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Friday, July 19, 2019

Baltimore: The Real News Network

Nice logo.

Last weekend Cheryl and I were traversing downtown Baltimore on our way to Pigtown when I saw a large sign on the side of a building. Turns out "The Real News Network (TRNN)" is located here (as well as in Toronto). That had escaped me.

I'd been aware of them online for quite a while, given my daily news surfing stops at the Naked Capitalism blog, which routinely features their videos, replete with interview transcripts.

I dig their Mission Statement:
The Real News Network (TRNN) produces independent, verifiable, fact-based journalism that engages ordinary people in solving the critical problems of our times. As legendary journalist Ida B. Wells said, “The people must know before they can act, and there is no educator to compare with the press.”
We examine the underlying causes of the chronic problems, and investigate and report on effective solutions and models for change. We don’t just cover people in high office or limit news to the partisan horse race for power. People who fight for human rights and work for solutions are newsmakers. We believe that real change will be driven by the people who need it most.
While we report on and investigate all important issues of social and economic concern, we consider the climate change crisis an existential threat. In all of our programming and journalism, the impact of environmental degradation and the climate crisis, especially on marginalized people, and the urgency of finding solutions will be front and center. 
Our motto is “The Future Depends on Knowing.”...
"We consider the climate change crisis an existential threat."
I am so with you on that call-out point. See, e.g., here, and here.

One of TRNN's numerous topical areas is that of health.


Yeah. I've been hip to Wendell Potter for a long time.

"Environment" topics?


More and more, I am going to focus on our accruing environmental crises (note plural)--from a pubic health perspective and more. Shaving another 30 seconds off a clinical EHR SOAP Note patient encounter workflow won't mean diddley if we allow our world to turn into a cheesy 'The Day After Tomorrow" disaster flick.
"We examine the underlying causes of the chronic problems, and investigate and report on effective solutions and models for change."
No small tasks. I'll certainly be watching.

UPDATE: ALSO WORTHY OF NOTE

Wendell Potter's initiative.

tarbell.org
"Tarbell is pioneering journalism that informs, galvanizes and changes America.We take a unique approach to coverage of money in policy, not just politics.

We uncover how powerful people and companies use their influence to shape a system that works for them, not you. We highlight solutions to pressing problems. Our fiercely independent, unbiased news inspires our members in all 50 U.S. states to take action.We understand there are stories that matter to all Americans.

We 
believe there’s journalism that can inspire people to see how much we agree. We know people want actionable, evidence-based solutions..."
The foregoing brings back to mind this cool book I reviewed in 2017:


SPEAKING OF "DEMOCRACY"

The Tech Oligarchs Are Going to Destroy Democracy — Unless We Stop Them
Once, the big tech firms embodied American exceptionalism and aspiration. Today, they are strangling these ideals. Government: do something.
Joel Kotkin, for Daily Beast Inside
 


Congressional posturing about tech firms may have quieted for the moment, but the existential crisis that these firms are creating remains as now unchecked. Even faced with opposition on both sides of the aisle, the oligarchs—those five tech giants that now constitute the world’s five most wealthiest companies—continue to rapidly consolidate economic, cultural, and, inevitably, political power on a scale not seen for over a century.

This tiny sliver of humanity, with their relatively small cadre of engineers, data scientists, and marketers, represent a challenge to democracy, competitive capitalism, and the future of the middle class. Given their virtual monopoly status, a laissez faire approach will likely result in more consolidation; only government action of some kind can stop them now. Current concerns are large enough now that both the Trump administration and many Democrats oppose Facebook’s bid to issue its own currency. That’s a hopeful first step.

Historian Jeffrey Winters defines oligarchy as being based on “extreme concentrations” or power and wealth. Whether in ancient Athens or Rome, or contemporary New York or London, this overclass tends to be “unusually resistant to radical dispersions of power.” In our time, the ascendant tech oligarchy, as a recent World Bank Study suggests, have exploited “natural monopolies”—roughly 80- to 90-percent control of most key digital markets —that adhere to web-based business, and have served to further widen class divides not only in the United States but around the world.

The imperative for all oligarchies is to preserve their power. Once the media lights are off, and the posturing is done, the oligarchs can continue  playing a clever double game, making common cause with the defenders of capital and pouring money into the welcoming arms of the conservative think tanks…

 It might seem strange to think that the slick, urbane, and well-educated oligarchs as a greater threat to our future freedom than the blathering apostle of “fake news.” But despite his crude statements, it’s not Donald Trump curbing free speech and consigning even the mildly dissident into digital exile. If he loses next year, Trump will leave office as the bizarre leader of a peasant rebellion, but we could be living with the oligarchs information empire for decades…

…Long after Trump has retreated to his world of golf links and gold-plated faucets, an embarrassment at best, oligarchs like Jeff Bezos, Marc Benioff, and Lauren Jobs, widow of the late Steve Jobs, will have gained ownership over the nation’s fading traditional media.

But the main vehicle for oligarchical wealth comes from the exploitation of personal data, what Alibaba founder Jack Ma calls the “electricity of the 21st century.” These “super platforms,” as one analyst noted, “now operate as “digital gatekeepers” lording over “e-monopsonies” that aim to monitor our lives in ways even the snoop-crazy Chinese would admire. Firms like Facebook and Google seek to ferret out “psychographic” profiles as part of their core business.

We are already headed toward a world controlled by these super-snoopers. With their enormous financial resources and control of the key digital channels, they are positioned to dominate older industries like entertainment, education, and retail, as well as those of the future: autonomous cars, space-exploring drones, and most critically artificial intelligence…

In its earlier iteration, Silicon Valley was a uniquely egalitarian place where outsiders made success and working people had decent incomes. Today, Wired magazine's Antonio Garcia Martinez has labeled Silicon Valley as ‘feudalism with better marketing.” Despite enormous wealth, tech-driven cities like San Francisco and increasingly Seattle have become dysfunctional places, with massive homeless populations and a shrinking middle class. The urban website CityLab has described the Bay Area as “a region of segregated innovation,” where the rich wax, the middle class wanes, and the poor live in increasingly unshakeable poverty…

Once, the tech moguls legitimately could be sold as exemplars of American exceptionalism. But now, if unrestrained, the moguls are likely to be its assassins. Once, it was wise to let them work their magic unimpeded. But now, if we do this, we will create a society that is profoundly hierarchical, uncompetitive, and undemocratic. They need to be stopped, and now, or the world of tomorrow will not be a place we would like our children to inherit.

(Paywalled. Fairly long read. Subscribe. It's worth it.) 
AAAS proposes a "Science of Deliberation" as crucial for functional "democracy."

Assumes that we all want democracy. Enthusiasts of technocracy, "epistocracy," 'libertarianism" (please), aristocracy, autocracy, oligarchy, monarchy, etc., might well (and do) differ. And, in that regard in the wake of "Citizens United," "one person, one vote" is fast becoming "one dollar, one vote" in the U.S.
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More to come...

Wednesday, July 17, 2019

Define "health"


Excellent article at STATnews:
It's time to change the definition of 'health'

The WHO defines health as a state of “complete physical, mental and social well-being and not merely the absence of disease or infirmity.” The Centers for Disease Control and Prevention, along with a range of WHO partners, endorses this definition...

A definition of “complete” health as the absence of disease leaves little space for people with chronic diseases and for managing them in new ways. Together, the increasing numbers of Americans over age 65 (currently 51 million) and even over age 85 (currently 6.5 million), with more than 617 million over age 65 worldwide, along with transformations in disease definitions and treatment, amplify the dissonance between the experience of living long and the definition of health...
Read all of it.

When I signed on to Kaiser-Permanente (Medicare Advantage) in June after our move to Baltimore, I self-rated my "health" as only "fair" on their intake form forced-choice Likert scale question. It's way more complicated than that. But, I do know one thing; were we still under pre-Obamacare "medical underwriting," people like me would be declared "uninsurable" irrespective of our rank-ordered self-assessments.
My "health," like that of many people close to my age (I would speculate) comprises a multidimensional distribution exuding highs and lows and averages along various axes. Given the stresses of the past few years (my 2015 prostate cancer dx and tx; losing a second daughter to cancer; my 2018 open heart SAVR px; our fractious April 2019 transcontinental move), I continue to ail a bit physically. But, I have never been more intellectually and socially engaged notwithstanding. Cognitively, I have to keep on being a (post-mid) "life-long unlearner." Socially, I have to give, give back.
I'll be adding this STATnews item to my list of "definitions" in need of closer scrutiny. 
PHYSICIANS' JOKE
Q: "What's the definition of a 'well person'?"
A: "A patient who has been inadequately worked up."
OF RELEVANCE

Recently at THCB: 
Landmark Results Achieved in Aging and Chronic Disease: Danish Group Extends Disease-free Life by 8 Years
By WILLIAM H. BESTERMANN JR., MD

New Scientific Breakthroughs Can Provide a Longer Healthier Life
Twenty-one years of follow-up comparing usual care with a protocol-driven team-based intervention in diabetes proved that healthy life in humans can be prolonged by 8 years. These results were achieved at a lower per patient per year cost. Aging researchers have been confident that we will soon be able to prolong healthy life. This landmark study shows this ambitious goal can be achieved now with lifestyle intervention and a few highly effective proven medications. These medications interfere with the core molecular biology that causes chronic disease and aging. These same medications will likely produce similar results in patients with congestive heart failure, chronic kidney disease, arterial disease, history of heart attack, hypertension, and angina. Simple medical interventions can extend healthy lifespan today.

Better Chronic Disease Management Can Improve Health and Lower Costs
90% of health care costs come from chronic diseases and aging which are both related. The same biochemistry that causes aging causes chronic disease. Eating processed food, gaining weight, smoking cigarettes, and sitting on the couch accelerate aging and chronic condition development. Those activities switch on genes that should be quiet. Eating real food, avoiding cigarettes, activity, lisinopril, losartan, atorvastatin, metformin, (and spironolactone) are now proven to extend healthy life by 8 years in patients who are at high risk of health catastrophes and early death! These medications all cost $4 a month except for atorvastatin which is $9 a month. The benefits continue even when best practice treatment stops probably because these treatments block signaling from dangerous genes that are inappropriately and persistently turned on…
 Nice. Again, read all of it.

UPDATE ERRATUM

On my iPhone...

Read this book.

Cited it here (scroll down).

REMINDER
h2fallcon.com
UPDATE

It's hot in Baltimore this week.

apropos, see KHN's "Climate Grief."


I know it bums me out.
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More to come...

Monday, July 15, 2019

Biden Cancer Initiative goes dark

In on my iPhone a bit ago,


Well, that didn't last long.

Cheryl and I went to one of their conferences in Concord, California last year. Given our painful personal cancer connection, I quickly put 'em in a links columns hard link here on the blog, wrote 'em up, and reached out to them multiple times asking how we might help.

Not one peep in reply.

Last year they had gross revenue of just under $4 million. No outrageous payroll. Paid their President Greg Simon about $225k. The Bidens took nothing. Nothing untoward that I can see lurking in their IRS 990. (pdf)

At the risk of sounding uncharitable, though, BCI came to seem to me a bit of a well-meaning hobnob-with-VIPs "vanity project." Endless talk-talk-talk "summits" empaneled by clinicians, policy people, celebs, and patients. We already have plenty of those.

I guess it's problematic now, with Joe running for President.

UPDATE: JOE BIDEN OPPOSES "MEDICARE FOR ALL"
Biden proposes massive new Obamacare subsidies, public option in health care plan
Joe Biden is proposing massive new subsidies to make health coverage through Obamacare's exchanges cheaper -- as well as a new "public option" that would allow people to buy into a program his campaign says would be similar to Medicare.

The former vice president unveiled his health care plan Monday morning amid an escalating fight with his 2020 Democratic presidential foes as some more liberal candidates advocate enrolling all Americans in a national health plan, all but eliminating private health insurance.

Vermont Sen. Bernie Sanders is set to deliver a speech making his case for "Medicare for All" on Wednesday, according to his campaign. And California Sen. Kamala Harris, who has similarly backed a single-payer, government-run health program, teased the upcoming rollout of her plan in front of a crowd in New Hampshire on Sunday, too.

Biden, meanwhile, is pushing for a more moderate approach, built on former President Barack Obama's Affordable Care Act.

"We should not be starting from scratch. We should be building from what we have. There's no time to wait," Biden told an audience in Dover, New Hampshire, on Friday.

He said that under his plan, if "you like your employer-based insurance, you get to keep it." Under other leading Democrats' plans, he said, "you lose it, period.”…
Oh, boy... I wrote a post in 2009 titled "Public Optional."

I am reminded of a passage from a David Graeber book:


wherein he asks,
Does this mean that members of the political class might actually collude in the maintenance of useless employment? If that seems a daring claim, even conspiracy talk, consider the following quote, from an interview with then US president Barack Obama about some of the reasons why he bucked the preferences of the electorate and insisted on maintaining a private, for-profit health insurance system in America:
“I don’t think in ideological terms. I never have,” Obama said, continuing on the health care theme. “Everybody who supports single-payer health care says, ‘Look at all this money we would be saving from insurance and paperwork.’ That represents one million, two million, three million jobs [filled by] people who are working at Blue Cross Blue Shield or Kaiser or other places. What are we doing with them? Where are we employing them?”
I would encourage the reader to reflect on this passage because it might be considered a smoking gun. What is the president saying here? He acknowledges that millions of jobs in medical insurance companies like Kaiser or Blue Cross are unnecessary. He even acknowledges that a socialized health system would be more efficient than the current market-based system, since it would reduce unnecessary paperwork and reduplication of effort by dozens of competing private firms. But he’s also saying it would be undesirable for that very reason. One motive, he insists, for maintaining the existing market-based system is precisely its inefficiency, since it is better to maintain those millions of basically useless office jobs than to cast about trying to find something else for the paper pushers to do.

So here is the most powerful man in the world at the time publicly reflecting on his signature legislative achievement—and he is insisting that a major factor in the form that legislature took is the preservation of bullshit jobs…


Graeber, David. Bullshit Jobs: A Theory (p. 157). Simon & Schuster. Kindle Edition.
'eh?

ERRATA


BTW, we've now lived in Baltimore for 3 months, rolled in overland from California on Monday April 15th.

Likin' it. Interesting city. Lots of problems. Hot as Hades this week.


I subscribe to the Baltimore Sun "eNewspaper." It's a daily digital version of the print paper. It's very cool. Love it on my 27" iMac.
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More to come...

Sunday, July 14, 2019

FreeDumb

"Declining vaccination rates not only reflect a great forgetting; they also reveal a population that suffers from overconfidence in its own amateur knowledge. In her book Calling the Shots: Why Parents Reject Vaccines, the University of Colorado at Denver’s Jennifer Reich notes that starting in the 1970s, alternative-health movements “repositioned expertise as residing within the individual.” This ethos has grown dramatically in the internet age, so much so that “in arenas as diverse as medicine, mental health, law, education, business, and food, self-help or do-it-yourself movements encourage individuals to reject expert advice or follow it selectively.” Autodidacticism can be valuable. But it’s one thing to Google a food to see whether it’s healthy. It’s quite another to dismiss decades of studies on the benefits of vaccines because you’ve watched a couple of YouTube videos. In an interview, Reich told me that some anti-vaccine activists describe themselves as “researchers,” thus equating their scouring of the internet on behalf of their families with the work of scientists who publish in peer-reviewed journals..."
From "What the Measles Epidemic Really Says About America."

Good a time as any to bring this book back up.

Tom Nichols' The Death of Expertise shows how this rejection of experts has occurred: the openness of the internet, the emergence of a customer satisfaction model in higher education, and the transformation of the news industry into a 24-hour entertainment machine, among other reasons. Paradoxically, the increasingly democratic dissemination of information, rather than producing an educated public, has instead created an army of ill-informed and angry citizens who denounce intellectual achievement. When ordinary citizens believe that no one knows more than anyone else, democratic institutions themselves are in danger of falling either to populism or to technocracy or, in the worst case, a combination of both.
Because FreeDumb. We Don't Need No Steenkin' Science.

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More to come...

Friday, July 12, 2019

Coming soon, the 2019 Health 2.0 Conference

Health2con.com
My years covering Health 2.0 events were the most fun and educational times. So many smart, energetic people. I lament no longer covering the health tech space in person.

Loved doing my conference photography.
Where are we today? One critical eval over at TechCrunch:
Digital health is growing fast — but at what cost?
Chris Hogg @cwhogg

Silicon Valley is obsessed with growth. And for digital health startups, that obsession is not only misguided, but dangerous.
The prevailing idea in the tech industry is that to succeed, you have to be ready to sell your idea, no matter how far along your idea really is. You’re encouraged to believe in your product even when there is no product to believe in.

And if you’re disrupting the mattress industry or the eyewear sector, maybe that’s okay.

But digital health startups must be held to a different and higher standard. We touch people’s lives, often when they are at their most vulnerable.

The healthcare startups in the news recently — Theranos, uBiome, Nurx, eClinicalWorks, Practice Fusion — seem to have lost sight of that crucial standard. We’ll never know every detail of what happened in these organizations, but one thing seems clear: In the pursuit of growth, they have put the patient second, and suffered as a result…
"Money, money, money, money..."

ERRATA: TWO NEW READS


Stay tuned. I'm never gonna get caught up.

"THE THING DOWN IN THE BASEMENT"

Our "new home" in Baltimore (built in 1935) has a finished basement (where our dogs now hang). It's very quiet. I moved my 27" iMac and peripherals down there today.


Mucho podcasting soon to ensue. Done it before, when I lived in Las Vegas. That was all music stuff. Upcoming will be different. Science/tech policy related topics mostly.
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More to come...

Thursday, July 11, 2019

Play Hard, Party Hard









Old medical joke:
Q: "How much alcohol is too much?"
A: "More than your doctor drinks."
Congratulations, U.S. Women's Soccer World Cup Champs.
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Tuesday, July 9, 2019

Lisa Suennen at NCQA

Lisa rocks.


I've covered her at various health tech conferences (see here as well). She's one smart, perceptive, and funny woman. Put her onstage with Alexandra Drane and they're as good as any pro standup comics.

"NCQA?" "Disruption?"

ERRATUM
UPDATE

Finished her book. Among other virtues, as fine a smackdown of "scientism" as anything I've encountered.
...The prestige of science derives from the assumption that it deals in truth, fact. This is its purpose and tendency, but at no point is the purpose assumed to be fully and finally achieved. Science is, after all, a strategy, a method, not a doctrine. This is the secret of its brilliance, its rigor, its general reliability. But reason is not strictly reason when it is leveraged against a faulty inference—that is, a bad guess. The list I made earlier of the various schools of thought, considered scientific in their time, that undertook to empty the heavens and enlighten humankind by, oddly enough, demonstrating to them that they had neither self nor soul, were a series of bad guesses, not one of them the foundation upon which truly rational or scientific thinking could be based. Some of them, notably racial science and eugenics, played out in atrocities. The question of the existence of God and all the rest is not affected in any way by the ineptitude of the case made against it. The prestige of science should not be affected by the fact that it is vulnerable to misuse. But certainly historical perspective permits us to say that neither science nor reason, properly so called, was implicated in these earlier campaigns against religion. And again, a largely consistent position was maintained through all these shifts in rationalization—no God, no self. Religion could make the humanist case if its defenders were humanists. It could also make a rational and scientific case against scientism, if it were not daunted by the old habit of deference, prejudice turned against itself. The selfish gene should have been laughed off the stage years ago, and it isn’t gone yet... [pp 62-63]
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More to come...

Monday, July 8, 2019

Matthew Holt's 12 rules for health tech startups

12. Hope that you can disrupt health care, but remember that UnitedHealth Group’s revenue is $220 billion and CMS spends $900 billion a year and they both appear mostly powerless to make anything better.
LOL. Read rules 1 - 11 here at Matthew's THCB. They're awesome.

Speaking of "health tech startups,"
My niece's husband Jeff Nyquist is making good progress with his VC-funded company NeuroTrainer. They're expanding their move into the health care space.

ERRATA

I was unaware of Pulitzer-winning novelist, essayist, and writing professor Marilynne Robinson. Finally read her essay in my recent Harpers:
Is Poverty Necessary?
An idea that won’t go away
By Marilynne Robinson


…What really matters here is how people are valued. Democracy assumes that the generality of the population have the wisdom to govern a nation. They are not valued sufficiently to sustain democracy where, finally, the habitability of their place in the world can be sold as a commodity, or where their expectations and hopes can be lowered by fiat. Austerity policies are a collaboration of governments and financial interests. The luxuries we can’t afford under austerity are day care for working mothers and universal health coverage. At the same time, there is unprecedented flaunting of stupendous wealth. We have seen what the Russian in the street is also seeing, and has known for many years—that plutocrats and kleptocrats are the same crowd. What are the consequences for an ordinary Russian of the fact that the world has grown used to seeing hundreds of billions of dollars flow out of a country whose economy is small and whose standard of living must be modest indeed, considering its recent history? Granting that our old adversary must get a laugh out of watching us deal with the foolish and incompetent government it helped us install, it is fair to wonder if Russia finds it worth the investment, assuming this is real money, that is, that it represents a real transfer of wealth. We know that people on this side of the transaction are very happy to believe that it is real—and to sell another overpriced penthouse in Manhattan or a little bit of government influence. Whatever it is, it spends, as they say. I wait to hear from a Russian aluminum worker about the economic and psychological effects of watching oligarchs play with money. This under cover of resurgent nationalism, of course…
Indeed. Well, that led me to this:


This one has jumped my reading queue. I'm a pretty fair writer, but this woman blows me away. I'm about 40% in thus far.
...It is no accident that Marxism and social Darwinism arose together, two tellers of one tale. It is not surprising that they have disgraced themselves in very similar ways. Their survival more than one hundred fifty years on is probably owed to the symmetry of their supposed opposition. Based on a single paradigm, they reinforce each other as legitimate modes of thought. So it is with our contemporary Left and Right. Between them we circle in a maelstrom of utter fatuousness. 

I say this because I am too old to mince words. We have, in our supposed opposition, gone a long way toward making class real—that is, toward cheating people of opportunity. Historically, education has been the avenue by which Americans have had access to the range of possibilities that suit their gifts. We have put higher education farther out of reach of low-income people by cutting taxes and forcing tuitions to rise. And we attack public preparatory education. We make an issue about family background in terms of suitability for college, when in fact anyone who has paid a reasonable amount of attention in a decent high school will be fine in college. Unless he or she is working two jobs to pay for it, that is. I have taught for many years in a highly selective program that attracts students of every background. There is absolutely no evidence that those whose education would be called “elite” are at the slightest advantage. Our prejudices are impressing themselves on our institutions and therefore on the lives of all of us. The willingness to indulge in ideological thinking—that is, in thinking that by definition is not one’s own, which is blind to experience and to the contradictions that arise when broader fields of knowledge are consulted—is a capitulation no one should ever make. It is a betrayal of our magnificent minds and of all the splendid resources our culture has prepared for their use.

Robinson, Marilynne. What Are We Doing Here? . Farrar, Straus and Giroux. Kindle Edition.
 I'd started Arthur Brooks' new book (also excellent), but he'll just have to wait.


Meanwhile, he has an interesting article up at The Atlantic.

The article has an embedded audio of the text. I read through it at listened concomitantly.
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More to come...

Thursday, July 4, 2019

My best to everyone on Independence Day 2019

Wishing everyone a safe and happy July 4th weekend.
Today is the Fourth of July. First, I want to say happy birthday to my two brothers, Bob and Joe, fraternal twins who were born on the 4th. But also happy birthday to America. The 4th is always a good time to reflect on what the American experiment in constitutional democracy really means.

I tend to look at it this way – process is more important than outcome. This is true in the same way it is true for science and critical thinking. Science is a system of valid methods used to build an empirical model of reality. In science, using proper methods is what counts, not the outcome of the experiment. When you put the outcome first, and then use whatever methods necessary to generate the desired outcome, that’s pseudoscience.


In the same way we have a system of government that puts the rule of law, with the Constitution being the highest law, above any particular outcome. It is supposed to be a peaceful and fair method of determining things like law, justice, rights, and the expenditure of common resources. It is valid in that it derives from the people with fair and even representation. Obviously the system is not perfect, partly because people are not perfect, but also because running a country with over 300 million people is horrifically complicated and must, by necessity, involve numerous trade-offs.

But the idea of the Constitution is that we have a system, and if everyone follows the system then at least there are checks and balances, there is a system for correction of error, people have a way to make their will felt, and the whole thing grinds messily on...
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Tuesday, July 2, 2019

Jason in the news

No, not THAT Jason.

This one (via Science Magazine).

 
Jason—a secretive group of Cold War science advisers—is fighting to survive in the 21st century
By Ann FinkbeinerJun. 27, 2019


After 59 years of service, Jason, the famed science advisory group, was being fired, and it didn't know why. On 29 March, the exclusive and shadowy group of some 65 scientists received a letter from the Department of Defense (DOD) saying it had just over a month to pack up its files and wind down its affairs. "It was a total shock," said Ellen Williams, Jason's vice chair and a physicist at the University of Maryland in College Park. "I had no idea what the heck was going on."

The letter terminated Jason's contract with DOD's Office of the Under Secretary of Defense for Research and Engineering (USDR&E) in Arlington, Virginia, which was Jason's contractual home—the conduit through which it was paid for all of its government work. So, in effect, the letter killed off all of Jason's work for defense and nondefense agencies alike…

I posted about that Jason nearly five years ago, in the context of EHR "interoperability."

From the current Science Magazine article:
Expanding horizons
In the past 5 years, the range of studies Jason has done for nondefense agencies has broadened. HHS, for instance, has sponsored Jason only since 2013. The first of its three studies for the agency proposed an information systems architecture that would allow electronic health records to be operable across all health systems. In response, HHS formed a Jason Task Force that helped implement the report's recommendations through something called the Argonaut Project. "The health community has a unique sense of humor," says Teresa Zayas-Cabán, chief scientist at the Office of the National Coordinator for Health Information Technology at HHS in Washington, D.C.

The next HHS studies, in 2014 and 2017, were broader. One was about how data not in electronic health records—environmental data, data from health apps and fitness devices, social media data—could be used to improve personal health without threatening privacy. The other, Keller says, studied how to apply artificial intelligence (AI) to health, given the problems of uneven data quality and opaque, irreproducible AI models. Zayas-Cabán says one reason she likes Jason is the group's independence. The field of health care has "many powerful and entrenched interests," she says, "so independent and expert study of our issues can be extremely valuable."...

Yeah.Interesting article, fairly long read. Apparently not paywalled.

Not a lot of progress I can see on the interoperability front across the past five years. I'm not alone.
What Is Taking So Long For Meaningful Interoperability In Clinical Research?
By Alethea Wieland, founder and president, Clinical Research Strategies, LLC


Three decades ago when I entered the profession of clinical research, our workplace equipment extended to typewriters, white-out, mimeographs, hand-written documents, rubber erasers, pens, label makers, and fax and copy machines. Rows of massive, locked, fire-proof filing cabinets storing millions of papers for a nationally funded research program lined record rooms, hallways, and every spare corner of the offices. Most of us felt rewarded when we could use a typewriter with a correction key despite one’s typing skills being firmly judged by the illegible mistakes in the carbon copies.


Fast-forward to the present day, when countless digital technological advances, data warehouses, and hardware and software programs have made our jobs more repeatable, less erroneous, and faster. Yet, we still have not made significant progress on interoperability between disparate electronic systems such as routine, seamless, and secure data transfers from electronic health records (EHRs) to electronic data capture (EDC) systems…

 
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More to come...

Monday, July 1, 2019

In Memoriam, July 1st 1998

Twenty one years ago my first-born succumbed to her long, arduous cancer illness in Los Angeles.


Last year we also lost her younger sister Danielle to a different, unrelated malignancy. Words to continue to largely fail me.
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