” physician Atul Gawande writes about how doctors are frustrated with the entire process, and observes that the various software systems for health records seem to have helped lead to burnout."
Yeah, already reported on that. See my post "Epic fail: Atul Gawande on the EHR."

A tangential note of caution for "Amazon HIT":
12 State AGs Sue Electronic Medical Records Company Under HIPAA for Data Breach, a First
A dozen state attorneys general have united to bring the first multistate lawsuit under federal health care privacy law, in connection with a medical records company data breach that put millions of patient records at risk. The lawsuit is part of a growing trend of state enforcement of consumer and data privacy laws, and the first such AG suit under HIPAA.

A dozen state attorneys general have united to bring the first multistate lawsuit under  federal health care privacy law, in connection with a medical records company data breach that put millions of patient records at risk.

The lawsuit is part of a growing trend of state enforcement of consumer and data privacy laws, and the first such AG suit under HIPAA—the federal Health Insurance Portability and Accountability Act of 1996, which requires companies to protect the privacy of patient information. The U.S. Department of Health and Human Services usually enforces HIPAA and the Federal Trade Commission usually enforces consumer data breach violations…
I was our HIPAA staff Lead at my last gig. This stuff still interests me.

How traditional pharmacies can survive the Amazon threat

Are traditional pharmacies doomed to the same fate as Borders, Blockbuster, and Sears? The threat is real.

Companies like Capsule and PillPack are redesigning the pharmacy for the digital age. In addition to making it effortless to get prescription medications, these disruptors are bent on cutting out the physical store. This summer, Amazon bought PillPack, bringing heft, customer-service expertise, and gargantuan corporate ambition to the fight…
Hmmm... Any correlation with the Amazon HIT play?


I "graduate" (discharged) early from cardiac rehab PT next Tuesday. I'm doing quite well, way better than I'd expected. No more need for my BP meds.

Major props to the entire Muir team. Grateful to be alive.

CrossFit is amassing an army of doctors trying to disrupt health care
CEO Greg Glassman believes his program could end chronic disease — and he wants doctors to help him.
By Julia Belluz @juliaoftoronto Dec 13, 2018
Oh, boy... More Disruption, Please...

Excellent article. Read it closely.

ERRATUM: MORE ON CLIMATE CHANGE (and other tech topics)

Nice podcast from Wired:

See my prior climate change posts.


More to come...

Thursday, December 6, 2018

More on climate change and health impacts

From Scientific American:

Also, nice piece at The Atlantic by Vann R. Newkirk II:

Climate change can seem almost too big to fathom. Reports such as the recent National Climate Assessment and the United Nations Intergovernmental Panel on Climate Change’s recent release have made waves by portraying the dire threats of a warming world, making the case that the fundamental fabric of humanity will be degraded without immediate action. But the scenarios—the biblical floods and droughts, the mass migrations of dispossessed people, the creeping seas and the retreating glaciers—have a way of short-circuiting the brain. It’s almost easier to despair or to will oneself into ignorance than to begin to grapple with the future. What are human lives when measured against the coming tempest?

Efforts to assess the exact human costs of climate change, however, have provided new tools for understanding the ways in which those lives will be impacted. A major report published November 28 in the public-health journal The Lancet provides predictions of how climate change is degrading human health, and how it will alter health-care systems in the future. The findings are reliably grim. But in focusing on the health-care implications and the potential damage done to people and their descendants, the report provides a firm backing to the call to climate action. The experts behind the report hope to marry the urgency of climate science with the muscle of America’s most successful and most trusted policy experiment—its public-health system…
Read all of it (including the linked resources therein). The Lancet work can be found here [pdf].
From page 21 of the Report:

Training the Next Generation and Educating the Public on the Health Impacts of Climate Change
Correlates with Lancet Working Group 5: Public and Political Engagement

Healthcare professionals need to be educated about the ways climate change is harming Americans’ health and well-being.These professionals include physicians, nurses, public health workers, and professionals in other health sciences. 

The International Federation of Medical Students Association (IFMSA) has created a 2020 Vision for Climate-Health in Medical Curricula as a call to action to include an element of climate-health in every medical school curriculum by 2020.67 The Global Consortium on Climate and Health Education (GCCHE), hosted at the Columbia University Mailman School of Public Health, has developed Climate and Health Core Competencies for health professional students which can act as an institutional guide.

Recent polls show that nearly half of Americans (49%) are “extremely or very sure” that climate change is happening versus only 7% who are “very sure” climate change is not occuring. Given that the bedrock of public health is education about threats to health, it is critical that health providers inform their patients, communities, and policy makers about the health harms of climate change. 

Evidence shows that primary care providers are among the most trusted voices to deliver this message (Figure 15), while nurses are the most trusted profession in the country across all sectors. It has been shown that educating Americans about the health impacts of climate change can increase public engagement and decrease political polarization.

I keep coming back to the climate change thing because if we don't get a handle on it soon, a lot of other tech topics in the health care space are going to be increasingly moot, as increasing financial resources diverted to exigent disaster relief and recovery crowd out funds for tech R&D and other economic needs.

See some of my prior climate related posts here. And, don't forget Mr. Best Words.

Look closely at the left side vertical descending bars of the Scientific American graphic above. The costs associated with adverse health impacts are projected to significantly outstrip other categories. Our time for continued denial is running out.
“The way I think about it is: Somebody was made sick yesterday from climate change, someone is being made sick today as we speak, and someone is going to be made sick from climate change tomorrow.” - Georges Benjamin, APHA


New post at Naked Capitalism:

The Inconvenient Truth about Climate Change and the Economy

Define the human right to science
Jessica M. Wyndham, Margaret Weigers Vitullo

The adoption of the Universal Declaration of Human Rights (UDHR) by the United Nations (UN) General Assembly will mark its 70th anniversary on 10 December. One right enshrined in the UDHR is the right of everyone to “share in scientific advancement and its benefits.” In 1966, this right was incorporated into the International Covenant on Economic, Social and Cultural Rights, a treaty to which 169 countries have voluntarily agreed to be bound. Unlike most other human rights, however, the right to science has never been legally defined and is often ignored in practice by the governments bound to implement it. An essential first step toward giving life to the right to science is for the UN to legally define it…

The scientific community has contributed three key insights to the ongoing UN process. One is that the right to science is not only a right to benefit from material products of science and technology. It is also a right to benefit from the scientific method and scientific knowledge, whether to empower personal decision-making or to inform evidence-based policy. In addition, access to science needs to be understood as nuanced and multifaceted. People must be able to access scientific information, translated and actionable by a nonspecialist audience. Scientists must have access to the materials necessary to conduct their research, and access to the global scientific community. Essential tools for ensuring access include science education for all, adequate funding, and an information technology infrastructure that serves as a tool of science and a conduit for the diffusion of scientific knowledge. Also, scientific freedom is not absolute but is linked to and must be exercised in a manner consistent with scientific responsibility…

In October 2018, the UN Committee on Economic, Social and Cultural Rights released a list of 29 questions related to defining the right to science [pdf]. Three of the most important questions were: What should be the relationship between the right to benefit from science and intellectual property rights? How should government obligations under the right differ based on the available national resources? What is scientific knowledge and how should it be differentiated, if at all, from traditional knowledge?…

The power and potential of the right to science for empowering individuals, strengthening communities, and improving the quality of life can hardly be overstated. It is time for the UN process to reach a responsible and productive end and for the right to science to be put into practice as was intended when it was first recognized by the United Nations in 1948.
Better late than never, I guess, when it comes to precisely pinning down core conceptual phrases.

Beyond international legal definitions, this goes to issues of "Ethics," no?

apropos of one specific science-technology area and ethics, "Artificial Intelligence," I call your attention here:

From their 2018 Report:
University AI programs should expand beyond computer science and engineering disciplines.
AI began as an interdisciplinary field, but over the decades has narrowed to become a technical discipline. With the increasing application of AI systems to social domains, it needs to expand its disciplinary orientation. That means centering forms of expertise from the social and humanistic disciplines. AI efforts that genuinely wish to address social implications cannot stay solely within computer science and engineering departments, where faculty and students are not trained to research the social world. Expanding the disciplinary orientation of AI research will ensure deeper attention to social contexts, and more focus on potential hazards when these systems are applied to human populations.
That's interesting. I am reminded of my cite of Dr. Rachel Pearson's book (MD, PhD) and her scholarship in the "Medical Humanities." Interdisciplinary synergy.


Saw an MSNBC Ali Velshi interview with this Jacob Ward fellow, and was rather impressed. Glad to now be aware of him.

Warrants following.
Could not agree more with that statement. Easier said than done. One of my favorite "Futurists," Ian Morrison, joked during a Health 2.0 Conference that "the benefit of being a Futurist is that you never have to change your slides."

Good writer, Jake Ward. Check this out:

In 1999, a trio of economists emerged from a conference at the University of California, Los Angeles, squinting without sunglasses in the unfamiliar sun, and began a slow walk through the hills overlooking the city. The three of them — a Harvard economist-in-training, Daniel Benjamin, and the Harvard economists Edward Glaeser and David Laibson — were reeling. They had just learned about a new field, neuroeconomics, which applies economic analysis to brain science in an effort to understand human choices. Now they were strolling through the taxonomy of midday joggers and dog-walkers in Los Angeles, talking all the while about how people become what they are. Benjamin recalls feeling very out of place. “Everyone was so beautiful,” he says.

The economists spent the walk discussing what else they could measure across such a wide variety of human beings. By the time the sun began to set, the conversation landed on the very building blocks of life. “If economists are studying the brain,” Laibson asked, “what about studying genes?”

At that time, the standard method for connecting genes to human outcomes was to look for connections between specific DNA clusters and specific conditions in the lives of people who share those genes. B.R.C.A., perhaps the best-known gene sequence in medical science, is associated with a high risk of breast cancer. The A.P.O.E. sequence seems to have a connection to your chances of developing Alzheimer’s. “We thought we were going to find a few candidate genes that were the critical genes for impulse control or risk taking or cognitive ability,” Benjamin says. But when Benjamin, Glaeser and Laibson began writing to the keepers of DNA databases, asking to partner up, they found the geneticists reluctant to join forces. And matching D.N.A. to social outcomes, like educational attainment or wealth, wasn’t just ethically questionable, it was practically impossible…

…researchers themselves acknowledge that it’s hard to think about oneself clearly when subjected to this new [DNA] tool. Benjamin, Conley and several others in the study went ahead and got their own polygenic scores measured. It was for fun, mostly, and no one was unhappy with their results. “But at the moment I did it, I regretted doing it,” Conley says. “It’s a cognitive trap. I immediately realized that at an individual level, it doesn’t predict anything, but it’s human nature to want to know more about yourself. I don’t know …” He pauses for several seconds. “People parse meaningless distinctions.

Benjamin is less conflicted. “I don’t regret doing it,” he says. “But I’m an economist, so I’m trained to always think more information is better.”
Ahhh... more "Omics" stuff. "Geno-economics?" "Neuroeconomics?" What could possibly go wrong with that kind of stuff? The hell with your GPA and GMAT. The hell with your FICO score (some people would end up in the "subprime DNA" demographic). The hell with your VC Startup Seed Round Pitch Deck. Just give us your whole genome assay result. GINA et al be damned.
I know: I should do a startup called™ 'eh? Get me some of that Silicon Valley money. Hmmm.. relatedly, how about™?
Read Jacob's entire NY Times Magazine article. Very thoughtful, analytical take on the issue. He's on Twitter here.
_____________ AnthropoceneDenial


Imagine my surprise.

More to come...

Tuesday, December 4, 2018

Health information, research biases

We are all prone to be afflicted by cognitive biases episodically -- even the "subject matter experts" among us. In health care, biasing ensues way before dx/px/tx efforts take place during patient encounters.

Nive Healthcare Triage video at The Incidental Economist:

Whether unintentional (bad methodology and/or sampling) or deliberate ("spin" to outright fraud), it's a significant problem.


More to come...

Sunday, December 2, 2018

Brief off-topic post on social and "spiritual" healing: the "One Voice" documentary

Our dear friend Mary Ford invited us to attend the Oakland Interfaith Gospel Choir Holiday Concert at the Paramount in Oakland last night. I'd only been dimly aware of them.

My Bad.

iPhone photo from my seat. I ended up lamenting not having brought my big Sony DSLR guns.

It was stunning, inspiring. As an old washed-up guitar player, I've been around a lot of A-list music and performers my whole adult life. This was every bit the equal. World-class. "Twenty Feet From Stardom?" "Muscle Shoals?" "3 Still Standing?" Add another.

And, the band -- sheesh.
I first came to the Bay Area in 1967. The lead singer in our North Beach bar band, Rick Stevens, went on to be the original lead singer for Oakland's eminent Tower of Power band. I still have friendships from those days. I have great affinity for Oakland.
They've produced a finely-crafted, compelling documentary, which has now begun film festival vetting. They sold a limited pre-release stash of DVDs. Of course, I bought one. Watched it today. Brought us to tears. Mostly tears of humbling joy.

"One Voice delves into the lives of four Oakland Interfaith Gospel Choir members and artistic director Terrance Kelly. This film illuminates a group of people from diverse faiths, races, genders, socioeconomic backgrounds, and lifestyles, all with a common goal: to bring joy and inspiration to the stage through black gospel music. By coming from a place of inclusion and acceptance, choir members are able to bridge their differences, embracing the celebrations and challenges that arise along the way.

Gospel music is a rich tradition born from the African-American spiritual during America's slavery period and the civil rights movement. Slaves used gospel to cope through the misery of bondage and civil rights activists sang gospel music to urge action and find courage. In the midst of a country that again finds itself grappling with issues of race, gender equality, and intolerance, a group in Oakland, California, continues the rich historical tradition of using music to promote peace, love, and acceptance.

With a rich history that spans three decades, OIGC has inspired audiences all over the world. The choir delivers its world-class music across the globe, thrilling concert attendees at renowned venues such as the Montreux Jazz Festival and the Molde International Jazz Festival. Yet it stays true to its Oakland roots, lifting the spirits of the homeless, elderly, and inmates throughout the San Francisco Bay Area. From its humble beginning to OIGC’s 30th anniversary celebration on the historic Paramount Theatre stage, this choir continues to circulate musical excellence through the manifestation of One Voice."
The tagline for my friends' band in Las Vegas is "Let the Healing Begin." I got some serious healing last night. Lordy, Mercy!