Thursday, April 22, 2021

Disinformation: a Medical Meditation. Dander At Half Mast.


Are there no foes for me to face?

Must I not stem the flood?

Verse 3, Isaac Watts (1674-1748),
"Am I Not a Soldier of the Cross?"

Introduction

In what follows I expand on our ongoing series—most recently appearing here—on the crisis of fair and accurate information in science and medicine. I divide this meditation into four sections—"meditation" used to excuse a certain amount of meandering, hoping readers will bear with me. I enumerate these sections in order for those with less interest or time to pick and choose.

  • What's logical and what's illogical: the disciplinary messiness of disinformation, what else impacts the acceptance of disinformation?
  • What's the broad media problem, old and new?
  • Was there any responsibility on the part of elites, institutions and academics in bringing about the mistrust that now, ironically, lingers about them like a bad smell? And how did the elites treat their own innovators?
  • Within health care, what are the more narrow, "hidden" sources of disinformation and information asymmetry among actors, including patients?

For all of us, disinformation means information degradation around our health, both that of our populations (vaccination→autism) and that of individuals (nostrums→cure). Disinformation means intimidation of experts and the deprecation of expert knowledge. It means free communication in the arteries of our society suffers from a kind of thrombosis, as true believers latch onto all the niduses of nonsense that disinformationists increasingly spew, often with disastrous results.

A. Beyond Logic.

looking across so many different domains and disciplines, it's remarkable to see how much has been written about disinformation. It's all the more strange we've really only just scratched the surface, leaving us incredulous when Kennedys and Trumps alike smear it around. Enter the concept of disinformation as a search term in any engine. Or put it into an academic search engine. What comes back is a tsunami of attempts to wrestle with this phenomenon, crossing many disciplines.

So for this writer it's daunting to stare at a blank page and consider what more to say. At the beginning of this year, HCR's series editor, Dr. Poses, wrote a lucid piece on logical sources of disinformation. But the very vastness of the expanse of work on the subject, epistemologically, methodologically, its sprawling and protean nature, its slipperiness, may actually give us a clue to why disinformation seems so hard to pin down. (At the risk of being slightly off-kilter I'll treat it here as interchangeable with misinformation.*)

Yet as we enter this post-covid age of proliferating echo-chambers, with all this blather that seems meaningless to some yet somehow persuasive to others, ponder it we must. Political science, philosophy, computer and data science, sociology, cognitive psychology, social psychology, communications, legal studies, clinical medicine and more all help us focus on what disinformation might be, and what we might do about it. 

For starters, the philosophical science of logic is a good place to begin. Pretty quickly, however, dip into sources on "logical fallacies of reasoning" in science and medicine, such as this one, and an even cursory glance implicitly warns you: go further. Look beyond logic. "White skin causes inferior brain capacity" or "vaccine causes thrombosis" are classic examples of the post hoc propter hoc fallacy, the exposition of which goes all the way back to the Hippocratic Corpus in Greek antiquity. Logic! Illogic! Every freshman medical student comes across this in introductory medical decision making. But peruse the laundry-list of fallacies to which the human mind is inexorably drawn. Even in the "logic" laundry lists, you quickly see that many, if not most fallacies simply don't have a logical basis at all: they depend on a whole mug's gallery of social and psychological tendencies, misconceptions, and biases.

If lying is weaponized, then a major part of the problem must be how the human brain elaborates patterns of behavior to deal with real or perceived adversaries, to gain the upper hand in social conflict.  Far more than it is logical, such adversarialism is emotive and primitive-brain. Gaslighting for example has no real logical component. Indeed, its very illogic is part of its eerie power. So is the brain's poor track record when it comes to assessing risk. NY Times editor Jenée Desmond-Harris quotes these statements from her social media feeds:**

You say you won’t get the vaccine because you don’t know what’s in it but you'll eat a hot dog!

You think the government is using the vaccine to put a tracking device in your arm, but have you looked at your life and asked whether there’s anything worth tracking?

You’re afraid the vaccine might kill you, but guess what we know can kill you? Covid!

 What sets all of these apart is the illogic of risk assessment. We're hard-wired not to be logical. We're tuned in mainly to other things: fight versus flight; the over-privileging of gurus' opinions; big-name pretty-faces, sports stars and entertainment figures. We're also tuned in, as we've come to learn recently, to the pronouncements of blow-hard reality-show idols skilled at fanning the flames of illogic in our reptilian brains. These flames include fear of the Other, tribal shibboleths, the pursuit and possession of secret knowledge (e.g. QAnon); or pride in in-group belonging (Proud Boys, Boogaloo Bois, Three Percenters, many others).

There's another supra-logical bias that's less emotional but certainly not steeped in pure logic: historical. I speak to Black friends who explain vaccine hesitancy using the "remember Tuskegee" trope. Understandable, completely. But history doesn't repeat, it just rhymes, we've all heard it by now. And not just post-Tuskegee (or post-HeLa) suspicion of Big Science, but concern among many groups that the deck may be stacked in some way so let's just wait and see who springs for this newest-ride-in-the-park. Logical, but in a different way, really, coming from a different part of the brain: the social brain, exposing, let's say, its own different sort of logic. (On the Black experience see the excellent column, author What Doesn't Kill You Makes You Blacker.) For this author, Damon Young, the upshot is "weigh it all out, then decide." Of course.

If, say, you want to advocate for herd immunity, addressing historical bias requires some rudimentary knowledge of historical narratives and social circumstance. Then one might begin fully to understand their power as determinants of behavior. Historical, social and emotional foundations swirl powerfully around and beyond what's rational, and end up dictating behavior. They all impact the degree of presence or absence of that most basic commodity, trust. Trust is something that's in dangerously short supply in a fragmented society that never really was e pluribus unum. The importance of coherence, of a social compact, was something our teachers peddled in schools who had their own institutional interests in perpetuating certain myths.†


B. External Forces I. Media and Technology: the Disinformationist's Nidus of Nonsense 

1. Old Media.

I know it's nothing new for me to say this, but just because we have more forms of media proliferating, or more technologies to give us all the new flavors of megaphone, why would we expect the resulting information to be better? To quote Uncle Joe, come on, Jack! Not better information. Just a widening cornucopia. Just a louder, covid-spiked, Harley roar of intrusive noise.

Yet there are many who think they benefit. Actually, the media barons and tech bros clearly do benefit. Right in the wallet. It's absolutely beneficial for those acting as intermediaries for health (actually, all) information to put out there what's discomfiting, alarming, or otherwise stimulating in those places that dopamine seems to work its magic. What's perhaps less well recognized is just how calculating this is, even as some members of the "Great PR Families" (Sacklers, moreMurdochs, more) begin to show just an inkling of a superego long after the patresfamilias have done most of their damage.

Examples? Here are a couple. Start with those that preceded the current almost post-apocalyptic Fury Road of tech blogs and secret covens and digital echo chambers. One of the intriguing things about the early, print-only media moguls—or mogul wannabes—was how they seemed all to style themselves as Renaissance Men. The opiate kings, the Sacklers, spent lavishly on art and plastered their names everywhere—a common enough trait for the filthy-rich.‡

In any case, for those new to Health Care Renewal, the disastrous disinformation peddled by this media-savvy family revolved almost exclusively around a single trope that was pumped out through many subsidiary channels. Such channels includes speaking engagements by "pain specialists" at lavish detail-man sponsored dinners, touting the safety of these drugs that had made them multi-billionaires. Interestingly, the family got into trouble just a little too early—at least I think this is true, please write a comment below if you know otherwise—to benefit fully from the digital-channel revolution.

In 2014 a more recent example of the use of Old Media to flatter physicians into robot-prescribers was described in detail by physician-historians Scott Podolsky and Jeremy Greene, now respectively at Harvard and Johns Hopkins. They compare two media-savvy physicians from the 1950s, '60s, and '70s, the zenith of the print era in medicine and of post-war medical triumphalism. They contrast two roughly contemporary physician leaders, internist William Bean (1909-1989), a midwestern leader who tended to published in posh AMA journals, and immigrant psychiatrist Félix Martí-Ibañez (1911-1972) who tended to self-publish in his own Sackler-style "throw-aways" such as MD and his popular book Centaur. Both built careers out of flattering their medical brethren.

Yet "high road" Bean became notorious for his vicious assault on "low road" Martí-Ibañez for the latter's exercise of "a decline in taste, the faults of bombast, and flatulent writing. … [The author’s scholarly colleagues] must have winced at the polycythemic and apoplectic style of this literary centaur." What was interesting, though, was the fact that both of these "medical humanists" were furiously sucking at the teat of Big Pharma. Big Pharma has always been, one infers, to medicine what the Koch Brothers are to the Republican Party. (Or, let's say, fat-cat donors to both political parties.) Drs. Podolsky and Green conclude that the real argument was over what we might call "intention to inform." That is, disinformation. They conclude that for some, e.g. Bean, it was a bridge too far—open, overt pandering—when Martí-Ibañez declared that the "'whole operation [of running Martí-Ibañez's media] is done so artistically by our spellbinders that the reader, without knowing exactly what has happened, falls gratefully under the magic spell and reads, enjoys and remembers everything stated in MD. As a consequence of this special mood in which he is placed by the magazine we can logically assume, and I am sure it could be proved, that the reader is more receptive to advertising messages because their power is considerably enhanced by the mere fact of their being within the covers of MD'  With this," the authors conclude, "the fault lines between the humanistic visions of Martí-Ibañez and Bean are clearly exposed."

To some extent, then, information, even in public health and the current pandemic, is now seen by many as simply an arm of marketing. As we've seen, such an approach has its powerful antecedents, going back to the post-war period and probably before. Since when did marketing people feel the need to be truthful? For them, the mission's never been about putting out some semblance of the audience's actual reality. Rather it's been about "controlling the narrative" in order to achieve market dominance in any given domain. The "crime" of Martí-Ibañez was that he pulled the curtain aside and admitted overtly what he was doing.

And, as a sort of coda to the old-media story, let's recall the immediate past flowing right now into 2021. The team put together by the White House the to combat our still-ominous viral epidemic ended up only "spinning" the epidemic to benefit the Orange Man in the Oval Office. Hence the truly chilling story—a non-digital story—of the White House's efforts to muzzle the CDC and bowdlerize its message. How did that work out for the people of the United States? More on that in a minute.

2. New Media. To Each Person Their Own Megaphone

New media clearly has the edge when it comes to creating megaphones and echo chambers. This digital world of tiny communities and hermetically-sealed "pages" can and does spawn much larger cohorts of belief. It's all fractionated and atomized. Each person to their own echo chamber. A new report—thanks here to Anne Peticolas for this reference—on The Disinformation Dozen shows how new media have all but cornered the market, literally, on antivaccinationism. The entire antivax movement is dominated by a dirty dozen writers' names, individuals who've almost cornered the market. Two-thirds to three-quarters of all content originates with these twelve nattering nabobs of negativism. That's enough for herd immunity! In the era of Old Media—so much for Internet democratic leveling—it's hard to imagine even a Random House, Simon & Schuster or National Bible cornering the market for cult belief.

In a subsequent writing I'll address some of possible ways to combat this meretricious lack of information balance. In the meantime, one way to confronting it with awareness, at least a start, is to make a point of lurking somewhere you don't like to be. For me, that's here. The digital on-ramp is so, so much more accessible than its print predecessors, especially for digital "content creators."

Actually, all these digital rabbit-holes provide an answer—the wrong one—to the question I posed above, "how did that White House manipulation of the Covid narrative work out?"  The question could've been taken as rhetorical.  For example, more specifically, "how did White House disinfo affect the CDC?" Yet here we have the author of the entirely suspect Health Impact News complaining that the "medical tyrants now [2020] had Big Tech behind them, and it was time to make their main move: Seek to vaccinate every person on the planet using the fear of a 'pandemic' to accomplish their plans." For them, such manipulation was clearly a good thing, and everybody got to define for themselves what was signal and what was noise. If vaccination were just noise, then countering the "medical tyrants" was surely God's Work.

There are so many more new media like this, splintering off, every-man-his-own-megaphone, each decrying the conspiracies of  mainstream media, each purveying their own truth. If every man his own-megaphone, ergo every man his own truth. At which point, there is no truth, just truthiness, right? Um, not right. These new media mavens are the folks for whom, unlike the old-media Sacklers and Murdochs in their day, the benefit is harder to divine. Maybe, given the frictionless access to all these new media—WhatsApp? Slack me! No, SMS! No, Instagram!—it's enough to be a mini-mogul with your shiny new mini-megaphone. If you don't get rich, at least you'll be be famous, adorned in previously unimaginable numbers of followers.

And there's always the hope of becoming a Sackler, or even a Zuckerberg.§

[Note: six days after this blog posting was uploaded, the redoubtable Peter Hotez came out with a similar plea for stronger counter-measures in a well reasoned Nature piece. Entitled "COVID vaccines: time to confront anti-vax aggression," he avers "Halting the spread of the coronavirus will require a high-level counteroffensive against new destructive forces." Amen.]

Mostly, though, the digital infomeneurs, or infomanures, are going to have to settle for some lesser bit of notoriety and their perceived access to the special joys of secret knowledge. Mostly, they're followers masquerading as leaders. Followership itself, where there's a putative "leader" such as "Q" of QAnon, is incredibly strong, as we learn repeatedly from the burgeoning literature on cults, from Jim Jones to Scientology to antivax. Indeed, if we plunge into any of these rabbit-holes, sometimes it's hard to tell the leaders from the followers.

Oh, and here's the Oz-like, surreal part of that last assertion: followers versus leaders. Look at QAnon. Who is its mysterious "Q"? A recent bit of sleuthing, if what it purports to reveal can be confirmed, is instructive. In a new television documentary for HBO, it seems the medium really can be the message. All that secret knowledge about the Man in the High Castle, 'Q,' may well emanate from the guy who built the megaphone, Ron Watkins. Watkins is the guy behind the curtain, administrator of 8kun, a favorite online base for conspiracism. Seems there's one born every minute in the Land of the Paranoid. Watkins is the latest in a long line of salesmen. For every Jonestown there is a Jones, or, in Oz, "not a bad man just a bad wizard." Or, let's say, a bad man and bad wizard.

Next, during the post-pandemic transition, moving from BC (before covid) to AD (after disinfo), everyone's head will swivel in a permanent driving info-torrent. Billowing spam, social media rooms'n'zooms, spoofed identities, random come-ons for new health insurance. (And let's not forget your expired automobile warranty.) There's a weird and enervating synergy between the disinformation bubbling up out of those flickering screens and the cramped ennui seeping out of public health restraint. Little wonder then that such synergy, in the spring of 2021, draws antisocial behavior—Fury Road! Mass Murder du Jour!— from people we squint to encounter, and shrink back, as we venture out into the daylight.

The article goes on, “'[w]e really shouldn’t be all marching in lockstep like lemmings to go and do what the government tells us to do,' said [Chris Christie], positioning himself as a political outsider. 'They’ve [the experts?] screwed up too many times for us to do that. But I really do believe the facts that I’ve learned, and the experiences I’ve had, should make at least everybody … think hard' about getting a vaccination." Note the faux outsiderism in which politicians takes great pains to distance himself from those uppity experts, and gives only a qualified recommendation lest he be identified to closely with those Others.

There's nothing terribly new about this disinfo-fueled attitude. An aw-shucks, populist-tinged suspicion of government and of elites actually works. It produces effects that benefit the issuer. It pretty much deep-sixed Barack Obama but may save Joe Biden. It's actually nothing new in the least, having long ago been described by Richard Hofstadter in his 1963 landmark Anti-Intellectualism in American Life. But it has taken on a new cast in the twenty-first century, receiving impetus both from new technologies (every man his own platform) and Ronald Reagan's now-canonical 1980 inaugural dictum, "government is not the solution to our problem, government is the problem."

Reaganism was a major source of energy for the wave on which Donald Trump is just the more recent surfer. Just a little over a decade earlier, the Kennedy-Johnson years had come blasting to a close with shots heard around the world, political and scientific. Of course this doctrine's culmination came in the more debased form we saw, and sadly continue to see, in Trumpism.

You can fill in the blanks from here on out. What ensued? Disinformation. And it just keeps on coming. But maybe, just maybe, we could be coming to the end of a forty-year cycle of science- and government-bashing.

But here I'm offering here a meditation not on historical cycles, but on disinformation. It's not just Trumpism's right wing shock jocks and wrestling enthusiasts who're to blame. So we must turn next to some exploration of how, across multiple disciplines over these same forty or so years, academic elites may have contributed, to a national mistrust of science and medicine.


C. External Forces II. Academia and the Chattering Classes

At some point between Hofstadter's 1963 publication and Reagan's 1980 inauguration, in almost every discipline of social sciences and humanities and on both sides of the Atlantic, the academy began a radical shift. Academic thinkers, especially those who were the Oedipal young pupils of the postwar generation such as Hofstadter, turned against his approach to a positive narrative of what many thought of  as a postwar liberal consensus. They reasoned, not without justification, that that consensus had perpetuated a new war in Asia along with economic disparity, racial injustice and colonial domination. Arguably one upside of this revolt against the post-World War II regime was the partial melioration of some of these ills. But there was an equally clear downside. It had to do with the value of science, medicine, "progress" and the pursuit of "truth."

Heretofore, in approaching the way the public might view science and the quest for truth, Americans relied on narratives of progress. This so-called triumphalist view stemmed from a positive philosophy that emphasized both the reality of a goal and men's ability to home in on that goal through a combination of empirical practice and theoretical refinement. A new wrinkle was added in 1962 when Thomas S. Kuhn, a physicist with an interest in the history of science, injected a sort of Darwinian, punctuated idea of what he called paradigm shifts. In such shifts, Kuhn portrayed positive science lurching in new directions through generational and disciplinary change, leading to new communities of practice. For philosophers of science, he folded into the mix some important notions of social participation and discontinuity.

What Kuhn may or may not have anticipated was the fact that another, more radical and more nihilistic epistemology was about to supersede his own notion of how and why scientists change their world views. In some ways it was almost an anti-epistemology, because it was consonant if not causative in relation to the outcome we've been talking about: "every man his own truth." In another irony, the shift in many disciplines' outlook on "truth" was itself a sort of paradigm shift, both disciplinary and generational, away from a western-centric emphasis on elites and Heroic Dead White Men, and toward a rather insular and jargon-laden sociological analysis.

In a number of ways this was, in fact, a salubrious shift. It had a de-centering and iconoclastic effect. But as some of its own practitioners (vide infra, discussion of Bruno Latour) would come to point out, it went too far. Apart from loosing the grip of expertise on policy making—populists' insistence that we don't have to listen to those pointy-headed guys—more focally it loosened and deprecated scientific and medical institutions' valuation of the social sciences and the humanities. Around the United States, one by one, medical school departments examining the history of medicine and health care either ceased to exist or morphed into "medical humanities." Too often this last could be roughly translated into "Ethics Lite."

Only now, with the pandemic, are we seeing new pleas for, you guessed it, the reincorporation of such a "long view" back into medical education. We can expect to see more pronouncements such as Molly Worthen's recent analysis proclaiming that "A Once-in-a-Century Crisis Can Help Educate Doctors," urging an improvement on what has by now shrunk to "off the beaten track [discussions and courses] engaging a small, self-selecting group of students." A revived version of this study of the long view would goes well beyond the old paradigms, neither overly triumphalist nor overly cynical. It would emphasize topics as patients' own narratives, science as it is really practiced (see below), and far more complex stories of earlier epidemics. (Yale's new Covid-19 study group garnered 65 students: not bad.)

Long before Covid-19, mid-20th century scientific triumphalism had come crashing down with the notion of American virtue. A multicentric approach labeled variously as post-modernism, structuralism, deconstruction, post-structuralism, or "the Strong Programme," this new narrative dethroned the idea of progress as a peculiarly slippery and pernicious western instrument of domination. Replacing the idea of progress was a focus on scientists' and physicians' actual, often baser motives in conducting science. The new narrative revolved around social control and career ambition. From the French school came particular critiques of psychiatry and prisons. From the Scottish school came critiques of science and scientific communities, such as that exposed in Barry Barnes's and Steven Shapin's 1977 manifesto on Britain's Mechanics Institute.

Our purpose in this paper is to show how the founders of British Mechanics' Institutes thought a scientific education would aid in the social control of those artisans who were their designated target. We intend to elicit from the public statements of the movement's leaders the basis and structure of their own belief that a regimen of scientific education for certain members of the working class would render them, and their class as a whole, more docile, less troublesome, and more accepting of the emerging structure of industrial society.

An analogous and contemporaneous argument was made for medical care by Leicester sociologist Nicholas Jewson in his 1976 article on "the disappearance of the sick man." In this still oft-cited article, Jewson posited the inevitability of a loss of human and social relations by 19th century patients as the result of incursions into medical—especially hospital—care by technology and bureaucracy. And at the same time, medical science was suspect as new GMBs—Great Man Biographies, except delete the 'G,' these were anti-GMBs—tried to show not the actors' genius but, rather, their feet of clay. The net result of dethroning life sciences, exact sciences, and medical care was, within academia, a decline in interest in the narrative of progress, suspicion around clinical research, and at least possibly a decline, though I don't think anyone's ever quantified it, in actual boots on the ground to study these topics.

Interestingly, whatever the influence or lack thereof between post-modernism in academia and general population (or politicians') attitudes toward science and truth—and vaccines—it seems pretty clear that current events in the 2020s are clearly starting to reverse both trends. And this reappraisal, accompanied by a striving toward a more nuanced and realistic view of science and medicine, actually started before Covid-19 and the idolatrization of the appropriately scrappy truth-teller Anthony Fauci. In 2009 the whole Jewson "sick-man" concept, after it was invaginated by a whole generation of college students, was reassessed in an important critique. Some years later but still before the pandemic, the toppling of Louis Pasteur's statue, discussed below, was also upended.

What's wrong with bringing scientists and physicians down a notch? We do it all the time in this blog! The answer is tricky. Maybe nothing's wrong with it. (Maybe it doesn't even make a difference, so have at it!)  But for a generation, the leveling of the idea of progress was prevalent and could well have had some negative effects. The truth is that neither narrative was adequate to the task. Not "N1," the narrative of man inexorably pursuing inexorable progress across the ages. And not "N2," the narrative of science as social control and truth as hopelessly elusive, . A new narrative was called for and is just starting, with some assist from a virus and the people who study it, to emerge.

One wishes that someone I once briefly but enjoyably worked for, Anthony Fauci, the sharp-elbowed former basketball guard and gruff opponent of Capitol Hill swells, were here in a video. He'd pipe up and say, in that gravelly Brooklyn-inflected voice: "sure, we screw up, and there's plenty of career science-and-medicine types—go look at the White House in 2019-2020—puffing up their careers at the expense of the rest of us. But we're trying to get closer and closer to the reality here. We need to cut down on all those people dying out there. With a little help, we can do that."

Oh, wait, Fauci is here (here), sort of, in a video!

To see how medicine really works, pace all the earlier philosophers and sociologists of science, let's look at how the changes I've been describing rather abstractly were actually embodied in two key figures. Neither is American so US readers may not be familiar. Both are illustrative of important changes that actually calm my dander and give me cause for some optimism.

The first, Bruno Latour (b. 1947) is a Paris-based author with global reach. His Wikipedia page calls him, as befits the polymathic member of a celebrated French viticultural family, a "philosopher, sociologist and anthropologist." My Neeva search results page arrays his photograph alongside those of the much-older figures Thomas Kuhn and Michel Foucault, both born 1922. N1 and N2, side by side. I doubt that Latour, unlike some of his UK compadres of the iconoclastic "strong programme" ilk, ever really needed to work. But in his early years, based eccentrically at the School of Mines in Paris, work he did, profligately, publishing yet another heretical work on Pasteur and then a slew of subsequent books and articles including the important and still-available 1986 Laboratory Life. (This last was co-authored by UK sociologist Steve Woolgar and in the current edition introduced by none other than Jonas Salk.) That later book's subtitle was telling, reflecting Latour's own early program: "the deconstruction of scientific facts."

In recent years, however, Latour, much of whose current output seems to be positioned in the province of literature for the management community, seems to recant. And this is the interesting part. In the 20th century I met Latour, an astute, personable, and sensitive individual. I was fascinated when, in 2004, in Critical Inquiry—a journal not well known to science-and-medicine types—he published a piece called "Why Has Critique Run out of Steam?" In it he first posed a question that, by the turn of the century, must have bubbled up in many academic minds,

My question is simple: Should we be at war, too, we, the scholars, the intellectuals? Is it really our duty to add fresh ruins to fields of ruins? Is it really the task of the humanities to add deconstruction to destruction? More iconoclasm to iconoclasm? What has become of the critical spirit? Has it run out of steam?"

Latour has become less interested in science-as-crap and more in the effect of computers—and the effect of academia on the body politic. So at the end he answers his own question, cryptically but still tellingly, in this way:

[We wish to be] generating more ideas than we have received, inheriting from a prestigious critical tradition but not letting it die away, or “dropping into quiescence” like a piano no longer struck. This would require that all entities, including computers, cease to be objects defined simply by their inputs and outputs and become again things, mediating, assembling, gathering many more folds than the “united four.” If this were possible then we could let the critics come ever closer to the matters of concern we cherish, and then at last we could tell them: “Yes, please, touch them, explain them, deploy them.” Then we would have gone for good beyond iconoclasm."

As the pandemic finally started to rage and much of the world was in lockdown a decade and a half later—early summer 2020—Latour was interviewed by The Guardian. He was asked to meditate on three of that newspaper's cardinal concerns that haunted the new century's tumultuous third decade. Climate, coronavirus, and post-truth: call them the three horsemen, or "the revenge of the real." Here, in extenso, are his final two responses to queries put by the newspaper's interviewer.

Your work has often challenged the objective, God’s-eye view of science. You argue convincingly that humanity cannot be so detached. But the political right have twisted this approach to undermine all expert knowledge on the climate and nature crises. Any regrets?
A critique of how science is produced is very different from the post-truth argument that there are alternative truths that you can choose from. Post-truth is a defensive posture. If you have to defend yourself against climate change, economic change, coronavirus change, then you grab at any alternative. If those alternatives are fed to you by thousands of fake news farms in Siberia, they are hard to resist, especially if they look vaguely empirical. If you have enough of them and they are contradictory enough, they allow you to stick to your old beliefs. But this should not be confused with rational scepticism.

Has the Covid-19 crisis affected our belief in science?
The virus has revealed the number of things you need to know to decide what is factual and what’s not. The public are learning a great deal about the difficulty of statistics, about experiment, about epidemiology. In everyday life, people are talking about degrees of confidence and margin of error. I think that’s good. If you want people to have some grasp of science, you must show how it is produced.

Couldn't have said it better myself. Latour was, and is, the consummate observer of science and medicine. His writing has gradually evolved to a point where he can no longer be called either a triumphalist or an iconoclast. He seems to be suggesting a new, middle way, in which science and truth are always provisional, but if pursued within existing guardrails ought to be trusted. In lay terms we could call it the law of 20-20-hindsight-but-it's-the-best-we-got. To test this hypothesis we can next exam the career of another European scientific leader, this time an practicing scientist rather than a philosopher. Like Latour she has strong ties to the US but emerges from the European tradition.

In the mid-1908s, far removed from the issues of how either societies or their elites look upon truth, a Hungarian biochemist named Katalin Karikó (b. 1955), two year old daughter in tow, accepted an invitation to join the staff of Philadelphia's Temple University. With this choice she strove to pursue her research on the transcription of messenger RNA. At that point mRNA, yoked to very new technologies, promised much. But it did not yield results fast enough for US medical schools. Ten years later she transferred (1989) to the University of Pennsylvania's neurosurgery department. By 1995 she'd been demoted and removed from that department's faculty track. Not enough of her grant proposals had achieved funding. (My report here is assembled from many fine accounts of her work, two mentioned below, most of them based on interviews. All are available upon a simple name search. The NY Times also reported part of this story after the present blog was written. Best among them are from The Guardian and, especiallyThe Harvard Crimson.)

Karikó's work continued at Penn only because of certain contingent factors: first and foremost, she believed in the power of mRNA as an eventual therapeutic and soon thereafter vaccinology tool; second, she was tenacious and willing to accept a lesser post in order to pursue the work even after it repeatedly failed to yield the paramount coin of the realm, NIH largesse; and, third, a conviction about the  mRNA technology shared with her clinical colleague Drew Weissman. And, yes, fourth—maybe most significantly—she wanted to hang on to the tuition reimbursement benefits that allowed her daughter Susan, a promising athlete and rower, to attend college at Penn. 

It took another ten years, down into the middle of the first decade of the present century, for Karikó's mRNA work to come to fruition. She landed on her feet through the creation of Germany's BioNTech where she became a partner in 2013. The company now collaborates with Pfizer to produce and deliver the phenomenally effective mRNA Covid-19 vaccine. Thus, two small pharmaceutical houses, one led by European scientists (including two Muslim Turks) barely known until last year in the US, the other Moderna, a uniquely American success story with a Black female lead scientist, both came to the rescue.

Pause to consider how these stories might be written. Are being written. Much ink is being shed about the greed of Big Pharma. As if that were the whole story. There is another story. It is the story of the creation of mRNA vaccines. Blind luck, as some might have it? There is another story.

In 2008, three years after Karikó's breakthrough discovery of how mRNA might effectively be slipped into cells to crank up its protein synthesis machinery, her daughter Susan Francia (photo) went to Beijing and won Olympic gold in rowing. Four years later, in 2012, the year before Karikó left Penn's employ to join BioNTech, Francia pulled it off again, winning her second gold in London. Motivation, just maybe, enough. Meanwhile Karikó and her colleague Weissman are packed for Stockholm. But their intellectual property remains at Penn, which repaid her in 2013 by refusing to reinstate her to tenure-track status.

But of course now, as recognized Queen of mRNA and money-pump for Penn, in an appropriate but rather empty gesture Karikó is still pictured on the university's website as an adjunct. In a 2020 interview, she reflected that "I thought of going somewhere else, or doing something else. I also thought maybe I'm not good enough, not smart enough. I tried to imagine: everything is here, and I just have to do better experiments." And so she did.

Was it all a random walk? In no way does the mRNA vaccine story resonate with either of the traditional narratives of how science is "supposed" to work: 20th century triumphalism versus a leveling and often cynical postmodernism. Failure to explain or understand science has thrown the popular narrative, especially in our post-covid dawn, to the disinformationist wolves. Academic authors are just beginning to catch up by asserting more nuanced narratives of how science works, and hence why we should at least provisionally trust the Karikós and Faucis of the world.

To conclude these micro-biographies, I should add that the choice to spend substantial time on Latour and Karikó has a lot do with how each in their own way illustrates the problem of trust. Who can find a trustworthy overarching truth narrative in science? Especially once you actually personify it, take it down to the level of the individual life lived. In some ways we've outlived the usefulness of heroes. But, maybe, in some ways, not so much. Another recent biography to instruct us is a recent account by Johns Hopkins historian Daniel Todes of Ivan Pavlov's life lived. This work also conveys the same nuanced understanding.

In an interview Todes veered close to Latour, evidenced in this quote from his own university's magazine, describing himself as "... basically a realist. I believe that there's an objec­tive reality independent of our consciousness. I don't think science is just a matter of opinion. But it's a deeply human endeavor, and reality being infinite, there's an infinite number of ways into it. Metaphors define paths into this reality—the questions that are asked and aren't asked." Thus we're left with narratives of the search for truth in science and medicine that at some level are compatible with all of the flavors of meta-narrative, from Kuhn to the very latest attempt. That, to wit, is The Knowledge Machine, a promising new (2020) version of the narrative of science from NYU professor Michael Strevens. I hope to discuss it here soon.

One final irony seems worth pointing out before we move on. The academic critique of science and medicine was far from eroded by the forces of the right. The notion of "alternative truth" has in fact been embraced by the right. The year 2017 was a banner year for those open arms. Orwell had sort of predicted it in his "newspeak," but in 2017, after 45 was inaugurated, Donald Trump's senior advisor told Chuck Todd that the president's press secretary was merely disseminating a different flavor of truth: "alternative facts."

And speaking of irony: while the right embraced the possibility of "alternative fact," it was ultimately the left that found every-man-his-own-truth wholly discomfiting. Yet the "truth" as portrayed by the left, like Henry Ford's choice of Model T colors, could also prove pretty confining.


D. From the Ridiculous to the Sublime: The Provider and The Patient

In this final, shorter section I'd like to pull the focus back and away from the shambolic bloviators sprinkled across our political and intellectual elites. For elites of all persuasions, it seems the Covid-19 pandemic has been a pivotal time for public engagement: seeking either to emit or to combat disinformation. Pull the focus to a level more sublime, that of individual relationships between clinical actors. What's happening between physicians and patients as they migrate from face to face encounters to telemedicine? What's happening between physicians and patients as face to face encounters shrink down to fifteen minutes?  What happens when much of that fifteen minutes is deflected, for the physicians, from high-touch and hands-on to the creation of the perfect electronic note? What happens when that document creation is conducted with eyes deflected away from the patient and toward the flickering screen? How does trust between the two parties fare with these changes when they are coextensive with the outside rise of social media?

I found instructive hints in a recent piece in Media and Communication, an open-access journal of applied research in communications and media technology. In this article a team from Madrid and Bournemouth make the point that patients looking for a plan to understand their illness—e.g., some illness mimicking coronavirus—will more than likely be let down and leave the office confused. He or she will leave carrying a thick sheaf of papers purporting to convey the "after visit review," aka the AVR or "Clinical Summary." In the majority of instances, nowhere in that thick pile of papers, a cumbersome list-of-lists, lurks any real plan. Hence the AVR lacks any information even while "it takes only a few clicks to find a reputable health advice source to refute [disinformation]" that may include "virus spreading through mobile phone networks" or "radiation from such networks suppresses the immune system against the virus." It's not a fair fight. Lacking information they can actually use, the patient joins "many people [who] break lockdown rules [and] pour onto the street to smash ... phone masts in many countries."

[Note added post-publication, with thanks to fellow HCR blogger Anne Peticolas: A quite similar view was just expressed by the blogger and Down Mainer country doctor Hans Duvefelt. In his plaint, "Some People Don't Think Like Doctors," he notes that "in a patient’s medical record, we have a fundamental need to know in what order things happened. ... But [omitting] that seems to be how people with a bookkeeping mindset prefer to view the world." And indeed, the genesis of the electronic health record, and what sustains it to a significant degree, originate in hospital back offices. That's where managers—it's the CFO who finds the exorbitant scratch needed to pay for an EHR—have always counted the beans. And now, with the EHR, as Dr. Dorio's recent HCR piece amply demonstrates, that's where they can dictate their own chosen surrogate markers of "productivity."]

I suspect, however, that most patients and more than a few health care providers don't know is that new rules governing all such matters are now just around the corner for information sharing. As a result of the 21st Century Cures Act, starting this spring, access to their own electronic health records must now be given to patients. A decade or so ago, in anticipation of such information-sharing requirements, a new movement sprouted. However improbable it might have seemed at the time, the Patient Portal suddenly sprouted from small start-up companies. Soon they were being acquired by the large, "big iron" EHR companies, unless in some cases those folks decided to roll their own portal platforms. Either way, and with a few recent exceptions such as cross-institutional sharing, document uploads, limited messaging and future appointment requests, such portals continued to offer the same limited usefulness as the Clinical Summary.

The AVR was that big wad of paper handed to the patient as he or she left the office. The portal was more like a keyhole through which the patient could peer at their own living document, containing, however, often misdescribed, medication and other lists. Evolving as an afterthought, the AVR was—and still is—most useful for wrapping fish. Hiding in plain sight within it was a big, black hole at its center. What should have filled that hole was supposedly some description of the actual plan contemplated as the result of this particular visit. Not the incompletely reconciled meds list. Not the mostly-irrelevant list of earlier diagnoses of gouty toe and earwax. Not the irrelevant list of future routine follow-up appointments within a vast hospital-based system. In other words, not the wholesale data-dump that could be parsed by the computer, deemed to be sufficiently discrete to fit this list of lists—but was in fact wholly useless for this visit.

Garbage in, garbage out.

Why such a remedial oversight? The actual plan for the patient, in case after case, was either too slippery or too time- and energy-comsumptive for the provider within that fifteen minute stretch. The default alternative was hence just to push out a document with that black hole in the middle. Such a meaningful plan would have had to be discursive, likely to contain at least a couple of if-then statements and, above all, tell the story. The story, how to plan going forward, is what the patient needs. Conversely, the story, with at least an implied plan (don't succumb to the vaccine-mongers) and look-forward with rationale (conspiracy!): this is what the patient gets from disinformationists.

The story is what the physician lacks time to craft properly for the patient at some appropriate point late in that fifteen-minute visit. The patient is left vulnerable, an opportunity missed. As a physician I blush to think that other professionals, including most lawyers, notwithstanding their oft-contorted and -ontrived ways of near-impenetrable prose, fully understand the need to tell the plan. But we don't. Why? Why have we abdicated compliance with this obvious need? Are we that pervasively controlled by our paymasters? And why have our paymasters abdicated asking us to provide it?

Oh, wait. Maybe it's simple. Measure what you can count, simple as that. "Meaningful Use" of the EHR has required that everything be measured—viz., the numbers of e-prescriptions, the numbers of usually-inaccurate problem lists, "medication reconciliation" that is anything but reconciled. But what's most meaningful is what just happens to be less easily mensurable. 

And besides, lawyers actually get paid to do this stuff. Explaining and planning stuff. Sometimes in legalese. But they do it.

Doctors don't. Ever. Or ... hardly ever.

It turns out, however, that there are actually ways to empower providers and patients with beneficent technology to counter this sad lack of information symmetry. (It's asymmetry, think about it, both within and without the exam room.) With the advent of the Patient Portal the health professions have already yielded to the lately-acknowledged need for greater openness. Further, some patients are already beginning to benefit from an even more radical beneficent information initiative. A lucky few are now blessed with full access to their electronic records, through the OpenNotes movement pioneered by Harvard's Thomas Delbanco.

One next step must thus be the enhancement of the AVR so that it becomes a truly useful tool. In a future essay, I'll outline strategies with which to fashion such an enhancement. If successful, such methods could finally, along with portals and OpenNotes, level the information playing field. 

Disinformation is thus a broad and scalable concept with sort of fractal features. It works at the level of the dyad of physician and patient. It scales to institutions, then to societies with all their tribal animosities, and then, ultimately, to problems of international cooperation. Disinformation is like a virus. It's pernicious in the way it insinuates itself into life's interstices. But counter-measures are out there. Marshalling such counter-measures requires, however, a concerted effort of of will. Most critically, countering disinformation requires sheer perseverance. It requires the grit of people like Katalin Karikó, if trust is to be restored and this brackish disinformation flood is finally to be stemmed.

___________________

*Misinformation is a term often used to explain bad outcomes such as that experienced when homeless persons are unable to get assets such as stimulus payments or vaccinations. Disinformation seems to connote, for some, more agency on the part of the one seeking to impart "information" that's not merely disrupted but purposely distorted.

**New York Times "Opinion Today," 9 April 2021.

†Of course we're not alone in this myth-making. The French have their own cherished myth of laïcité. Once upon a time the Germans had the myth of cultural purity. Useful myths are remarkably persistent. The problem is that their stewards all too often preserved the wrong myths. On the other hand, now abandoned by many as unfortunate myths are notions such as "truth," and "science," actually the very ones we need to revive. Then perhaps struggle to agree on the basic meanings of other notions such as "infrastructure," "speech" or "bipartisanship."

‡The HCR piece referenced in the preceding sentence, with its link to the rag (1960-?) started by Arthur Sackler (1913-1987, features a link to his Medical Tribune. That link seems now to be broken. Some discussion of the family's playing on the culturati role as compensatory for the hard-driving PR behavior is in the still-available WaPo obituary. The magazine, which reached 600,000 physicians, is still available in one or more archives. In the paragraphs immediately following, see also my discussion of other pharma-associated actors' use, in high and low places, of the media megaphone, with a link to the superb recent article on which much of it is based. Just as I complete the writing of the present meditation, a new biography of Arthur Sackler and his family, New Yorker writer Patrick Radden Keefe's Empire of Pain, hits the bookstores. I have not seen an advance copy but it is getting much notice in traditional media. This includes a forthcoming NY Times review that states "Arthur may have been the first to blur the lines between medicine and commerce, and he pioneered modern drug marketing, but his sins pale compared with those of the OxySacklers."

§It's worthwhile recalling that only Zuckerberg, of course, became a Zuckerberg

¶Typically, on the street, one hears this particular trope translated as "mistrust of all science and mistrust of Big Medicine—but not my own doctor." [My paraphrasis.] This in itself can be a problem, given the number of resurgent medical messiahs we've been seeing.


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