The NIH Ices a Research Project on “Health Communication”. Is It Self-Censorship?

Yves here. I suspect readers will react as badly to the framing this article and the underlying NIH initiative as I did. The NIH scuttled a project to study health communications on a broad basis. But the article strongly suggests that the reason for this initiative was to combat “misinformation” and conspiracy theories, as in get better at propaganda and narrative control.

The very top of the article takes the bogus position that “communicating what scientists know has been a long-standing challenge” and pretends that medicine is a science. For the most part, it remains a medieval art. And the Covid pandemic showed that public health has become hopelessly politicized, and business interests are more important than health outcomes. Let us start with a vax-only approach once vaccines were available, and falsehoods that if you got a vaccine, you would not get Covid, which was the basis for the next lie, that if you were vaccinated, you would not spread Covid. But that false notion was the justification for coercive vaccination mandates.

And we can go on long-form about the officialdom being a source of Covid misinformation, such as former CDC chief Rochelle Walensky demonizing masking by depicting users as wearing a scarlet letter, or as Lambert keeps having to document, the public health orthodoxy lying by omission by ignoring that Covid is transmitted by aerosols and therefore destructively failing to recommend better ventilation and masking as top-level defenses.

But these examples are only vivid examples of pious orthodoxies in medicine not being questioned. Doctors keep prescribing statins on a widespread basis when they are beneficial only to those with heart disease. My experience is physicians are also willing, even eager, to prescribe psychoactive medications for sub-clinical conditions like fatigue in an otherwise healthy-looking person. They seem unable to tell the patient that unless the problem comes from a short list of conditions like low thyroid or low testosterone, there”s not much they can do about it.

And don’t get me started on drug companies finding a way to misrepresent clinical trial data, resulting in the case of Vioxx alone nearly 40,000 deaths, or the opioid crisis, significantly brought to America by the Sacklers, or questionable orthopedic procedures? Or how about upcoding?

And as for the whiging-in-passing about stem cell therapies, the US is behind much of the rest of the world and highly restrictive too boot. That may be because even though these treatments are typically costly, they can displace some big ticket drugs and surgeries.

The big problem is that the US has a for-profit medicine system with all sort of built in bad incentives like paying doctors for procedures. The public is correct to question what they are told by medical professionals given that. But instead of recognizing that the problem is the fundamental deterioration of the practice of medicine, which has accelerated due to the corporatization of medicine, the NIH really appears to believe the problem is that patients won’t submit to the authority of an often-corrupt medical establishment.

By Darius Tahir, KFF Health News Correspondent, who previous worked for Politico, Modern Healthcare, and The Gray Sheet. Originally published at KFF Health News

Many Americans don’t understand a lot about their health. Whether due to people believing conspiracy theories or simply walking out of their doctor’s offices without a good idea of what was said, communicating what scientists know has been a long-standing challenge.

The problem has gotten particularly acute with a recent wave of misinformation. And when Francis Collins led the National Institutes of Health, the world’s premier medical research agency, he thought he had a solution: to study health communications broadly. “We basically have seen the accurate medical information overtaken, all too often, by the inaccurate conspiracies and false information on social media. It’s a whole other world out there,” he said in 2021 as part of a farewell media tour.

“I do think we need to understand better how — in the current climate — people make decisions,” he concluded.

But Collins’ hopes appear dashed. In a sudden reversal, the NIH’s acting director, Larry Tabak, has paused — some say killed — the planned initiative, Advancing Health Communication Science and Practice. Its advocates fear the agency has, for political reasons, censored itself — and the science that would’ve sprung out of this funding stream.

The agency has offered shifting and inconsistent explanations, sometimes outright contradicting itself in the space of days. Sources familiar with the project insist that whatever the agency’s official story, it has acted unusually, contrary to its normal procedures in deciding what science to fund.

The officials, both in and outside of NIH, believe the agency is acting in response to political pressures over misinformation and is effectively censoring itself. Efforts to study or push back on inaccurate information have become contentious. The Republican-controlled House of Representatives repeatedly has plunged into the issue by investigating social media firms and government agencies for their efforts to regulate online speech. They’ve even targeted academics who merely study information flows online. Meanwhile, in July, a federal court in Louisiana issued a decision on a long-simmering lawsuit brought by a group of Republican attorneys general and anti-vaccine groups to block government officials from communicating with social media companies, with certain exceptions for national security and criminal matters. That ruling has since been stayed.

Even though the NIH has had to navigate political rapids for decades, including enduring controversy over stem cell research and surveys on the sexual behavior of teens, this is a particularly fraught moment. “It is caught up in a larger debate about who gets to decide what is truthful information these days,” said Alta Charo, a professor emerita of law and bioethics at the University of Wisconsin-Madison who has advised the NIH in the past.

For researchers interested in the topic, however, it’s a major loss. The program was deemed potentially so important that it would be supported through the agency’s Common Fund: a designation for high-priority programs that cut across normal institutional boundaries. In theory, it would study how health communication works, not merely at an individual doctor-to-patient level, but also how mass communication affects Americans’ health. Researchers could examine how, for example, testimonials affect patients’ use of vaccines or other therapies.

Serious money was on the table. The agency was prepared to spend more than $150 million over five years on the endeavor.

For researchers, it’s a necessary complement to the agency’s pioneering work in basic research. The NIH has “done a remarkable job discovering the way cells communicate with each other,” said Dean Schillinger, a researcher at the University of California-San Francisco. “When it comes to how people communicate to each other — doctors to patients, or doctors with each other — the NIH has been missing in action.” Now, he said, the tentative efforts to reverse that are met with a “chilling effect.” (Schillinger co-authored an opinion piece in JAMA on these developments.)

After favorable reports from an agency’s advisory body last fall, advocates were anticipating more encouraging developments. Indeed, the NIH’s budget had touted the concept as recently as March. And participants expected the grant application process would begin toward the end of the year.

Instead, researchers have heard nothing through official channels. “Investigators have been asking, ‘What’s the plan?’” said Schillinger. Officially, “it’s been the sound of silence, really.”

That has been a puzzling anticlimax for a program that seemed to have all the momentum. “Given the urgency of misinformation, you would expect — within a year — a formal announcement,” said Bruce Y. Lee, the executive director of the City University of New York’s Center for Advanced Technology and Communication in Health.

Advocates and sources involved with the process had been pleased with its progress leading up to Tabak’s sudden reversal. After Collins publicly floated the concept in late 2021, the agency took some public steps while defining the project, including holding a workshop in May 2022, keynoted by Collins.

Later that year, the project’s leaders presented the concept to the agency’s Council of Councils, a group of outside researchers who provide feedback on policy initiatives and projects. It got a warm reception.

Edith Mitchell, an oncologist at Thomas Jefferson University Hospital in Philadelphia, said the agency had a “major task, but one that is much needed, one that is innovative.” The council gave the proposal a 19-1 seal of approval.

Researchers were happy. “As far as I was concerned, this program had been funded, accepted, and approved,” Schillinger said. (The agency says that it is “not unusual” for programs not to move forward but that it does not track how frequently programs get affirmative votes from the council and later don’t move forward.)

That smooth sailing continued into the new year. In March, the program was mentioned in the NIH budget as one of the agency’s potential projects for the coming years. Then, say sources in NIH and elsewhere in government, came Tabak’s sudden decision in April, which was not communicated to some researchers until June.

Early that month, Schillinger said, he received a call from an NIH official saying, “The program has been killed.” Program officers were reaching out to academics who had made prior inquiries about the initiative and potential research efforts that could garner grants. Schillinger said researchers were told, “You’re not getting an email” from the agency.

A former White House staffer and two current NIH officials — who were granted anonymity because they didn’t have permission to speak on sensitive matters — said the decision, which came as researchers and agency officials were preparing to open grant applications in the last quarter of the year, was made by Tabak. KFF Health News asked Tabak for an interview but instead got an answer from agency spokespeople.

The agency disputes any final decision about this research funding that has been made. Spokesperson Amanda Fine told KFF Health News the project was “still in concept phase” and is “being paused to consider its scope and aims.”

But the agency lists the health communications proposal on the “former programs” part of its website, and sources inside and outside of government disagree with this company line. They point to political fears on NIH’s part as driving the change, which reflects the growing political controversy over studying anything related to misinformation, even though the proposal was set up to examine health communications broadly, not solely misinformation.

A hint of this reasoning is contained in the rest of Fine’s statement, which notes the “regulatory and legal landscape around communication platforms.” When pressed, the agency later cited unnamed “lawsuits.”

That’s likely a reference to the Louisiana case, which was decided weeks after the agency decided to pause or kill the Common Fund initiative.

Fine later offered a new explanation: budgetary concerns. “We must also balance priorities in view of the current budgetary projections for fiscal years 2024 and 2025,” she wrote.

That explanation wasn’t part of a June 6 note on the program page, and one NIH official confirmed it wasn’t part of previous discussions. When pressed further about the agency’s budgetary position — which analysts with TD Cowen’s Washington Research Group think will be flat — spokesperson Emily Ritter said, “The NIH does not have a budget projection.”

Print Friendly, PDF & Email


  1. KLG

    Although there is an underlying amount of logrolling in basic research funded by NIH (the club is difficult to join at success rates hovering at 20% for the past 17 years), “outcomes” from funded extramural research are generally good and useful.

    But as noted in the Introduction to this post, the problems lie primarily in our healthcare system. This has been covered at NC from many perspectives.

    Personal anecdata helps explain this, but YMMV. Several years ago I presented my analysis of American diet dogma related to the Diet-Heart Hypothesis to my Department of Internal Medicine. This “movement” demonized the traditional balanced diet that those of us of a certain age remember. The short version is that fat, cholesterol (not a fat), and protein to some extent came to be viewed as villains, “Eat fat, get fat; Eat eggs, clog your arteries with cholesterol.” Evil cholesterol made the cover of Time magazine. This led to the substitution of meat, eggs, and fat calories by processed carbohydrates. The epidemic of diabesity ensued and by the late-1980s Gerald Reaven described metabolic syndrome. In 2015 IIRC cholesterol was removed from dietary guidelines because there is no evidence that dietary cholesterol needs to be controlled. This did not make the cover of Time magazine, or its equivalent.

    Statins are now widely prescribed, whether they work or not for most patients. Patients with very high cholesterol levels do benefit, but these patients are not all that common. The evidence that statins are useful and healthful is very thin. I outlined this in my talk to the internists, including residents. I expected a lot of push back after my talk. But the response was favorable. One internist, who agreed with the general thrust of the argument, said that they would still send their heart patients home with an obligatory statin prescription and recommend a low-fat diet. Standard practice. Or dogma. Statins rank high among the most prescribed drugs in the United States. The latest arguments for their use cite their anti-inflammatory properties. Maybe.

    This morning was the first day of medical school for our second-year students, who begin with Cardioliogy. I mentioned to two students that they should read the statin literature with a critical eye. They promised to do so, but also replied that an internist who does not prescribe statins to a heart patient may be sanctioned or worse. Seems like we have seen this before.

    1. Objective Ace

      they promised to do so, but also replied that an internist who does not prescribe statins to a heart patient may be sanctioned or worse

      I’ve heard Dr Aseem Malhorta acknowledge this. He gets around it by being honest with the patients about the pros and cons. When the data is presented as best case: live an extra 3 days *on average* (best case because this is industry data) but the possibility of x y and z side effects most of the prescriptions go unfilled.

      This was on the Max Lugavere (The genius life) podcast if anyone is interested

    2. Antagonist Muscles

      On this website, we tend to view the war on drugs as an abject failure. One notable reason for this is war is a uniquely human activity, waged against another nation or party. Thus, waging war on an inanimate object like drugs is as silly as crediting an inanimate carbon rod for saving the day. (In Rod We Trust! did make the fictional Time magazine cover.) The powers that be likely disagree. They aggrandized themselves with the power to censor and censure political dissidents under the pretense of the dangers of illicit drugs, some of which are incredibly similar to pharmaceutical drugs.

      Since this post is about the (mis)communication of medical information, perhaps we should create a facetious war on cholesterol. The lipid hypothesis—the theory that dietary cholesterol leads to increased blood cholesterol—has been debunked, but the idea of eradicating cholesterol is perpetuated, even by those who should know better (doctors) as noted by KLG. Then there is the whole bifurcation of cholesterol into “good” and “bad” cholesterol. Did that improve truthful messaging? If the explicit message of stating cholesterol lowering statins do not improve medical outcomes, especially for those who are not at high risk of heart disease, perhaps a facetious “war on cholesterol” might make some reconsider. I am no expert on effective propaganda or how to influence large numbers of people, but why exactly are we (over)prescribing statins? Oh right. Money. (But not your money.)

      The lab results from my last two blood draws state that I have high cholesterol by a minuscule amount over the top of the range. Neither my doctors nor I are concerned. I keep in great shape and probably look 15-20 years younger than I actually am, besides the increasing amounts of gray hairs I have and the expanding amounts of visible skin on my forehead. My diet is good as I cook nearly all my meals, and I never eat any food-like industrial product. Poor diet and lack of exercise are two of the biggest risk factors for heart disease and diabetes. Knowing that I am at low risk for heart disease, my doctors don’t even bother talking about cholesterol. (We tend to talk about the rare and mysterious neuropathic pain I suffer.)

  2. Val

    “I do think we need to understand better how — in the current climate — people make decisions,”

    I share this interest. Particularly those people who 1) feign expertise and concern in mass media organs and are 2) wholly credentialed in the attending corporate-state-pseudo academic structures but 3) have by every objective measure demonstrated an intriguingly persistent and vectored incompetence that was/is obscured by expansive state censorship and psychological operations. Scrutinizing the decisions of this very sophisticated, relatively small group should be a priority given the theatricality and cost of their blazing performance deficiencies.

    Yves describes the core problem in the intro, as usual. Fanboy, pom poms here.

    1. Societal Illusions

      one only need follow the money which leads to fake ott that we have a medical billing system not a health care system.

      “the problem is that patients won’t submit to the authority of an often-corrupt medical establishment.” speaks to many – even most – of our institutions. I am beginning to find less differences and more similarities in all of it. God forbid any distrust of liars?

  3. Terry Flynn

    My ultimate boss around the millennium was Paul Dieppe – who was the “key public person” among the team who showed the Vioxx scandal. He was publicly thrown out of a (USA led) medical group. Then got reinstated with a “medal” when he was proved right.

    He taught me so much about medical shenanigans.

  4. maipenrai

    “But instead of recognizing that the problem is the fundamental deterioration of the practice of medicine, which has accelerated due to the corporatization of medicine, the NIH really appears to believe the problem is that patients won’t submit to the authority of an often-corrupt medical establishment.”
    This needs to be said over and over again. Most are still unwilling to confront this fact. Especially most of us inside the system.
    The system is breaking. Well to be honest, we have no system. Just a bunch of thieves. Clever ones with little to no regard for their fellow humans.

  5. John R Moffett

    As a research biologist, I can attest to the fact that “medical science” is indeed more like a medieval art than a science. Biology is a tough field because of its complexity and odd interconnections and interactions, and medical students do not study that to any helpful extent. Biology courses are required, but not enjoyed or internalized by most med students. Now, medical practice is about what drug or surgical procedure to apply for a specific treatment, not about health. Unfortunately, biology has also been lobotomized into a drug discovery program, so trying to figure out how things actually work is not on the to-do list.

  6. Adrian

    Although the criticisms of the intro are valid they are a bit misdirected at the NIH. The puppies of the NIH is to find research not the practice/delivery of medicine. For example, 70% of NIH funded principle investigators are not MDs but rather PhDs. Also health communication is a critical element of how those research findings get utilized via public health professionals and the general public. For example, NIH funded research has shown PrEP to be a safe and effective way to prevent acquisition of HIV, but a lot of the people who should be taking PrEP don’t know this or have only received poor quality messaging about it. Health commutation is really important in getting people to adopt behaviors that will benefit them.

    It’s a huge problem if that communication is delivering the wrong message of course, like fat is bad, etc but better messaging and better ways of reaching people isn’t always propaganda and spin.

    Another example, better communication is what stopped the west Africa Ebola epidemic, messaging delivered by people the affected communities trusted delivered in a way that they connected with led to people stopping or changing the behaviors that were driving transmission.

  7. dao

    A friend’s doctor is retiring earlier than he wanted to. He was being pushed to meet “prescription quotas” and he is quiet quitting before he actually quits. Friend (who is in her 60s) has never been on any “maintenance meds” like statins.

    The whole COVID vaccine push (I refused to get) has turned me off from all vaccines, period. I will never get another one. As far as “The Science”, I never trusted it in the first place, never mind now.

  8. Harold

    It is absolutely true that medicine is an art rather than a science. Those who think otherwise are engaging in scientism.

Comments are closed.