How Can We Promote Evidence-Based Medicine Under a Regime that Insists on Its Power to Say "2+2=5"?

Introduction: Evidence-Based Medicine

We have consistently advocated for Evidence-Based Medicine (EBM), which is about medical-decision making based on critical review of the best applicable evidence from clinical research informed by knowledge of biology and medicine, of the patient's biopsychosocial circumstances, the patient's values, and of ethics and morality. Since EBM depends on the availability of evidence from the best clinical research, we have advocated for the integrity of clinical research, and decried  manipulation of clinical research done to increase the likelihood that its results would please vested interests, and suppression of research whose results offended such vested interest, sometimes done when manipulation did not succeed in producing such pleasing results.

Addressing such threats to the evidence-based required challenging the role of large for-profit corporations, principally pharmaceutical, biotechnology, and device companies, in clinical research.  In doing so, we depended on support from other concerned health care professionals and scientists.  Sometimes, when manipulation and suppression crossed over the line to become fraud and deceptive marketing, government regulators and lawyers stepped in.  We have discussed numerous legal settlements involving penalties - admittedly, often less severe than we would have preferred  - on particular corporations.

So we have counted on governments having a shared interest in promoting the integrity of clinical research, and more broadly of clinical and public health science, and when necessary, acting to enforce such integrity.  

However, we have increasing reason to doubt these shared interests under the current US regime.



Administration Comfort with Suppression of Speech about Research

Consider episodes in which political appointees of the Trump regime seemed comfortable with the suppression of speech about medical, health care and public health research.

In 2016, we discussed several cases in which officials at the Department of Health and Human Services stifled responses to journalists about scientific issues.  In particular, employees of the Center for Disease Control (CDC) were told not to respond to any journalists' requests for information, even "simple data-related questions," in lieu of responses from agency public relations personnel.

In 2017, we discussed how President Trump's first Secretary of Health and Human Services, Dr Tom Price, had been involved in attempted suppression of the results of research about the drug Bildil at the behest of a previous campaign donor.

In addition, three recent episodes, one from August, 2019,  two more in late October, suggest that under Trump, open discussion of the science pertaining to health care and public health, and the pursuit of scientific truth in these areas have been increasingly subordinated to politics, and particularly to supporting the notion that the President is sole keeper of all truth. 

Silencing National Intstitute of Mental Health (NIMH) Scientists about the Relationship of Mental Health to Violence to Avoid Contradiction of a Trump Tweet


Per a Washington Post article from August 20, 2019, after mass shootings in El Paso, TX and Dayton, OH,

'Mental illness and hatred pull the trigger. Not the gun,' Trump said immediately after the shootings. In the following days, he reiterated that statement, arguing that the United States should reopen mental institutions shuttered decades ago as a way to address mass shootings.

But then,

federal health officials made sure no government experts might contradict him.

A Health and Human Services directive on Aug. 5 warned communication staffers not to post anything on social media related to mental health, violence and mass shootings without prior approval.

The particulars were as follows:

On Aug. 5, Trump was scheduled to speak following the weekend shootings. That morning, some HHS employees, including those at the National Institutes of Health, received an email asking those who contribute to official social media accounts to hold off on posts until 'we get the green light from HHS,'

Then,

some employees received another email from Renate Myles, an NIH spokeswoman. Social media posts could resume, the note said, butemployees were asked to 'please send any [social media] posts related to mental health, violence or other topics associated with mass shootings for review before posting.'

The second directive applied most directly to the National Institutes of Mental Health, where nearly all of the agency’s social media activities relate to mental health. It remains unclear how many people received that instruction, which was lifted by week’s end.

The administration's explanation was:

'It’s the department’s long-standing practice to not get ahead of the president’s remarks,' HHS spokeswoman Caitlin Oakley said. 'This allows the president to share his message first with the nation. Any suggestions that this was a formal policy put in place related to social media, or meant to stymie work on this issue, are factually inaccurate. These were staff-level discussions seeking to be sensitive and respectful to the victims and their families affected by tragedies of that weekend.'

However,

By contrast, two former senior health officials in the Obama administration said they did not recall ever receiving such a directive after a mass shooting.

Also,

In the days and months following the mass shooting at Sandy Hook Elementary School in Newtown, Conn., which killed 20 first-graders and six staff members, the National Institutes of Mental Health spoke extensively about mental illness and violence. 'The conversation has evolved, recognizing that violence most often associated with mental illness is suicide, and that most violence is unrelated to mental illness,' the NIMH director said at a meeting three months later. NIMH also hosted a special panel discussion, How Sandy Hook is Changing the Conversation,' during which mental health experts worked to dispel stereotypes that link mental illness to violence.

After this month’s shootings, however, NIMH and its director were largely silent on the shooting. The only mention on the official NIMH Twitter account was a retweet of the NIH account, directing those struggling with grief and emotional distress to the Substance Abuse and Mental Health Services Administration for counseling and support.

Furthermore,

An HHS employee who spoke on the condition of anonymity to describe internal discussions said he had 'no doubt this was meant to prevent anybody from making any statements that might contradict the president.'

The Post consulted one ethics expert:

'To say that scientists and experts who know the data and facts best are not allowed to speak — that’s very concerning,' said Dominic Sisti, a University of Pennsylvania professor who studies ethics in mental health and psychiatry.

Silencing the Director of the National Institute of Environmental Health Sciences (NIEHS)  and National Toxicology Program to Support Industries Favored by the Administration

The case had to do with the health risks posed by PFAS, industrial chemicals found in the environment.

Per an October 24, 2019 article in The Intercept, the background is:

the company that first developed both PFOA and PFOS and sold PFOA to DuPont for many years, still argues that the compounds do not cause health problems. In her testimony before the House Committee on Oversight and Reform in September, Denise Rutherford, 3M’s senior vice president of corporate affairs, said that 'the weight of scientific evidence has not established that PFOS, PFOA, or other PFAS cause adverse human health effects.' The company also requested that The Intercept remove the word “cause” in a recent article about PFAS. That request was denied.

However, Linda Birnbaum, recently retired director of the National Institute of Environmental Health Sciences and the National Toxicology Program, thought

'In my mind, PFAS cause health effects because you have the same kind of effects reported in multiple studies in multiple populations,' she said in a phone interview. Birnbaum pointed in particular to longitudinal studies, which follow populations’ exposures and health over time. 'You have longitudinal studies showing the same effects in multiple populations done by multiple investigators and you have animal models showing the same impact,' said Birnbaum. In addition, she pointed to studies that show the mechanism through which PFAS chemicals cause harm in people.

'That is pretty good evidence that PFAS or certain PFAS can cause health effects in people. It is not as strong for every effect, but there are quite a number of effects where they’re strong enough to say ‘caused,’' Birnbaum said. She pointed in particular to the relationship between the chemicals and immune response, kidney cancer, and cholesterol in humans, saying, 'That data is very clear.'

Dr Birnbaum had upset industry in the past, but in particular,

Her run-in with Republicans on the House Science Committee last year may have had the most severe consequences. Reps. Andy Biggs and Lamar Smith accused Birnbaum of lobbying based on an editorial in the journal PLOS Biology. In it, Birnbaum wrote that 'U.S. policy has not accounted for evidence that chemicals in widespread use can cause cancer and other chronic diseases, damage reproductive systems, and harm developing brains at low levels of exposure once believed to be harmless.' She called for more research on the risks posed by chemicals and noted that 'closing the gap between evidence and policy will require that engaged citizens — both scientists and non-scientists — work to ensure that our government officials pass health-protective policies based on the best available scientific evidence.'

Under the Trump administration, there were consequences:

'everything was scrutinized that I did. Everything I did required clearance. Even in my lab,' said Birnbaum. 'All of a sudden, everything had to go up at least to building 1,' she said, referring to the Bethesda building that serves as the administrative center for the National Institutes of Health. Birnbaum was also denied a salary increase after the incident and became aware that her job was at stake. 'I was told that they were trying to fire to me.'

Also,

Birnbaum was not allowed to use the word 'cause' when referring to the health effects from PFAS or other chemicals.

'I was banned from doing it'” said Birnbaum. 'I had to use ‘association’ all the time. If I was talking about human data or impacts on people, I had to always say there was an association with a laundry list of effects.' Birnbaum said this restriction 'was coming from the office of the deputy director. His job hinged on controlling me.'

Again, while there is room for debate about whether PFAS causes the problems, or are simply associated with the problems.  However, the accusation is not that there was debate within the government, but that Dr Birnbaum's government supervisor silenced her opinions about causation, whaterver the evidence on which she based them.

Silencing the Director of the Centers for Disease Control and Prevention (CDC) Climate and Health Program About "Climate Change"

On October 29, 2019, CBS News reported that Dr George Luber, Director of the CDC Climate and Health Program, had to stop talking about "climate change," particularly its health consequences,

In late 2016 Luber was organizing a climate change conference. Al Gore was to be the keynote speaker. But right after Donald Trump was elected president, Luber's boss called him in.

Luber recalled, 'I was told the optics are not good and that I needed to cancel it.'

Correspondent Mark Strassmann asked, 'Did he explain what the optics issue was?'

"That the meeting was happening three weeks after the inauguration."

'And that the White House would be unhappy?'

'Yeah,' Dr. Luber said.

America's new president had a dim view of Luber's science, referring to climate change as a hoax, 'created by and for the Chinese.'

Dr. Luber said his boss wanted something else: 'Just don't say 'climate change.' Can you call it 'extreme weather?' Can you call it something else?'

Strassmann said, 'You're saying that the Centers for Disease Control was suddenly afraid to use the term 'climate change'?'

'Yeah. Absolutely. I was told to use a different term,' he said.

CBS confronted Dr Patrick Breyesse, Dr Luber's manager, who essentially gave a non-denial denial:

He's the senior manager who Dr. Luber said ordered him to scuttle the science conference.

'It wasn't cancelled; we postponed it,' Dr. Breysse said.

'You didn't feel any pressure at all?' Strassmann asked.

'No.'

'Politically?'

"No."

That conference happened, but without CDC sponsorship.

Strassmann asked, 'Were any CDC employees ever told, 'Stop using the phrase 'climate change'?'

'Not to my knowledge,' Dr. Breysse replied, 'but we did discuss it.'

'That you change from 'climate change' to 'extreme weather,' because 'climate change' was more radioactive?'

'We talked about making the change, but we never made the change.'

Meanwhile, it appears that CDC leadership retaliated against Dr Luber,

In March 2018 the CDC revoked Dr. Luber's badge, phone and credentials. He was escorted off the property. The CDC moved to fire him. He faced more than 30 'troubling allegations,' from falsifying timecards to seeming hung over. Dr. Luber refuted all but one charge, and was allowed to stay.

However,

Dr. Luber still works at the CDC, but potentially faces up to a four-month suspension. He has to work from home, where he reviews scientific papers unrelated to climate change.

When asked about that, Dr Breyesse responded

'I can't talk about personnel matters, I'm sorry, Mark,' he responded.

'Has he been banned from the campus?'

'So, that's a personnel matter that I can't discuss.'

'Is the CDC retaliating against him?'

'I'm just not going to comment on that,' he said.

A Larger Pattern

To summarize, in the second half of 2019, we have seen three episodes of scientists/ health care professionals at the premier US government health and public health agencies silenced about relevant issues to apparently avoid contradicting Trump administration political goals and/or the pronouncements of the President himself.  There is reason to suspect that agency leaders punished or retaliated against the scientists and health professionals for speaking out.

These appear to be part of a larger pattern.  There have been a lot of similar episodes involving other kinds of science.  For example, there was the infamous case of government climate scientists attacked after they contradicted a Trump tweeted his erroneous take on the course of Hurricane Dorian.  As the New York Times reported on September 8, 2019:  

The Secretary of Commerce threatened to fire top employees at the federal scientific agency responsible for weather forecasts last Friday after the agency’s Birmingham office contradicted President Trump’s claim that Hurricane Dorian might hit Alabama, according to three people familiar with the discussion.

That threat led to an unusual, unsigned statement later that Friday by the agency, the National Oceanic and Atmospheric Administration, disavowing the National Weather Service’s position that Alabama was not at risk. The reversal caused widespread anger within the agency and drew accusations from the scientific community that the National Weather Service, which is part of NOAA, had been bent to political purposes.

After that episode, the National Task Force on Rule of Law and Democracy developed a report on government attaacks on the integrity and rigor of government research, as summarized in an op-ed in the Washington Post on October 3, 2019, entitled "Under Trump, the integrity of government research is in shambles." The authors wrote,

This isn’t the first time this administration has retaliated against scientists for doing their jobs. The Agriculture Department recently decided to relocate an entire staff of career economists from Washington to the Kansas City area after they published reports on the financial harms of Trump’s trade policies. The Interior Department moved a climate scientist to an accounting role after he stressed the dangers of climate change to Alaska’s Native communities. A recent tally by the Union of Concerned Scientists listed more than 120 attacks on science by the Trump administration.

The report called for a variety of legislative solutions, but these may be insufficient.

The pattern may be even larger.  In the Atlantic, Quinta Jurecic, the managing editor of Lawfare, wrote on September 11, 2019,

The saga of Dorian is a snapshot of Trump’s refusal to accept the reality of a world that looks any different from what he wants to be true, and a demonstration of how such an instinct in a leader is incompatible with the requirements of democracy.

Furthermore,

Trump’s behavior regarding Dorian is yet another example of his strained relationship with the truth, something that is at this point so routine as to be barely worth commenting on. In the language of the philosopher Harry Frankfurt, he is a 'bullshitter'—someone who does not so much lie in order to consciously obscure the truth as make statements without any thought or care to what the truth might be. Bullshit, Frankfurt argues, is careless, in that it requires no commitment to a stable universe of facts. And Trump’s falsehoods are careless insofar as he makes them without any regard for consistency or internal logic, but there is also a stubbornness to them. His bullshit is a way of insisting that the world take the shape he wants it to have, regardless of the facts on the ground.

Government by BS is not just a threat to science and scientific discussion.

Democracy, as Arendt writes, depends on the existence of a shared universe of mutually agreed-upon facts—like whether or not it is raining in Alabama. It also depends on the willingness of leaders to acknowledge that some things, including the weather, are beyond their control. That is not Donald Trump’s way. He is the strong man standing alone at the front of the crowd, who is strong only when there is no one there to tell him differently.

Trump seems to want to be like the Inner Party in Orwell's 1984. In Part III, Chapter 2, when Inner Party member O'Brien interrogates and tortures Winston Smith, he says:

reality is not external.  Reality exists in the human mind, and nowhere else.  Not in the individual mind, which can make mistakes, and in any case soon perishes: only in the mind of the Party, which is collective and immortal.  Whatever the Party holds to be truth, is truth.  It is impossible to see reality except by looking through the eyes of Party.  

So when O'Brien holds up his hand with four fingers extended, and Smith says he sees four fingers,

And if the Party says that it is not four but five - then how many?

The Party says the answer must be "five"

So the answer to the question posed by the title of this post is "we can't"

As long as we are led by a President who believes he has the power to make 2 + 2 equal "5," we will be unable to meaningfully promote clinical research integrity, much less evidence-based medicine.  Any progress will only come with a new President.  

Free Press? Don't Need No Stinkin' Free Press - Center for Medicare and Medicaid Services (CMS) Tries to Intimidate Modern Healthcare Journalist

Remember the good ol' days, when most US challenges to free speech or the free press in health care came from aggrieved corporate or academic managers?  Now government health agencies have gotten into the act, never mind First Amendment guarantees of free speech and a free press.

CMS Attempted to Intimidate a Journalist for Modern Healthcare

This story first appeared on the blog of the Association of Health Care Journalists, and has now been summarized in only one media outlet, The Hill.  Per Felice Freyer, the Vice President of the AHCJ, Virgil Dickson, a reporter for Modern Healthcare, wrote a

Jan. 23 story about the abrupt resignation of Brian Neale, an official who oversaw Medicaid and helped move it in more conservative direction.

After providing statements from [director of the Center for Medicare and Medicaid Services (CMS) Seema] Verma and Neale, Dickson quoted 'industry insiders' who said the departure was prompted by 'some sort of disagreement between Verma and Neale that erupted in the past few days.' He also mentioned that one source said Neale had been concerned about the workload. 

That rather bland report seemed to displease the management of CMS.  Ms Freyer noted,

After the article appeared, Dickson received an email from Brett O’Donnell, a communications contractor working for CMS. O’Donnell called reports of a disagreement or workload problems 'false speculation' and said it was 'irresponsible' to mention them without more details.

Dickson stood his ground, noting that the information came from multiple, reliable sources. But he agreed to speak with Neale for clarification, and subsequently added Neale’s denial of a disagreement.

That was not enough for Mr O'Donnell:

The next day, O’Donnell wrote to Dickson’s editor, Matthew Weinstock, asserting that the article was inaccurate and demanding that the references to workload and the disagreement be excised. O’Donnell’s email also stated: 'Short of fully correcting the piece we will not be able to include your outlet in further press calls with CMS.'

The next week,

 Virgil Dickson, Washington bureau chief for Modern Healthcare — believed the agency was making good on its threat on Thursday when, he said, his phone went mute during a CMS press call and a woman’s voice told him he was not allowed to participate. An editor later confirmed with CMS officials that he had been banned from press calls, Dickson said.

The Context of the Intimidation


CMS is, of course, a government agency, and so must heed the First Amendment of the US Constitution, part of the Bill of Rights,

Congress shall make no law ... abridging the freedom of speech, or of the press

Nonetheless, this appeared to be a clear attempt to intimidate a reporter trying to uphold the tradition and guaranteed Constitutional right of freedom of the press.  As Ms Freyer wrote,

the attempt to alter a story by threatening to cut off access raises deep concerns among journalists.

'Administrator Verma seems to think she can bury inconvenient facts by threatening reporters with blacklisting,' said Ivan Oransky, M.D., president of the Association of Health Care Journalists, the world’s largest organization of reporters, editors, and producers covering health care.

'That tactic won’t work – truth will out,' Oransky said. 'But the very act of trying to stifle a press report is a frightening assault on the First Amendment. AHCJ intends to vigorously protest this bullying.'

Furthermore,

Aurora Aguilar, editor-in-chief of Modern Healthcare, told AHCJ that the incident is unlike anything she has seen in more than 20 years in journalism.

'I don’t think I’ve ever come across a situation where I was asked to remove something from a story in a way that felt like censorship,' she said.

Making this all the more extraordinary, consider some more background.  Modern Healthcare is hardly some revolutionary pamphlet, and Virgil Dickson was not aspiring to be another Thomas Paine.  As Ms Freyer wrote,

Aguilar said Dickson is known as a thorough and fair reporter. Modern Healthcare, whose subscribers are chiefly executives from health care systems and insurance companies, publishes articles about CMS once or twice a day.  

As an aside, Mr O'Donnell, who seemed to be acting as Seema Verma's bully, is not a CMS, or government employee.

O’Donnell, the consultant who threatened to blackball Modern Healthcare, is not a member of the media affairs offices for CMS or for HHS.

He was only described as a "contractor."  He also is a contractor with a checkered past.

He is a Republican strategist who has helped GOP candidates in their political campaigns. In 2015,O’Donnell pleaded guilty to lying to U.S. House ethics investigators about how much campaign work he did with money that came from office accounts rather campaign accounts.

The USA Today story linked above further stated that his guilty plea

is the first time anyone has been charged with a federal crime for lying to the House Office of Congressional Ethics, which was set up in 2008 to vet allegations against lawmakers and staff and recommend further action to the House Ethics Committee.

The charges against him included,

during his interview with OCE investigators, O'Donnell 'knowingly and intentionally made several false statements to OCE in an effort to minimize and conceal the true nature and scope of his role as it related to [Broun's] campaigns.' For example, he told OCE investigators, 'I never felt like any of my campaign work was expected as part of my duties.'

Summary and Discussion

It appears that  respected reporter for a well-known US health care business publication was barred from participation in CMS conference calls after some rather mild reporting on his part offended CMS leadership.  There seemed to be an attempt to intimidate the reporter by a federal "contractor" paid by CMS, a contractor who was a criminal, that is, who had pleaded guilty to a federal crime of lying to the Conressional Ethics office. 

 How far have we descended.

On Health Care Renewal we have been writing about attempts to limit free speech or free discussion in the press in the health care sphere for more than 10 years.  Through 2015, nearly every case we discussed involved large academic institutions, hospital systems, or for-profit health care corporations trying to limit criticism of their products, actions, leadership, etc.

I do not recall any serious cases involving US government agencies.  After all, the US has a long tradition of freedom of speech and the press, enshrined in our constitution.

However, in 2016, we started viewing with alarm the implications of candidate then President Donald Trump's apparent attempts to intimidate the press and citizens who exercise their rights of free speech (e.g., look here).  Now we have a US government health agency slipping into the role of thought police, and using the hired services of a federal criminal to intimidate a journalist.

The anechoic effect is now being shrouded in much deeper shadows.  We may need a new Thomas Paine.

ADDENDUM 13 February, 2018 - This post was republished in OpEd News on February 12, 2018.

"The Censorship That It is" - Now Threatens US Government Health Agencies (DHHS, CMS, CDC)

On Health Care Renewal we discus the dark side of health care, particularly of the leadership and governance of health care, that has enabled health care dysfunction.  Our discussions are based on publicly available information, often produced by dogged health care journalism.

Uur work has become more difficult as journalism is challenged by economic circumstances.  Yet now there are worse threats.  Despite First Amendment protections of freedom of speech and the press, journalism is now under fire from the highest reaches of US government.

Information Blockade at the Department of Health and Human Services

Two recent articles in the Columbia Review of Journalism pointed to specific problems  The first, "Under Trump, Health Reporters Confront an Information Blockade," September 7, 2017, focused on decreasing transparency at the US Department of Health and Human Services (DHHS), and its Center for Medicare and Medicaid Services (CMS).  It provided numerous examples of officials failing to respond to apparently straightforward requests for legitimate health care information.  For example,

Washington Post healthcare reporter Paige Winfield Cunningham recently raised a few serious questions about how the Trump administration planned to manage Obamacare’s fall enrollment season. 'The six-week sign-up period will be the first handled exclusively by an administration that’s hostile to the Affordable Care Act,' Cunningham wrote, 'and one that hoped by now to see Congress pass legislation unraveling much of the law.'

Any reporter might have asked the questions Cunningham put to the Department of Health and Human Services, some of which she published in her daily Health 202 column:

Will the government contact current enrollees to alert them that sign-ups will last just 45 days, about half as long as in the past three years? Will HHS run call centers for consumers who need help as they look for plans? Will the HealthCare.gov computer system be adjusted to accommodate a possible crush of shoppers given the shorter sign-up period? And how will automatic enrollment be handled?

HHS offered no answers, although a spokesperson for the department’s communications staff did provide Cunningham with a statement: 'As open enrollment approaches, we are evaluating how best to serve the American people who access coverage on HealthCare.gov.' Even that statement did not stand for long, reported Cunningham:

An hour later, the spokeswoman, Jane Norris, requested that the statement be withdrawn, saying that she did not have permission to release it. When I asked her again for detailed answers, neither she nor anyone else at HHS responded further.

'Nobody at HHS ever reaches out to me,' Cunningham told CJR during an interview.

Also,

Matt Wynn, data reporter for MedPage Today, went public with his troubles prying loose the data underlying a series of maps CMS sent out this summer. One map published in early June identified counties without insurers selling policies on healthcare.gov this fall, and a news release announced at least 35,000 active Exchange participants live in counties projected to be without coverage in 2018.' Wynn asked CMS to see the numbers supporting those conclusions.

I shot an email to the media relations office in the department, asking for the data behind the map.

About an hour later I got a response. No further information would be shared at this time, wrote Shelby Venson-Smith, a public affairs specialist. Adding insult to injury, the non-response was not to be used as a direct quote, the email said.

However, while DHHS and CMS officials resisted responding to uncomplicated requests for information,

they seem to have plenty to say in their news releases and email blasts, which disparage the health law and sound more like campaign propaganda and GOP talking points than routine communications from a federal agency. The Obama administration was not shy about using the same PR tools to boost the ACA. But messages from HHS now feel substantively different, perhaps because they are aimed at denigrating a law they have a legal responsibility to administer.

Thus officials at DHHS seem to now be more interested in following the party line of the current administration than in providing basic information to the public.

Many other health care journalists experienced similar problems, including Charles Ornstein from ProPublica, Dan Diamond of Politico, Harris Meyer of Modern Healthcare, and Noam Levy of the Los Angeles Times.

Trudy Lieberman, the author of the CJR article, wrote,

HHS and CMS are powerful agencies that could decide the future of critical programs like Medicaid and Medicare, the Obamacare insurance marketplaces, and whether or not hospitals are considered safe. But when agency press officials avoid interviews and refuse to answer questions, it’s hard to present their positions fairly and understand whose side they are on. Government agencies are supposed to be objective about industry practices under their jurisdiction. But if reporters cannot get honest information about the industries they regulate, where can they go?

Kathryn Foxhall, who "works with the Society of Professional Journalists on freedom of information issues," put it this way,

I don't see the administration ever stopping what they are doing, unless we as journalists pull out all stops and call it the censorship that it is.

Public Health Without Public Information?

Worse, one week later, CJR published another article  on the US Centers for Disease Control (CDC).  The CDC is the lead US public health agency.

Axios published text from a late August email by a CDC public affairs officer that directs staff to route any correspondence with journalists—'everything from formal interview requests to the most basic of data requests'—through the communication office at its Atlanta headquarters:

'The message—sent by public affairs officer Jeffrey Lancashire and dated Aug. 31—instructs all CDC employees not to speak to reporters, ‘even for a simple data-related question’… Lancashire did not respond to requests for comment about the policy. But I’d love to know what harm was being done by CDC employees answering ‘the most basic of data requests.’'

Thus CDC officials now seem to want to substitute public relations for straightforward information provision.  Given that the mission of CDC is public health, this seems to be an example of mission-hostile management, a concept we have used most often to refer to the management of private health care organizations, not US government agencies.  Charles Ornstein of ProPublica commented

This is genuinely disturbing. The idea that someone at CDC headquarters needs to sign off on responses to basic data requests shows a level of media control beyond which I have ever seen. What’s next?

Felice Freyer of the Boston Globe tweeted

CDC is employed by taxpayers. Why shouldn't its work be readily shared with them?

At Health Care Renewal, we have often discussed the anechoic effect, a taboo against public discussion of many aspects of health care dysfunction, particularly those that might discomfit people who are personally profiting from the current system.  In particular, the currently dysfunctional health care system has made the leaders of big health organizations, particularly for-profit corporations,  hugely wealthy.  Furthermore, big health care organizations have been eager to develop financial relationships with health care professionals, academics, leaders of non-profit organizations and NGOs, etc, leading to a web of conflicts of interest draped over health care.  Who wants to speak out when doing so may offend not only distant CEOs, but also one's colleagues, bosses, friends, relatives etc who may have financial ties to those CEOs' corporations?  Furthermore, who wants to speak out when large corporations command huge marketing and public relations operations that can be used to drown out unwanted ideas, and legal departments ready to threaten litigation?

Now government health care officials seem to be enlarging their own public relations efforts while shutting off access of honest information.  This will only make open discussion of the true causes of health care dysfunction more difficult. 

Even more chilling is the threat that health care officials now may be attempting actual censorship.  We have depended on health care journalists to root out bad behaviors that lead to health care dysfunction, and by doing break taboos about discussion such behaviors.  Up to now we have assumed at least that government would not make it harder for journalists to do their job, protected by the Bill of Rights protections of free speech and a free press.  But now the current administration seems to be taking the side of censorship.

From Censoship to Incitement of Violence?

Even worse, some worry that the regime's hostility to journalists  threatens their actual harm.  In early September, the New York Times reported on comments by the United Nations High Commissioner for Human Rights, who

was reacting to Mr. Trump’s recent comments at a rally in Phoenix during which he spoke of 'crooked media deceptions' in reports of the violent clashes at a white nationalist rally in Charlottesville, Va., that resulted in the death of a counterprotester.

In Phoenix, the president’s words also appeared to whip up audience hostility toward journalists.

The failing @nytimes writes false story after false story about me. They don't even call to verify the facts of a story. A Fake News Joke! — Donald J. Trump (@realDonaldTrump) June 28, 2017

'It’s really quite amazing when you think that freedom of the press, not only a cornerstone of the Constitution but very much something the United States defended over the years, is now itself under attack from the president himself,' [UN official] Mr. al-Hussein said. 'It’s a stunning turnaround.'

Furthermore,

'To call these news organizations fake does tremendous damage,' Mr. al-Hussein added. 'I believe it could amount to incitement. At an enormous rally, referring to journalists as very, very bad people — you don’t have to stretch the imagination to see then what could happen to journalists.'

Ominously, the response from the White House included more unsubstantiated charges of "false narratives," and threatened media tha fails to be responsible as judged by the regime, never mind the First Amendment and its promise of free speech and a free press. 

the White House press secretary, Sarah Huckabee Sanders, said in an emailed statement, 'We believe in free press and think it is an important part of our democracy, but the press also has a big responsibility to the American people to be truthful. Their job is to report the news, not create it.

'Is it not ‘dangerous’ for the media,' she continued, 'to create false narratives and overzealous attacks against the president that the American people chose to be their leader? The president is focused on growing our economy, creating jobs, securing our border and protecting Americans. Since those are also the priorities of most Americans, hopefully the media will make covering them theirs.'

Strong, even overzealous verbal and written attacks on politicians, the president included, have been essential parts of American democracy since the Bill of Rights was ratified.  The First Amendment shows that our political system values such boisterous discourse.  The White House press secretary thus threatened not only the press but the fundamental US system of government.  

Strategic Hostility

Finally, there is an argument that the regime's attacks on the media may not be just reckless, but  strategic and calculated.  The UN Special Rapporteur on the promotion and protection of the right of freedom of opinion and expression, Prof David Kaye of University of California - Irvine School of Law, wrote,

The President’s attacks may be reckless – who knows whether someone in his audience will take the President’s word as license to take action against enemies of the American people? – but they are not without purpose. They have concrete aims: to intimidate reporters into certain kinds of coverage, or clarify for his favored outlets what coverage he desires, or plant the seeds of doubt about news stories (such as the Russia investigation led by Robert Mueller).

Also,

However, when we tie together the jeremiads and rhetoric with what the Trump administration is doing in other governing spaces, the practice of attacking the press becomes clearer as policy than solely reckless rant.

First, the attack on the press is not merely rhetorical; it is increasingly reflected in policy.

And,

Second, Trump’s incendiary statements work in tandem with a pattern of lying and disinformation, both aiming to limit the accessibility of truthful information. 

And,

Third, the administration operates as if it has something to hide.

Who knows what they might be hiding.  But there certainly have been plenty of accusations of  severe conflicts of interest and corruption affecting the Trump presidency?

Summary

Up to last year, I was cautiously optimistic that the anechoic effect was starting to erode, enabling the health care discussion to begin to encompass the deeper causes of health care dysfunction.  Since November, however, we seem to be going backward.  What little openness and transparency that were developing are at risk of sinking under a new tide of propaganda and censorship.  My concerns have primarily been about health care and health care dysfunction, but the larger trends threaten our whole society and the ability of the US to maintain itself as a republic.  Ben Franklin's warning becomes more acute.  What we have is only 

A republic if you can keep it. 

That will now take some work.  

Northwestern Upholds its "Brand," Never Mind Free Speech and Academic Freedom

Threats to free speech and academic freedom in health care were a major concern when we started Health Care Renewal.  Such threats may now be less anechoic, but do not seem to have diminished.

Censorship and the Resignation of Alice Dreger

The latest example was at Northwestern University. The basics of the case appeared in the Chronicle of Higher Education. Alice Dreger just resigned her position of 10 years as "a clinical professor of medical humanities and bioethics."

What prompted her departure was the fallout over an article by William Peace, who at the time was a visiting professor in the humanities at Syracuse University. Mr. Peace wrote an essay for an issue of the journal, Atrium, that Ms. Dreger guest-edited. The essay is a frank account of a nurse who helped Mr. Peace regain his sexual function after he was paralyzed.

According to Ms. Dreger, Eric G. Neilson, vice president for medical affairs and dean of the university’s school of medicine, tried to censor the essay. The essay is straightforward in its description of sex, and includes multiple mentions of 'the dick police,' but the purpose is to illuminate what went on in the era prior to disability rights and studies.

As Mr. Peace writes, the unconventional approach of the unnamed nurse 'injected a compassionate eroticism that made me a better man.'

In her letter, Ms. Dreger writes that the university allowed the essay to be published online only after she and Mr. Peace threatened to talk publicly about what they saw as censorship. She writes that she was 'disgusted that the fear of bad publicity was apparently the only thing that could move this institution to stop censorship.'

Now the essay is out there, for all to see, 'dick police' and all. So what does Ms. Dreger want?

She asked the university to acknowledge that attempting to remove portions of the essay was a mistake and to promise not to do so in the future. 'They never acknowledged that the censorship was real,' Ms. Dreger said in an interview. 'I wanted a concrete acknowledgment and assurance that my work would not be subject to monitoring.' That, she said, would have been enough for her to remain.

The idea that institutions must acknowledge wrongdoing is central to Ms. Dreger's academic work.

More details about university managers' alleged attempts to control the content of an academic journal emerged in an article in the local newspaper, that is, the Chicago Tribune.  The managers wanted to appoint their own oversight committee to control journal content.

The journal Atrium stopped publication after faculty objected to the new oversight committee, which [University spokesman Alan] Cubbage has described as 'an editorial board of faculty members and others, as is customary for academic journals.'

Note, however,  that editorial boards are usually appointed by journal editors, not managers or executives.

Also, as noted in an article in Inside Higher Ed,

Dreger, who guest-edited the 'Bad Girls' issue [in which the controversial article first appeared], said that soon after publication, medical school administrators asked Atrium’s editors to remove the essay from the web, because the content was considered inflammatory and too damaging to the new Northwestern Medicine 'brand.' (Northwestern Memorial Health Care recently acquired Northwestern’s Feinberg School of Medicine faculty practice and merged with Cadence Health to operate under the Northwestern Medicine banner.) The editor, another faculty member, refused to single out one article for censorship and took down the journal’s web archive instead.

Furthermore, the university administration's reaction to the publication of the article prompted another resignation,

The controversy prompted the resignation of Kristi Kirschner, a former clinical professor humanities and bioethics at Feinberg, in 2014. Kirschner, now an adjunct professor of disability and human development at the University of Illinois at Chicago, told Inside Higher Ed earlier this summer that the alleged censorship had a 'chilling effect, antithetical to the idea of the university.'

As for that "chilling effect,"

A university spokesman declined to comment on Dreger’s case on Tuesday, saying it was a personnel issue. He also declined to answer general questions about censorship or the status of Atrium, which recently had its funding reduced, causing the journal to be canceled.

Atrium’s editor, Katie Watson, an assistant professor of bioethics and medical humanities, declined an interview but said the funding cut was not related to the 'Bad Girls' issue or censorship.

She referred additional questions to a post she wrote for Peace’s blog, Bad Cripple, in June, in which she said that she was disappointed with Peace for taking certain details of the case public, and in which she confirmed that a university content oversight committee meeting had been 'disheartening.'

"[T]he medical school required me to allow a vetting committee to review my editorial choices and veto them if they were perceived to conflict with other institutional interests," Watson wrote.

So note that the allegations of censorship have come from at least three separate faculty members at Northwestern, and from the author of the censored article, a faculty member at another institution.  Furthermore, on university spokesperson has contradicted these charges.  

Previous Mysterious Events at Northwestern

Of further concern is that this case may be part of a pattern.

Two years ago we wrote (here and here) about another case, albeit mysterious and convoluted, at Northwestern in which a faculty member, Dr Charles Bennett, resigned after being accused of mismanaging the finances of a government grant.  However, although he was responsible for the scientific management of the project, university managers, nor Dr Bennet, were responsible for its finances.  While the university settled allegations of financial mismanagement, and a university staffer pleaded guilty to related charges, a university statement implied that it was mainly Dr Bennett's fault, per the Cancer Letter

'As the settlement makes clear, the covered conduct in the settlement involved allegations focused on Dr. Charles Bennett, and grants for which Dr. Bennett was the principal investigator,' Northwestern officials said in a statement.

In addition,

The statement was signed by Northwestern President Morton Schapiro, Provost Daniel Linzer, and Vice President for Medical Affairs and Dean of the Feinberg School of Medicine Eric Neilson.

Note that the Vice President and Dean Neilsen above was the same Dean who Prof Dreger accused of trying to censor her journal.

Suspicions were raised at that time that the treatment of Dr Bennett might have been somehow related to how he made himself unpopular by authoring research that suggested Aranesp, a blockbuster Amgen epoetin drug, was much more dangerous than it seemed.  The Cancer Letter had interviewed one of Dr Bennett's collaborators,

[Michael]  Henke confesses to wondering whether the many powerful enemies Bennett made in the pharmaceutical and biotechnology industries have struck back.

'We shouldn’t feed paranoia,' Henke said. 'However, given the exclusively positive experience when collaborating with his group, makes me wonder whether this litigation might follow some very particular other issues.'

And recently the editor of the Cancer Letter, and the author of the above article, has been fighting subpeonas from Amgen intended to make him reveal his sources of negative information about Aranesp, (look here and here).

As far as I can tell, the questions I raised about the case of Dr Bennett (look here and here) have never been answered.

Nonetheless, the case of Prof Dreger has also been rather anechoic.  It was also covered by the Times of London Higher Education Supplement, and inspired comment from FIRE, but has otherwise not gotten national media attention, or any apparent coverage in medical or health care journals.  

Sometimes you may be paranoid, and sometimes someone may be out to get you.
Summary and Comments

So, to summarize, multiple sources suggested that top Northwestern Medicine leadership attempted to censor an academic publication edited and led by university faculty.  After publication of an article apparently controversial for its sexual content, but which likely also brought up valid issues about compassionate treatment of disabled patients versus traditional ethical concerns about boundary issues for health professionals, university leaders imposed an oversight committee which apparently was more concerned about the instiution's "brand" and other "institutional interests" than about free discussion of important health care issues.  The chilling effects of this attempt at censorship seemed to include resignations by two faculty members, and the demise of the journal.

Thus it appears that the managers were putting public relations and revenue concerns ahead of the fundamental academic values of free speech and academic freedom, thereby threatening these values.  In a post on Bioethics.net, Craig Klugman reminded us,

 According to the American Association of University Professors (1940):
'Academic freedom is essential to these purposes [the search for truth and its free exposition] and applies to both teaching and research. Freedom in research is fundamental to the advancement of truth.'

Cary Nelson, president of the AAUP and an English professor says that academic freedom:
'Gives both students and faculty the right to express their views — in speech, writing, and through electronic communication, both on and off campus — without fear of sanction, unless the manner of expression substantially impairs the rights of others or, in the case of faculty members, those views demonstrate that they are professionally ignorant, incompetent, or dishonest with regard to their discipline or fields of expertise.'

Even the American Society for Bioethics & Humanities, which is known for not taking positions on 'substantive moral and policy issues,' does take positions to support academic freedom and has done so in the past.

Since 1940, the notion of academic freedom has been a core tenet of university and faculty life. The idea was born in response to centralized governments telling researchers what they could and could not study and what they should and should not teach.

So free expression and academic freedom remain under threat in academic health care institutions. These threats seem in part to stem from managers' continuing inclinations to put commercial concerns ahead of the academic mission, perhaps fueled by prodigious amounts of money waved around by health care corporations looking to make their marketing appear more scientifically based.  These threats may be partially enabled by the anechoic effect, a sort of second order self censorship, so that cases of censorship are another kind of recent unpleasantness that get little public attention.

Students, health care professsionals, and faculty members who care about medical education and research ought to be asking some hard questions about the leadership of their organizations.  It looks like Northwestern students, trainees, and faculty members could have lots of questions to ask.

As we have said until blue in the face, true health care reform would enable leadership of health care organizations that upholds and is willing to be accountable for putting patients' and the public's health first, and leadership of health care academic organizations that also puts honest, transparent research and education ahead of commercial interests.   

SILVERSTEIN v. [NAME REDACTED] HOSPITAL: MOTION TO PROHIBIT COMMENTARY ABOUT THIS LITIGATION TO ANY PUBLIC CONTEXT: Do computers have more rights than patients?

Herein is an issue of potential Internet censorship and/or attempted prior restraint of the rights of a citizen to express him/herself freely:

At my post "Hospital defense maliciousness, aided and abetted by attorneys who ignore the ABA and Pennsylvania's Ethical Rules of Conduct Regarding "Candor Towards the Tribunal" I wrote about how a defense attorney in a case I unfortunately am substitute plaintiff in, that involving EHRs and the injury and the death of my mother, violated the requirement under the Code of Conduct of lawyers to exhibit candor before the tribunal, and perhaps 18 Pa.C.S. §4904 relating to unsworn falsification to authorities as well.

As also mentioned, the lawfirm was displeased, but did not respond to my offer to consider amending any factually erroneous assertions at that post.

Now here is their response:

4/19/2013

Motion

BY [REDACTED] HOSPITAL MOTION TO PROHIBIT COMMENTARY ABOUT THIS LITIGATION TO ANY PUBLIC CONTEXT WITH MEMORANDUM OF LAW WITH SERVICE ON 04/19/2013

The court has yet to rule on this new motion and Substitute Plaintiff's (me) replies.

I will, of course, abide by the Court's decision.

First: I note that I have been writing about issues of court process, not the substance of the case's actual issues.   I think citizens have a right to know about process in their courtrooms.  I am also Joe Public, exercising my rights to freedom of expression; I am not an attorney breaking some rule of case publicity.  I am not even the suit's initiator.  What rule(s) am I breaking, exactly, I'd like to know from the Defense.

Further, in my opinion, considering that multiple authorities including the Institute of Medicine of the National Academies (link), FDA (link), Joint Commission (link), ECRI Institute (link), National Institute of Standards and Technology (link), AHRQ-Agency for Healthcare Research and Quality at HHS itself (link) and others have written about risks of health IT to patients and the need for far more study and data on the issue, in my view there is a compelling public interest in being informed about the progress of this lawsuit.

We have not reached the day yet, I hope, when computers have more rights than patients.

I note that if the involved lawfirm, Marshall Dennehey Warner Coleman Goggin, would stick to the Rules of Conduct for attorneys, it would seem they have nothing to fear.

I note the remarkable statement about "unjustified and malicious personal attacks against Moving Defendant and defense counsel", i.e., pointing out exactly what they did.  Namely, fail to provide the required Candor towards the Tribunal regarding an undisclosed decision on COM's, known to them (same hospital, same counsel) at the time multiple, frivolous contrary claims about COM's to harm my mother's case were made to the courts from 2010 to just recently in 2013. 

In fact, that statement itself may be an example of legal misconduct - rendering false charges and certifying them in writing to a court as true.  I note that I didn't write the Rules of Professional Conduct for attorneys; attorneys did, including Rule 3.3: "Candor before the Tribunal" whose obvious violation and my pointing it out is certainly not an "unjustified and malicious personal attack."

As far as "fair trials" go - their stated concern in this latest filing - the defense should have thought about that before breaking the aforementioned Rule of Professional Conduct, causing numerous delays.  (I wonder how many med mal cases with proper paperwork are stalled more than 2 years before Discovery even begins - the case was filed 7/16/2010.)

It seems to me that my mother deserved to be alive at the time of her fair trial ("Justice delayed is justice denied.")  I would certainly like to know if the Defense thinks otherwise.


-- SS

Apr. 19, 2013 Addendum:

As noted at Wikipedia regarding what appears to be a Motion for Prior Restraint:

Prior restraint is often considered a particularly oppressive form of censorship in Anglo-American jurisprudence because it prevents the restricted material from being heard or distributed at all. Other forms of restrictions on expression (such as actions for libel or criminal libel, slander, defamation, and contempt of court) implement criminal or civil sanctions only after the offending material has been published. While such sanctions might lead to a chilling effect, legal commentators argue that at least such actions do not directly impoverish the marketplace of ideas. Prior restraint, on the other hand, takes an idea or material completely out of the marketplace. Thus it is often considered to be the most extreme form of censorship. The United States Supreme Court expressed this view in Nebraska Press Assn. v. Stuart by noting:

The thread running through all these cases is that prior restraints on speech and publication are the most serious and the least tolerable infringement on First Amendment rights. A criminal penalty or a judgment in a defamation case is subject to the whole panoply of protections afforded by deferring the impact of the judgment until all avenues of appellate review have been exhausted. Only after judgment has become final, correct or otherwise, does the law's sanction become fully operative.

A prior restraint, by contrast and by definition, has an immediate and irreversible sanction. If it can be said that a threat of criminal or civil sanctions after publication 'chills' speech, prior restraint 'freezes' it at least for the time.

Also, most of the early struggles for freedom of the press were against forms of prior restraint. Thus prior restraint came to be looked upon with a particular horror, and Anglo-American courts became particularly unwilling to approve it, when they might approve other forms of press restriction.

-- SS