This is the second in an unplanned, occasional series about real people who are harmed by inaccurate, imbalanced, incomplete, misleading media messages. The first was about a man with glioblastoma brain cancer.

People with rare diseases may hang on any crumb of possible good news more than anyone else. Many have learned how to find and scour medical journal articles for signs of hope.

So it is with people who have primary ciliary dyskinesia or PCD, which, as the National Heart, Lung and Blood Institute explains, “is a rare disease that affects tiny, hair-like structures that line the airways. These structures are called cilia. If the cilia don’t work well, bacteria stay in your airways. This can cause breathing problems, infections, and other disorders. PCD mainly affects the sinuses, ears, and lungs. Some people who have PCD have breathing problems from the moment of birth.”

Early this year, the Journal of Medical Genetics published a paper with this headline: “Gene editing of DNAH11 restores normal cilia motility in primary ciliary dyskinesia.”

Many people with PCD who saw that journal article headline were excited. The news spread through the PCD community on social media like wildfire. And then today’s podcast guest had to temper that enthusiasm because of what the journal headline did not reveal. Our guest is Michele Manion, the executive director of the Primary Ciliary Dyskinesia (PCD) Foundation. She delivers another important message about how media messages – including, or especially, those from medical journals – can harm people.

It’s important to put a human face on such stories. The picture at left is of Michele Manion’s daughter, now in her 30s. She has some significant lung damage. But Manion says that her daughter is not slowed down too much in everyday life.

Manion also sent me group photos of people with PCD and their families – from New York, North Carolina, Minnesota, and this photo of a group in Saint Louis.

Real people, hanging on every bit of news offering hope about progress in research. Media messengers, including medical journal editors, should keep these faces in mind before they publish.

Key quotes from Michele Manion in the podcast:

• “We’re in this awkward position where we want patients to be excited about future of genetic therapies; to me this delegitimizes what can be done with gene editing.”
• “We don’t want to discourage patients about research but we were in a position to have to do that and have to explain the limitations of what had been demonstrated vs. what had appeared to have been demonstrated. That was challenging.”
• “I don’t think the intent is to harm patients. I think that’s part of the problem. The patient as the ultimate end user isn’t even part of the equation. That’s not who they’re trying to get to. They’re trying to get to funders, more press for their institution and somewhere in that thread the patient is completely lost.”

Thanks to The National Institute for Health Care Management Foundation for providing us with a grant to produce these podcasts.

Credit: podcast editor Cristeta Boarini

Musical bridge in this episode: “Fünf Stücke: Lebhaft” by Paul Hindemith, as played by Academy of St. Martin in the Fields Orchestra

Please note: if you have listened to any of our podcasts and like what you’ve heard, we’d appreciate it if you’d leave a Review and a Rating on the iTunes webpage where our podcasts can be found: https://itun.es/i6S86Qw. (You need to click on the “View in iTunes” button on the left of that page, then find the Ratings and Reviews tab.)

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All episodes of our podcasts are archived on this page on HealthNewsReview.org.

About half the editors at the most prestigious medical journals in the U.S. receive payments from the pharmaceutical or medical device industries.

But only 30 percent of these journals make it clear to readers what their policies are regarding such conflicts of interest.

Those are the findings of a Canadian study published last month in the BMJ. They raise major questions about the independence and objectivity of academic journals, which are a primary source of health care news.

Why should we be concerned about journal editors taking industry cash — as much as $1 million in some instances?

Editors at these journals are the primary gatekeepers in determining which studies get published and, quite often, which studies will be covered by the media. If they are influenced by industry money–whether that be via direct cash payments, research funding, or money given to their home institution–then our health care news can be tainted at its source.

Other highlights of the University of Toronto study include:

• Researchers estimated payments by looking at 2014 data from the Open Payments database and investigated 52 highly influential medical journals across 26 specialties.
• Median general payment was $11 but the range was wide ($0 to nearly $3,000). Two editors received over $1 million.
• Endocrinology, cardiology, gastroenterology, and rheumatology editors received the highest median payments.

Interestingly, six days before these results were published, researchers from Hawaii and San Francisco published an even more extensive study. It focused specifically on industry payments to physician editors and was published in PeerJ Preprints (therefore, not peer reviewed) with the following key findings:

• Nearly two-thirds of physician editors (from 35 influential journals) received industry payments over the 41-month study period.
• more than 1 in 7 received over $10,000 directly (not via their institution).
• 44 percent of cardiology editors received over $10,000 in 2015.

Of note, both studies are retrospective and observational in design. This means neither study can definitively claim that industry payments clearly affect editorial decisions in a cause-and-effect way.

One physician editor’s perspective

José Merino, MD

As we’ve written about before, there is a growing body of evidence showing that medical industry largesse does affect healthcare providers. And even if it didn’t, there remains the issue of public perception and trust whenever and wherever there is a reluctance to be transparent.

Dr. José Merino is acutely aware of this. He is an associate professor of neurology at the University of Maryland School of Medicine. He’s on committees with both the American Academy of Neurology and the American Heart Association because of his interest in the diagnosis and treatment of stroke. He’s also the US Research Editor at The BMJ.

“Editors have significant power because they decide what (and who) gets published,” says Merino, who adds he doesn’t take industry payments to avoid any real or potential conflicts of interest (COI) in his clinical, research, and editorial roles.

“So I think it’s reasonable to expect that editors should declare their actual and potential COI. At The BMJ, editors must fill out the same COI forms as the authors and these COI are listed on the website. Also, at the start of every manuscript meeting — where we discuss which papers may be accepted for publication — we ask editors to reveal financial and non-financial COI with the papers being discussed. If any exist, that editor does not participate in the discussion and may even leave the meeting.”

But given that the Canadian study found only 30 percent of journal websites disclosed their COI policy for editors, it’s hard to know how many journals are (or aren’t) as careful as The BMJ.

Thought leaders as a double-edged sword

Victoria S.S. Wong, MD

Many physician-editors at prestigious medical journals are considered “thought leaders” within their field. Their expertise, reputation, and influence make them highly sought after not just by the editorial boards of journals, but also by colleagues, professional societies, the press, and industry. Many, like Merino, also conduct research.

And this creates a dilemma, says Dr. Victoria Wong, lead author of the University of Hawaii/UC-San Francisco study. She points out that, on the one hand, “some physician-industry relationships are beneficial and can result in novel therapeutics or other medical contributions.”  But on the other hand, such thought leaders also are more likely to have multiple sources of funding that could pose real or perceived conflicts of interest. She elaborated on this in a recent interview with Retraction Watch:

“It would be ideal for most editors to have some significant research experience, but not at the expense of losing objectivity and transparency. The more funds that come from industry, the greater the likelihood that editorial decisions are not objective.

It is unfortunate that we’re discussing the incomes of the very people who are the gatekeepers of the medical research that drives health care policy and expenditure, yet our current system does not think it important enough to provide them them with a dedicated and unbiased source of income to do this job.”

What about the publishers of medical journals?

Michael L Callaham, MD

It’s worth noting that medical journals make considerable money from reprints and advertisements paid for by drug or device companies. Publishers rely on these lucrative arrangements as a major source of income. So does this add a third level of potential COI as we move upstream from authors, past editors, and up to publishers?

“Reprint and supplement payments to publishers could easily be a source of bias,” says Dr. Michael Callaham of UC-San Francisco, a co-author with Dr. Wong, who studies the peer review publication process.

“High-profile journals can make hundreds of thousands of dollars from Pharma or device manufacturers that way (by their purchase of reprints to distribute to physicians by their salespeople). As for supplements, they serve the same purpose, and in my experience they often don’t get the same rigor or objectivity of peer review as routine manuscripts.

“Publishers typically state that editors have full independence in choice of manuscripts, but if you believe a big reprint order will make your publisher happy (so that they value you and your journal more), that could influence editorial decision making. Also, some publisher contracts pay extra for ad revenue above a certain threshold, so some of those funds might trickle over to the editors and/or their projects. We don’t know how often this happens or if it happens at all.”

Callaham adds that, to the best of his knowledge, there are no regulations mandating that publishers disclose to their readers how much income they receive from reprints and supplements.

Some unanswered questions

The authors of both the Canadian and Hawaii/San Francisco studies see their results as a call for more transparent and accessible policies addressing conflicts of interest for editors. As The BMJ authors put it, “editors play a crucial role in research integrity; even an appearance of conflict can serve to undermine the clinical research enterprise.”

For now–even though professional organizations like the International Committee for Medical Journal Editors (ICMJE), Committee on Publication Ethics (COPE), and World Association of Medical Editors (WAME) all publish guidelines addressing COI–compliance remains voluntary.

That leaves me wondering: Will medical journals see complete transparency as in their best interest? If not, why?

Many journalists agree that it’s unethical to take gifts or payments that might impact their reporting. Even if they’ve convinced themselves they wouldn’t allow this to happen, ethical journalists recognize the possibility of a subconscious influence as enough of a slippery slope.

Is it too much to ask editors (and publishers) to do the same? And is it too much to ask that we replace the de rigueur “call for transparency” with what we’re really asking for … a call for honesty?

A study published recently in The BMJ addressed a question with surefire media appeal: Does the political affiliation of doctors affect the quality of care that they provide to patients at the end of their lives?

The story was snapped up by news organizations ranging from US News and World Report to the UK Daily Mail. The study was also the subject of a USA Today op-ed by BMJ co-authors Druv Khullar, MD of Cornell University and Anupam Jena, MD, PhD of Harvard Medical School.

Their conclusion was a reassuring one: “Whatever a doctor’s political views, end-of-life care is the same.”

But some experts remain uneasy about the editorial process that produced the BMJ paper. Why? Two out of the four peer reviewers who evaluated the study are close collaborators and (in the case of one reviewer) current business associates of the study authors. Those reviewers, as well as the study authors, all have ties to the health care consulting firm Precision Health Economics.

Such cozy relationships are expressly prohibited by ethical guidelines for peer review, since they may bias the review process and give the appearance of a conflict of interest.  And this is not the only instance where such ties raise questions about the quality of science published in the BMJ. My review of past BMJ studies written by one of the two authors of the current study — Anupam Jena — reveals a troubling pattern: the same close colleagues and business associates have been repeatedly tapped to review his manuscripts. While offering substantive critiques of the science, those colleagues also reliably praise the quality of Jena’s scholarship and appear to recommend that his manuscripts be published with revisions.

“The study is highly innovative, important, and timely,” said Eric Sun, MD, PhD, of Harvard Medical School, in his review of the recently published political affiliations study. Sun is a long-time collaborator of Jena’s and former associate at Precision Health Economics, where Jena consults as a scientific advisor.

The research also garnered praise from Dana Goldman, PhD, of the University of Southern California — another frequent collaborator of Jena’s as well as a founding partner of Precision Health Economics. He called the study “a dispassionate examination of whether affiliation affects performance” and called the methodological approach used by Jena both “clever and appropriate.”

‘Multiple breakdowns in the process’

“This looks really bad,” said Melissa S. Anderson, PhD, a professor of higher education at the University of Minnesota who previously co-chaired the World Conference on Research Integrity. “Why would they want to risk being accused of conflict of interest when [the BMJ peer review process] is open? That amazes me. I don’t know why you’d do that.”

Melissa S. Anderson, PhD

Anderson said that even if these reviewers provided an accurate assessment of the science, the fact that they are close collaborators of the authors casts significant doubt on their conclusions. “If it looks bad, it’s a conflict of interest,” she said. “That actually is becoming the standard for how you determine if something is a conflict of interest. Even the appearance of a conflict constitutes an actual conflict.”

Brian Nosek, PhD, Executive Director of the Center for Open Science, agreed that the situation raises red flags. He noted that peer review guidelines from the Committee on Publication Ethics pointedly forbid this type of scenario. Those guidelines state that “you should not agree to review” if you “are currently employed at the same institution as any of the authors or have been recent (e.g., within the past 3 years) mentors, mentees, close collaborators or joint grant holders.”

“There are strong norms against serving as a peer reviewer of close collaborators and of colleagues at the same institution as you,” Nosek said. “I don’t understand how this norm could have been breached multiple times by the same reviewers so straightforwardly? It suggests multiple breakdowns in the process — why did the journal/editors allow it, why did the reviewer(s) agree to review, are the same people getting asked because they are consistently recommended by the author?”

A troubling pattern

I found many other instances of conflict of interest in the peer review of Jena’s BMJ manuscripts, of which the following is a partial listing:

• John Romley, PhD, an associate at Precison Health Economics and academic collaborator of Jena’s, reviewed the BMJ study titled Physician Age and Outcomes of Hospitalized Elderly Patients in the U.S.: Observational Study. His review praised the study as “careful, thorough and convincing.”  Eric Sun reviewed the same manuscript and commented: “This is an important study and the implications are large.”
• Zirui Song, MD, PhD. an internal medicine physician at Massachusetts General Hospital where Jena also practices, reviewed the BMJ study titled “Do celebrity endorsements matter? An analysis of BRCA gene testing and mastectomy rates following Angelina Jolie’s New York Times editorial.”  (Both Jena and Song are also on faculty in the health policy department at Harvard University, but Song had not yet received his appointment at the time of this review, according to Jena). Song wrote: “The authors do a wonderful job of presenting this study as an interesting and clever policy evaluation.”  Eric Sun reviewed the same manuscript and commented: “This is an innovative paper that fits into the mold of the BMJ Christmas edition. I suspect that it will generate a lot of attention for obvious reasons. The methods are appropriate, the writing is clear, and the topic is of general interest.”
• Darius Lakdawalla, PhD, Chief Scientific Officer at Precision Health Economics and frequent collaborator of Jena’s, reviewed the study titled “Physician spending and subsequent risk of malpractice claims: an observational study,” calling it  “interesting, insightful, and important.”

‘Provocative without much likelihood of helping’

The academic publishing world has been grappling with problems in the peer review system for years. It’s becoming increasingly difficult to find qualified reviewers who are willing and able to devote the time needed for a careful review. Trust has also been frayed by a growing number of peer review scams that involve the authors reviewing their own papers. To be clear, the current BMJ situation doesn’t constitute the same type of “fake” review. The comments of these peer reviewers contain criticism and substantive suggestions for improvement on each manuscript. It is apparent that the reviewers have read the papers and thought carefully about the science behind them.

But in this case, such analysis is always embedded within an overall positive framing that appears to encourage acceptance of the manuscript (BMJ does not ask reviewers to recommend acceptance or rejection — leaving that decision to the editors.) Other reviewers were not as uniformly enthusiastic about these papers.

For example, comments from Carolyn Canfield, a patient reviewer and honorary lecturer at University of British Columbia, were harshly critical of the study linking physician age and mortality outcomes. In her review, Canfield cited a previous study by the same authors that correlated physician gender with patient outcomes. She said these studies can’t draw cause-and-effect conclusions, and yet they tend to generate lots of misleading news coverage:

The article’s publication generated considerable media excitement from blogging professionals and health reporters with headlines such as, “Don’t want to die before your time? Get a female doctor” –USA Today; and “Patients Cared For By Female Doctors Fare Better Than Those Treated By Men” –NPR All Things Considered; and from a Canadian psychology professor “Women physicians are superior doctors according to objective outcomes: mortality.” tweeted by @PaulMinda1 on 19 Dec 2016.

These headlines are unwarranted and unhelpful to the public. If that reception is instructive for this study, notoriety rather than credit is likely to be the true impact factor. Let’s please not blame the public for misinterpreting the evidence. I think that studies such as these are provocative without much likelihood of helping patients or physicians work towards better care.

How did this happen?

In an interview, Jena told me that he understood why some might raise questions about his relationship to the reviewers on these papers, whom he acknowledged nominating. However, he said that critics should look at the actual reviews before concluding that there was bias in the process.

“You can’t just assert that someone has a conflict of interest,” Jena said. “You’ve got to look at the content.”

Anupam Jena, MD, PhD

He acknowledged that he would not nominate peer reviewers whom he thought were likely to be critical of his manuscript, but said that he always suggested people who were health policy experts and qualified to evaluate his methods and data. “I hope that people would take the time to look at the reviews and analyze whether those reviews seem reasonable. There are multiple reviews on these papers and my instinct would be that there is concordance in the reviews. My guess is that someone like Dana [Goldman] writes serious reviews.”

“I think at the end of the day, what irks me is that it’s simply not scientifically fair to say that someone has a conflict of interest or is biased if they haven’t looked at the evidence.”

He also downplayed concerns that he failed to disclose his relationship to these peer reviewers to the BMJ. “If you were to ask them, ‘What do you do when someone suggests names for peer review?’ I think any editor would say that we look at those names and we know that they won’t suggest people who are likely to be critical of the manuscript. They will pick people who are content experts.”

BMJ’s response

Elizabether Loder, MD, a BMJ editor and associate professor of neurology at Harvard Medical School, said that finding qualified peer reviewers is often a problem, especially in smaller research fields. In the case of the political affiliations study, the journal asked seven reviewers to look at the manuscript and only three agreed to do so; all three were reviewers that the authors had nominated in their submission. She said that while the journal always tries to avoid selecting only author-nominated reviewers, “despite our best attempts to get a wide range of reviewers it’s doesn’t always work out that way.”

Elizabeth Loder, MD

She noted, however, that the manuscript was also evaluated by eight BMJ editors and received two rounds of review from an independent statistician. “Each editor made notes with thoughts, many were heavy-hitting and quite critical,” Loder said. “The idea that favorable reviews alone can get a manuscript accepted isn’t accurate. I know from experience that at some smaller journals, reviewer comments play a very strong role in determining whether a manuscript is accepted, but that’s not true of the BMJ process.”

What about the general failure of all all parties to declare their conflict of interest in this matter?

Loder said, “We do ask people to disclose conflicts of interest, and we ask that they think very broadly about what might constitute a conflict. Having said that, it can be very challenging. Financial conflict of interest is very easy to trace, but knowing someone, especially when you’re in a small field and using techniques that no one else can give an expert review on, that’s more difficult. At what point should those things be disclosed? I think I’m genuinely confused myself on that point.”

But Jocalyn Clark, PhD, an executive editor at The Lancet, wrote in an email that the failure to disclose these relationships was a relatively black-and-white ethical lapse. “In my view, the reviewers with previous co-authorship with the Jena author (I note he is first author, so hard to miss when reviewing the paper) and advisory/consultancy/employment roles at the same company (PHE) should not have been selected as peer reviewers,” she said. “The editors may not have known the reviewers they invited were conflicted; the reviewers should have declined the invitation when they received it (reviewer invitations generally have at least the title, author list, and abstract) or even if they accepted the invitation and then had access to the full paper, should have informed the editors they needed to recuse themselves due to a relationship with the author.”

She added, “If your assessment of the reviewers having a prior collegial/co-authorship relationship with the author is true, this is very troubling that the reviewers did not declare – it is effectively them being dishonest and subverting the integrity of the peer review process.”

[Clark disclosed that she is a former editor at BMJ (2002-7) and knows many editors there.]

Broader questions

We only know about this situation because BMJ, unlike most academic journals, has an open and transparent peer review system that invites this type of scrutiny. Loder said the whole idea is to generate constructive criticism that leads to improvement. The journal “is sensitive to the perception that there was a conflict and we’ll aim to do better,” she said.

But what about other journals with less transparency about their peer review process? Could the same thing be happening? And could the implications of such practices elsewhere have bigger stakes for US health care policy?

One can speculate that they might. Jena and his Precision Health Economics colleagues consult for numerous clients in the pharmaceutical industry. And their academic papers and related op-eds typically advocate positions that align with those of the drug industry — for example claiming that expensive new cholesterol drugs will save the health care system up to $5 trillion over the course of 20 years, or that the value of expensive new cancer drugs exceeds their costs, or that pharma profits from expensive new drugs are in line with profits in other industries.

Is it possible that these types of papers, which influence the discussion on drug prices in the U.S., are getting similar friendly treatment during the review process by Precision Health Economics associates? Should editors at other journals who’ve published such papers go back and investigate the peer review that these papers were subjected to?

Jena said that he publishes infrequently on pharmaceutical policy, in part because he’s sensitive to the appearance of conflict that this creates. He said that he couldn’t think of any recent papers where this type of conflict could have been an issue in the peer review process.

But then again, Jena isn’t the only researcher who hasn’t called attention to his conflicts of interest during the peer review process.

“We simply wouldn’t know if this was happening at another journal [that doesn’t have an open peer review process],” said Anderson, “which is why it’s even more incumbent on [journals] to safeguard their peer review system and keep it free of conflicts of interest. The system is based on trust, and if we can’t trust [the journals] then their articles will be seen as suspect.”

Last week we reported on ‘One cancer patient’s dramatic response to immunotherapy…’ and highlighted what we thought was a lack of healthy skepticism in the extensive (and mostly fawning) news coverage.

Most importantly we wanted to show that by highlighting the dramatic response of a single patient — without cautioning readers that just one dramatic response by no means justifies using words like “miraculous” or “unprecedented” — some reporters were running the very real risk of giving people false hope, or misleading them.”

“But the problem here is that this single patient is actually part of a larger clinical trial,” said Vinay Prasad, MD, a cancer specialist at Oregon Health and Science University.

“So this one amazing outcome is picked out of dozens or hundreds cases in the trial … we have no way of knowing. Yet in the reporting form to the journal — which is designed by them to address increasing problems with transparency and reproducibility — the authors identify this as a ‘single case report’ and that ‘no data was excluded’. How can that be? Is the denominator 1 or is it the 332 people enrolled in the trial?”

And you can see that confusion regarding the numbers in our original reporting:

• “Perkins (the patient with the dramatic response) was just one of three breast cancer patients in this Phase II clinical trial. One subject died of an infection and the other did not respond” [source: CBS news]
• “NPR  reported amongst 45 total patients in the trial with a variety of advanced cancers … there were 7 responders” (15%)

Here is the clinical trial Prasad refers to: (NCT01174121).  It clearly lists 332 participants, and Ms. Perkins is just one of them.

And here is the required Reporting Summary (completed by the author) in Nature Medicine:

Other important ways this matters

You can see how this might have a major effect on news coverage. At the very least, one can’t help but wonder how the reporting might have changed if it had been made crystal clear to reporters that Ms. Perkins was 1 of 332 subjects, and not simply 1 of 3 breast cancer patients (as reported by CBS), or 1 out of 45 patients (as reported by NPR)?

Does 1 of 332 lend itself to more caution? Fewer hyperbolic/eye-catching headlines?

I think it might. And Prasad agrees:

“Once I started looking for news stories on this I quickly found about 10 stories that all focused on the one amazing outcome. No mention of other subjects or other outcomes. That starts with the authors and the journal, and it’s unethical because there’s no transparency.”

That raises the issue of appropriate journal publication practices. When we approached Nature Medicine for explanation we were told: “It’s our policy to refer scientific questions to the author.”

Really? When your form is designed to improve “reproducibility” and encourage “consistency and transparency.” Doesn’t the journal have some accountability here?

We did try to reach out to the primary author, but two inquiries went unanswered.

Why we need watchdogs

What’s sobering here is that I missed this nuance. And I’m trained to look for it. And Dr. Prasad was the only cancer specialist (that I know of) who chose to make a point of this discrepancy on social media. Makes you wonder, doesn’t it, how often in this hyper-competitive world of medical research — where publications and news coverage can make or break a career, and hyperbolic headlines routinely trump careful, investigative reporting — we’re being misled by incomplete information?

It reminds me of two things we don’t say nearly enough; maybe because they seem trite or self-evident. First, if a news story seems too good to be true, ask yourself why. Dig deeper. Second, no matter how reputable the academic institution (as we reported earlier this week), or how reputable the journal (as we reported last month), we still need to remain vigilant. We still need watchdogs.

Houston Chronicle reporter Craig Hlavaty opens a vein.

Houston Chronicle reporter Craig Hlavaty recently treated readers to a first-person account of getting an intravenous (IV) vitamin infusion inside a van parked outside his house.

The article, “Feeling the drip, drip, drip of the mobile IV craze,” related how a needle was inserted into his arm, “just where a tattooed lightning bolt strikes.”

Hlavaty extolled the cool rush of liquid into his veins:

After a few minutes a great euphoria hits and my entire body feels at ease. I have a desire to hear early period Neil Young in an almost post-orgasmic haze. It’s at this point I remark on how plush the seats in the van are.

Mildly entertaining, perhaps. But is it good journalism?

The article didn’t probe much into whether these $179 infusions can help people or cause them harm.

It did parrot the infusion company’s unsupported marketing claims about helping everything from hangovers to cancer.

The piece departed from the Chronicle’s history of strong health care journalism, recently exemplified by an investigation with ProPublica of quality issues in the Baylor St. Luke’s Medical Center heart program.

“To me this reads like an advertisement, something I would not expect to see in the Houston Chronicle,” said Ruth SoRelle, a retired medical writer who spent two decades reporting health and science stories at the paper.

Our publisher, Gary Schwitzer, wrote about the downsides of first-person reporting on health interventions, which often have a favorable tilt and might —  as Hamilton Nolan wrote on Gawker — cause “stories from the wider world” to go untold.

Feeling like Nicholas Cage

In this case, the reporting betrayed nary a hint of skepticism.

Hlavaty gushed that the mobile IV business is “part of a health trend that’s been used by celebrities, cancer patients and people just wanting to kill their hangovers via the influx of vitamins.”

He observed that as he stepped out of the van “the trees are greener, the early evening air is cooler and my feet almost bounce in running shoes. I feel like that Nicolas Cage GIF from ‘Con Air’ when he steps off the prison bus, with the wind blowing hair back and a close-eyed smile appreciating the moment.”

To his credit, Hlavaty did interview a dietitian (erroneously referred to as a doctor), who provided mild caveats such as “studies are still out on treatments like this.”

But he pooh-poohed the view that healthy people can get sufficient nutrition from food, asking “what’s the fun in that doc?” and quoting the owner of the mobile IV business laughably asserting that “it would have to be a full-time job prepping, supplementing, eating and drinking.”

‘Really irresponsible reporting’

Some HealthNewsReview.org contributors expressed dismay via email that a news organization would put precious editorial resources into promoting an unproven product.

“Overall, I think this is really irresponsible reporting,” said University of Florida journalism professor Kim Walsh-Childers, PhD, who criticized the “snarky approach to a serious health topic.”.

“I would argue that it’s ethically questionable for a newspaper, in essence, to encourage people to substitute unproven IV injections of anything as a way of compensating for poor diet, overuse of alcohol and lack of adequate sleep,” she said.

The old vitamin hoax

While Hlavaty portrayed IV vitamins as trendy, they’re in fact an “old hoax,” said Mayo Clinic Health System internist Ed Ward, MD.

“There is no scientific evidence IV vitamins benefit anyone (other than the seller of the vitamins). Like other alternative-medicine/nutrition/snake-oil scams they are popular simply because of placebo effects and marketing,” Ward said.

He pointed to a 2013 review of the evidence on the web site Science-Based Medicine, which called vitamin infusions “health care theater” with no medical justification.

While the story reported the infusion company official’s claim that infusions are a “prevention” tool, Kaiser Health News recently reported there’s no conclusive evidence that dietary supplements prevent chronic diseases.

The story mentions “preliminary studies are showing that these treatments can be effective for people that have sepsis, a serious blood infection,” but sepsis is generally seen in hospitalized patients. You can check out our coverage of the evidence behind using Vitamin C infusions for sepsis.

An expensive euphoria

Unexplored were any potential harms, such as sick people avoiding appropriate treatment and well people believing that infusions can negate their unhealthy behaviors.

The safety of chugging massive quantifies of supplements isn’t always clear.

As Kaiser reported, preliminary positive studies can fuel “irrational exuberance” about possible benefits, leading people to take supplements for years until more rigorous research shows they do no good, or might do harm. For example, beta carotene has been linked to greater lung cancer risk, and vitamin E may increase the risk of prostate cancer.

University of Chicago internist Adam Cifu, MD, said IVs themselves carry a small risk of mild side effects such as a local infections, bleeding, and a superficial blood clot in a vein, and a “very small risk” of bad side effects such as bacteria in the blood or an allergic reaction.

As for the purported buzz, Dan Mayer, MD, a retired professor of emergency medicine at Albany Medical College, suggested the anti-nausea drug Zoran in the infusion could cause central nervous system effects that might be misinterpreted as euphoria. He said a liter of fluid can make a somewhat dehydrated person feel better, “maybe even a bit ‘euphoric.'”

Euphoria is subjective, and there are cheaper ways to get it, said Cifu: “I get euphoric eating a good plate of pasta.”

‘It’s not about us’

SoRelle said as a journalist she turned down offers of free procedures — such as an MRI — on ethical grounds. “It would be like being the food writer and taking free food,” she said.

But first-person reporting also isn’t a substitute for evidence. While some people might enjoy a more personal and conversation style, Walsh-Childers said she’s no fan unless a journalist has a unique story.

“In other words, if something happens to the journalist that no one else experienced or would have been likely to experience, then sure, tell that story. But if it’s something other people are experiencing, I prefer for journalists to stay the heck out of the story. It’s not about us – it’s about the public,” she said.

Take a guess where these headlines come from:

Parkinsonism can be cured

Therapeutic use of intermittent fasting for people with Type2 diabetes as an alternative to insulin

Although the language wouldn’t be out of place in a supermarket tabloid, these headlines are actually from The BMJ Case Reports journal; more specifically, from a collection labeled “Myths Exploded.” 

Bear in mind this journal has published over 15,000 case reports — what they dub “the single, largest repository of case reports in the world.”

So it’s worth asking: can myths in medicine be “exploded” by case reports? And what does that even mean?

Furthermore, is it responsible to suggest such anecdotes actually debunk myths, and then turn around and promote that erroneous notion to a much bigger audience via news releases?

The response from BMJ Case Reports

Dr. Seema Biswas

“The ‘Myths Exploded’ category was originally intended for authors rather than readers,” says Dr. Seema Biswas, Editor-in-Chief of BMJ Case Reports. “ It was to encourage reporting cases that may challenge conventional approaches and stimulate further research.” She added:

“Case reports are ideal for providing unique clinical details, but they shouldn’t be regarded as evidence for changing clinical practice. So I do take your point. Considering the expanding search and uptake of available information by the broader public not accustomed to levels of evidence of clinical data, I accept that this label [‘Myths Exploded’] may be counter-productive and we will be reviewing the use of this category by the end of the year.”

Let’s be clear: We’re not disparaging the value of case reports. Biswas is right to point out they can inspire and guide new hypotheses and avenues of research.

But the headlines above are based on cases of 1 and 3 subjects, respectively. They do not have the statistical power to debunk (or prove) myths. But when they are promoted by a major publisher with a global circulation, they do have the power to propagate myths.

Cures and reversals based on single cases?

Although not recent (originally published in 2013), the first case about “Parkinsonism” is a good example of “the words matter.” The 67-year-old subject of the study most likely had Parkinson’s-like symptoms from a “vasculitis/vasculopathy affecting [her] basal ganglia” (ie. inflammation of the blood vessels supplying the part of the brain associated with Parkinson’s disease). So in one sense, the headline is partially correct: the treatment she got (for another disease), improved her Parkinsonian-like symptoms (aka “Parkinsonism”).

But can readers be expected to differentiate a “cure” for Parkinsonism from a cure for what most people know as “Parkinson’s Disease”? 

What is the myth here? Is it that Parkinson’s disease can’t be cured? That isn’t a myth. It can NOT be cured. This woman most likely didn’t have Parkinson’s disease. Her Parkinsonism was caused by something else, and that’s what went into remission. Why even dangle the word cure if it could be misconstrued?

Fortunately, from what we could see, this “Myth Exploded” report did not result in misleading news coverage.

But that’s not the case with the second study of 3 men with diabetes who went off their insulin after 10 months of intermittent fasting. We wrote about that last week.

The case report, promoted to journalists and the public by this news release, led to erroneous news coverage strongly suggesting that fasting could reverse type 2 diabetes. The emphasis was clear: reversal. But this case report cannot prove reversal. Likewise it can’t prove or refute that fasting is a safe, sustainable, or effective treatment for Type 2 diabetes. Nor can it debunk any myths … which are what?  That diabetes can’t be reversed? That fasting can be therapeutic? Again, it’s unclear what myth got “exploded.”

Case reports as entertainment?

From The Telegraph’s ‘Don’t Hold in a Sneeze’

There’s a broader issue here that goes beyond the “exploding myths” case reports and applies to case reports in general. That is, as Biswas points out, the fact that more people are searching for (and finding) case reports who may or may not know they’re more anecdotal than they are vetted scientific evidence.

What should we expect the general public to do with news releases like these from BMJ Case Reports?

Dental brace wire found in woman’s bowel after 10 years

Cold open water plunge offers instant pain relief

Man develops severe ‘thunderclap’ headaches after eating world’s hottest chilli pepper

Don’t hold your nose and close your mouth when you sneeze, doctors warn

If case reports ≠ evidence for changing medical practice, then what’s the goal here? Entertainment? If so, it’s not harmless entertainment because news organizations latch on to these quirky anecdotes and pass them along to the public as some bizarre mix of medical curios and medical advice. Consider these news stories based on the releases above (presented in the same order):

• The New York Post opted to scare people that swallowing objects could lead to twisted intestines (volvulus).
• Time wrote: “given the impressive results seen in the case study, cold-water swimming may be worthy of further study for pain.”
• Does NBC News think we should avoid peppers because “the pepper-eater wasn’t suffering from a stroke, but a major artery in his brain had narrowed.”
• Here’s the headline from The Telegraph: ‘Don’t hold in a sneeze, warn doctors. It could be the death of you.”

All these headlines were generated by the cases reports of one individual. And all these cases reports were promoted via news releases to journalists and the general public. They potentially reached thousands or millions of people.

Who benefits from this?

At issue here is something quite important. If the primary benefit of case reports is that they highlight issues that may lead to further research, then their primary audience should be researchers.

Because they are purely anecdotal, and do not represent strong scientific evidence, they should not be disseminated to a “broader public not accustomed to levels of evidence of clinical data” unless it’s made crystal clear:

Case reports do not equal evidence that should be acted upon. They’re simply anecdotes. For these two reasons, people should not base health decisions on them.

Health care is complex, but so much of its excellence and effectiveness comes from simplicity.

Our 5-star selections this week are good examples of this.

Our first story features a world leader in cancer who believes in simple and straightforward communication of risk, but challenges the prevailing notion that cancer screening is a “simple” and obvious choice.

The second story shows how very simple and easily avoided breakdowns in emergency services can have very complex and dire consequences.

And the final story take us behind the scenes of medical publishing to reveal longstanding problems that should have simple solutions, but somehow remain unaddressed.

It’s 5-Star Friday – enjoy!

Gary Schwitzer, Publisher

Gary Schwitzer | Founder & Publisher

Cancer Society Executive Resigns Amid Upset Over Corporate Partnerships • by Sheila Kaplan • The New York Times

By drawing attention to this article, I am not focusing on the journalism, but on the man who is the topic of the story.

Otis Brawley, MD, recently resigned as Chief Medical Officer of the American Cancer Society (ACS). The Times reported:

His departure was largely attributed to his dismay over some commercial partnerships, including with Herbalife International, the controversial supplements company, people close to him said.

While he would not comment publicly, others said that he had become uncomfortable with the society’s growing reliance on donations from businesses with questionable health credentials that he and others suspect are seeking to burnish their images.

Conflicts of interest in health care, including conflicted commercial partnerships that some health care nonprofit organizations enter into, have been a recurrent theme on our website. So Brawley’s decision – and what’s behind it – is worthy of attention.

He will be missed. Behind his leadership, the ACS was no longer the old ACS with the slogan, “Fight cancer with a checkup and a check.” He questioned some of the checkups and some of the checks being written.

He promoted a balanced discussion of the tradeoffs involved in cancer screening decisions, educating people that “simple” screening tests can, indeed, cause harm. This is evident in the podcast discussion I had with him.

In this video he stated his concerns about some prostate cancer screening promotions:

“There’s a lot of publicity out there – some of it by people who want to make money by recruiting patients – that oversimplifies this – that says that ‘prostate cancer screening clearly saves lives.’ That is a lie. We don’t know that for sure…

…We’re very concerned about a number of clinics that are offering mass screening where informed decision making – where a man gets told the truth about screening and is allowed without pressure to make a decision – that’s not happening. Many of these free screening things, by the way, are designed more to get patients for hospitals and clinics and doctors than they are to benefit the patients. That’s a huge ethical issue that needs to be addressed.

We’re not against prostate cancer screening. We’re against a man being duped and deceived into getting prostate cancer screening.”

He probably did not endear himself to some special interests when he spoke his mind telling journalists, “People in America may not live longer but we sure do a better job taking pictures (scans) of them dying.”

It’s unclear where he’s headed next. And it’s unclear what his departure means for the future of the American Cancer Society. The first will be interesting to follow. The second may be very disappointing.

His voice is vital in the health care and health policy discussions of our country – and beyond. After the announcement, people on Twitter referred to him as “ethical….principled…always willing to speak truth to power….we need more people with this level of integrity.”

Jill U. Adams | Associate Editor

Losing Laura • by Peter DeMarco • The Boston Globe

Jill U. Adams

This is a heart-wrenching piece about a woman who died of an asthma attack while just outside an ER department. Written by her husband, this long-form narrative delivers minute-by-minute detail to reveal multiple breakdowns in the emergency response systems – poor signage at the hospital, inaccurate phone GPS tracking, consolidation of 911 call centers, and good old human inertia.

If any one of these obstacles had been cleared, in a way that we all hope would happen should it be our own family members in crisis, Laura Levis might have recovered from her perfectly treatable asthma attack. Which leaves the writer in yet another pickle:

And it is the story of how there will be no justice through our legal system for what happened to Laura, as public hospitals in Massachusetts, and throughout most of America, are largely protected by state laws against malpractice and negligence claims, leaving thousands who rely on such institutions little recourse when harmed or lied to.

Michael Joyce | Writer-Producer

Peer Review: The Worst Way to Judge Research, Except for All the Others • by Aaron E. Carroll • for The New York Times

Michael Joyce

It seems “The Upshot” at the New York Times has caught on that Aaron E. Carroll, a pediatrician and health care blogger from Indiana, has a knack for pulling back the curtain on important goings on backstage in medicine.

In this case, the fallibilities of peer review, which is the process by which medical experts decide what does and doesn’t get published in medical journals.

What’s behind the curtain? Intransigent bias, trendy topics, a lack of women, and reviewers who are rarely trained or paid for what they do — in the case of the latter, an estimated bargain savings of over $3 billion in 2008.

Perhaps the most interesting part of the article comes toward the end when Carroll — himself an editor at a major pediatric journal — offers up his suggested remedies. It’s sobering how self-evident they are, and disturbing how they’ve managed to go mostly unaddressed for decades.

Please Note: These stories above have not been subject to our rigorous, 10-criteria systematic review for accuracy, balance, and completeness. Rather, they represent pieces of health care journalism and opinion writing that members of our staff found compelling and wanted to share with others.

However, our reviewers did give 5 stars to two Associated Press stories over the past month:

• AP offers strong reporting about the evidence for a drug treatment for moderate bone loss
• Thoughtful and thorough, AP story looks at growing trend of using ketamine for depression