Plagiarism and advertising and COI, oh my!

Update #4, 7:45 AM Eastern, Sunday, June 17 (Happy Father's Day, everyone!)
As of this morning, the HealthWorks Collective has taken down the story as well. What is interesting to me is that neither OneMedPlace nor HealthWork Collective has put any explanation on their respective site, and the reader is essentially consigned to finding "ERROR 404." I sure hope that this is not either of the organization's attempt to sweep the whole thing under the rug. 


Update #3, 6:00 PM Eastern (and last for tonight, I hope)
Another e-mail from Matt Margolis, in which he requested that I let my readers know that 

...we took down our piece after an internal discussion, before you and I made any contact. Hence my request to remove a reference to us.

Still no answer on Aviisha -- perhaps it will appear in the "similar piece" they are planning to publish next week. looking forward to it. 


Update #2, 4:35 PM Eastern
Another exiting update for y'all. A few hours ago I got a message from a Matt Margolis at OneMedPlace informing me that the company has taken the post down after realizing their mistake. Well, why don't I just share the whole message (emphasis mine)?

Hello Marya,

Thank you for reaching out to us. We quickly realized there was an error in attribution and have since pulled the story. We would appreciate at this time that you do not include our name or our article in your post. However, we will be publishing a similar piece next week that will incorporate some of the facts in the NYT story. At which time, I am happy to answer any questions to help give depth to your piece.

Best,

Matt Margolis

Managing Editor, OneMedPlace

I responded asking for "more depth" with respect to whether Aviisha is a client of OneMedPlace. I will let you know what I hear when I hear it. And by the way, the HealthWorks Collective still has the story on its page. 


Update #1, 1:45 PM Eastern
As of right now, the OneMedPlace story page has been taken down. No one from OneMedPlace has communicated with me at this point. The story is still up on the HealthWorks Collective site here. 

About four years ago I decided that it was time to learn more about the recent abundant advances in brain science. Since then, I have read avidly on our neurobiology, behavioral economics and decision science. I have learned about our predictable irrationality, biophilia, heuristics and biases, and our drive to create linear explanations for phenomena where none exists. I also learned about priming, where subtle messages delivered prior to a task's completion (did you know that you can, for example, get kids to improve more on their exams by commending their hard work than their native brilliance?) influence the outcome of the task.

It is in this context of (some) understanding about how the human brain assembles its information pathways that I read this story from yesterday's OneMedPlace News (also reprinted by The HealthWorks Collective here under the byline of Herina Ayot, the Managing Editor for OneMedPlace). This story about a correlation between severe sleep apnea and cancer, starts out thusly:

Two new studies have found that people with sleep apnea, a common disorder that causes snoring, fatigue and dangerous pauses in breathing at night, have a higher risk of cancer. The new research marks the first time that sleep apnea has been linked to cancer in humans.

About 28 million Americans have some form of sleep apnea, though many cases go undiagnosed.

[...] For sleep doctors, the condition is a top concern because it deprives the body of oxygen at night and often coincides with cardiovascular disease, obesity, and diabetes.

All of this is true and truly concerning. The next two paragraphs state

In light of the recent studies, Aviisha Medical Institute, LLC is taking $200 off the cost of its home sleep test, which was originally $449.49, and offering free assessments for the duration of May. The special offer is intended to encourage the public to get tested for sleep apnea and raise awareness about the deadly consequences of untreated apnea. Studies estimate that 85% of sleep apnea sufferers don’t know they have the condition.

One may speculate that other diagnostic technologies developers may promote offers in light of this newfound cancer correlation, as well.

This is when I got a little uncomfortable thinking that this is an advertisement rather than a story. And the final statement really got my hackles up:

Although the study did not look for it, study author Dr. Miguel Angel Martinez-Garcia, of La Fe University and Polytechnic Hospital in Spain, speculated that treatments for sleep apnea like continuous positive airway pressure, or CPAP, which keeps the airways open at night, might reduce the association.

And how does sleep apnea cause cancer?

Lead author Dr. F. Javier Nieto, chair of the Department of Population Health Sciences at the University of Wisconsin School of Medicine and Public Health, commented that five times the risk of cancer is more than just a statistical anomaly. Previous studies in animals have shown similar results, while other studies have linked cancer to possible lack of oxygen or anaerobic cell activity over long periods of time, therefore, it’s possible poor breathing fails to oxygenate the cells sufficiently. 

But then even more happened. From the very beginning of the article, I had sensed something familiar in it. It was my recollection that I had seen this story before about the two studies presented at the American Thoracic Society last month. Dutifully clicking on the link provided in the first paragraph of Ayot's story, I found myself on the NYT's "Well" blog reading the post from May 20, 2012, by Anahad O'Connor. Here is how it starts:

Two new studies have found that people with sleep apnea, a common disorder that causes snoring, fatigue and dangerous pauses in breathing at night, have a higher risk of cancer. The new research marks the first time that sleep apnea has been linked to cancer in humans.

About 28 million Americans have some form of sleep apnea, though many cases go undiagnosed. For sleep doctors, the condition is a top concern because it deprives the body of oxygen at night and often coincides with cardiovascular disease, obesity and diabetes.

And then, disappointingly, toward the end of the post:

Although the study did not look for it, Dr. Martinez-Garcia speculated that treatments for sleep apnea like continuous positive airway pressure, or CPAP, which keeps the airways open at night, might reduce the association.

A couple of things shocked me (in addition to the final statement about CPAP):
1). Ayot's story was almost verbatim (with the exception of the Aviisha advertisement) reprinted from O'Connor's story. There did not seem to be an attribution, unless linking the the original post counts as one. Please, someone who is well versed in this, tell me if this is an acceptable way to attribute. I'll tell you now that in the academic circles this would be (and has been) called plagiarism. As you may recall, I am pretty sensitive to this, having had my work plagiarized recently.
2). The thinly veiled advertisement (inserted into the body of this story which is practically copied from the NYT word for word). The advertisement would not bother me if it had stayed on the OneMedPlace web site -- after all they seem to be a PR agency. But is was reprinted on the HealthWorks Collective's site as a legitimate news item, and I don't believe that HWC is a purveyor of advertorials.

I browsed the web site of Ayot's employer OneMedPlace to see if there is evidence that Aviisha is a client, but did not find any, though my search was admittedly perfunctory. I have reached out to the company for a comment and to understand whether a conflict of interest may exist with Aviisha, but have not heard from them at this time. I will update the post if and when I hear from them.

So drawing on my limited understanding of how the brain works, here is what I am thinking this piece aims to accomplish:
1). Create an awareness of a condition that is apparently common and largely undiagnosed, and do it using words from a high-impact publication
2). Prime the reader with the idea that we understand how it causes cancer (if only in laboratory animals, maybe)
3). Set up Aviisha (and "other diagnostic technology developers") as solution providers
4). Create a linear path to CPAP as the answer

But this is just my uneducated guess at how the human brain may perceive this story. Of course, I could just be playing right into my cognitive biases.   

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A FORCE against disease mongering

Have you been over to The Oransky Journal lately? If not, go and see what is happening there. What is happening is a microcosm of the larger debate we are having about detection and diagnosis of real disease versus overdiagnosis of phantom conditions whose treatment is worse than anything that the potential disease may deliver.

The issue is as follows. In his talk at TEDMED in April, Ivan gave an excellent and measured presentation about the folly of pre-disease classifications and the harm they can bring. As my readers are well aware, this is the subject of great interest to me -- after all, it is a travesty that contact with the so-called "healthcare" system is the third leading cause of death in the US, and that overtreatment costs us at least 10 cents of each healthcare dollar, and probably much more (you will find a slice of my posts on this issue here). So, Ivan's talk was timely and cogent.

After he posted the talk on his blog, he received a letter from a group called FORCE (Facing Our Risk of Cancer Empowered) who, as it turns out, coined the word "previvor," one of the many words Ivan used to illustrate the philosophy of disease mongering. The letter voiced a vigorous objection to Ivan's use of the word to "misunderstanding" its meaning. But what really happened?

Apparently, "previvor" defines a group of people who are at a heightened risk for cancer, but have not yet been diagnosed. It seems that the majority of FORCE's constituency consists of women with the BRCA gene mutations, which put them at an extraordinarily high risk of several cancers, most notably breast and ovarian. Moreover, these cancers tend to occur at an early age, and are generally quite a bit more aggressive than those not associated with these mutations. We are not talking a trivial rise in the risk either; BRCA1, for example, raises one's lifetime risk for breast cancer to about 80%! To mitigate this risk, many women with these types of mutations undergo prophylactic mastectomies and oophorectomies. These are life-changing events, and their genetic make-up hangs like a Damocles' sword over the offspring of these women as well. So, what's the problem with using whatever word suits them?

The issue is the group's definition of this neologism "previvor." As quoted in Oransky's post (italics mine):

“Cancer previvors” are individuals who are survivors of a predisposition to cancer but who haven’t had the disease. This group includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor. The cancer previvor term evolved from a challenge on the FORCE main message board by Jordan, a website regular, who posted, “I need a label!” As a result, the term cancer previvor was chosen to identify those living with risk. The term specifically applies to the portion of our community which has its own unique needs and concerns separate from the general population, but different from those already diagnosed with cancer.

So, the definition is quite broad, as you can see, especially the "some other predisposing factor." Who doesn't have one? Just by virtue of being alive we have predisposing factors to many diseases, including cancer. And aging is one of the strongest predisposing factors to cancer as well. The concern is that a broadly defined term like this plays right into our national paranoia about our health and our enthusiasm for screening as the primary mode of prevention. And if you really don't feel well informed about why screening is not all it's cracked up to be, I urge you to dig through the annals of this site thoroughly (if you don't have much time, you can get a solid primer on the issue from my book). In my view, given the extent of the harm from overdiagnosis and overtreatment, Oransky's call-out of this word in the ultra-visible forum of TEDMED was a public service.

And indeed, it turned out this public service has gone well beyond just delivering the information. The discussion that ensued over the last couple of days with FORCE has shown what this organization is made of. An 80% lifetime risk of breast cancer is a grave matter, and the group is an important force in advocating for these patients and supporting their families. But as it turns out, it stands for even more than that. I commend Dr. Friedman, the Executive Director of the group, for being open to narrowing the definition of the term "previvor." This willingness signifies a real desire to do the right thing not only for her constituency, but also for the public at large. Even more, she should be proud that her organization is taking a stand against disease mongering.

If you like Healthcare, etc., please consider a donation (button in the right margin) to support development of this content. But just to be clear, it is not tax-deductible, as we do not have a non-profit status. Thank you for your support!

Astroturfing diseases

One of the top hits that comes up on the Oracle of Googlius for "astroturf" is for the original company, now renamed SYNLawn, but still proudly stating "We invented synthetic grass", which is what astroturf is. More recently, this already synthetic term has become a verb, as in "astroturfing". My favorite of all credible information sources on the web, Wikipedia, has this to say about it:

Astroturfing denotes political, advertising, or public relations campaigns that are formally planned by an organization, but are disguised as spontaneous, popular "grassroots" behavior. The term refers to AstroTurf, a brand of synthetic carpeting designed to look like natural grass.

I think the readers will recognize a lot of the fabricated causes taking front and center place in today's political landscape as qualifying for rovian astroturfing. In fact, you would have to be living under a dense rock to have missed this recent New Yorker article by Jane Mayer about the manufacturing of the Tea Party by the billionaire Koch brothers. A perfect example of astroturfing, if you ask me.

But what about diseases? Can there be astroturfed diseases? Is it possible that some of the 40% of Americans who have at least one chronic disease are suffering from an astroturfed disease? And is it possible that there are more astroturfed diseases cropping up every day? How can this be? That would be some futuristic dystopia, nothing to do with our reality. Well, bear with me, and see what you think.

A friend recently blogged about something called "hypoactive sexual desire disorder", affectionally abbreviated as HSDD, lending it that much more medical gravitas, as abbreviations are apt to do. Turning once again to my favorite source of information, here is how it is defined:

Hypoactive sexual desire disorder (HSDD), is considered as a sexual dysfunction and is listed under the Sexual and Gender Identity Disorders of the DSM-IV.^[1] It was first included in the DSM-III under the name Inhibited Sexual Desire Disorder^[2], but the name was changed in the DSM-III-R.

Aha, so it is a DSM-IV defined disorder. Let's see who qualifies (thanks to my friend who is a psychiatrist for this):

A. Persistently or recurrently deficient (or absent) sexual fantasies and desire for sexual activity. The judgment of deficiency or absence is made by the clinician, taking into account factors that affect sexual functioning, such as age and the context of the person's life. 

B. The disturbance causes marked distress or interpersonal difficulty.

C. Sexual dysfunction is not better accounted for by another Axis I disorder and is not due exclusively to the direct physiological effect of a substance (drug of abuse or medication) or a general medical condition (like age).

I especially love the substituted judgment here: "The judgment of deficiency or absence is made by the clinician..." So, ladies, do not try this at home -- these people are professionals.

Being that research methodologies are in my blood, I cannot help wanting more precision in order to define the condition. When precision is lacking, as in this "diagnosis", misclassification becomes a big problem. This, of course, can go either way (that is in favor of diagnosing or away from diagnosing) when the clinician has no preconceived notions about the population, the specific patient, the condition or its treatment. But how often does that happen? All of us walk around with many a preconceived notion, most concealed at the subconscious level, and we make our decisions based on those. And the insidious part is that these preconceptions in medicine can be hijacked by unethical marketing practices. Remember this story in the New York Times last week, which brilliantly described the arc of manufacturing the market for antipsychotics? Do you think that it is possible for a sales rep to increase the misclassification of HSDD in favor of more non-cases being called cases, so that they can "benefit" from treatment? You bet. My point is that, even if the syndrome is real in a small fraction of the population, the less precisely defined it is, the easier it is to grow the market by classifying even marginal or non-existent cases as disease.

But of course we should not single out psychiatry here. Even in areas with "hard" data, like cardiovascular disease, the thresholds for such quantifiable risk factors as cholesterol and blood pressure keep drifting downward with every new iteration of "evidence-based" guidelines, to the point where we now are coming up with pre-disease nosologies, such as pre-hypertension, pre-diabetes, etc. Whether these pre-diseases result in actual clinical syndromes is quite open to debate, as we are seeing even in the mammography and osteopenia debates. So, even when we complacently refer to precise and objective measures of disease definition vigilance and skepticism are required. However, from the perspective of generating markets, the earlier the disease is defined, the larger the market potential. Thus, misclassification becomes a market strategy. And harms to public's health increase.

So, is the phenomenon of astroturfing diseases real? You decide. For someone who spends her life worrying about critical illness, it is an absurd, albeit too real, idea. For someone walking in the street who yesterday was healthy but today carries a pseudodiagnosis, astroturfing is all too real. For some unethical manufacturers and clinicians, the proof is in their all too real income. For the rest of the society, we reap what they sow by paying an enormous, and very real, price in human lives, happiness and dollars.

Just as in politics, in healthcare astroturfing represents Orwellian dystopia. We as clinicians, researchers, manufacturers and citizens need to guard against it at all costs, even at the detriment to some of the economic dogmas that make up the fabric of our consumerist society. We can do this through greater emphasis on personal responsibility and communication, as well as better understanding of the nature of scientific evidence. I guarantee that we will not only seem healthier, but we will also be healthier. And perhaps happier too.