I will deliver one of the keynote talks at the International Shared Decision Making conference in Lima, Peru.  Dr. Victor Montori of the Mayo Clinic invited me.  Ironically, we will meet in Lima for the first time, even though we live only 70 miles apart in Minnesota. My topic: “What Consumer-Centered Journalism Could Do to Promote Patient-Centered Care.”

Then I’ll speak on a panel at the World Conference of Science Journalists in Helsinki, Finland. The topic of the panel:  “Misuse Them And Abuse Them:  Fighting For Facts In Science Journalism.” You can follow from home by following the Twitter hashtag for the session – #sj4facts.  The broader conference hashtag is #WCSJ2013.

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The New York Times story, “The $2.7 Trillion Medical Bill: Colonoscopies Explain Why U.S. Leads the World in Health Expenditures,” about how the exorbitant costs associated with colonoscopy contribute to the high costs of American medicine has provoked some interesting responses.

Ronald Vender, the President of the American College of Gastroenterology has written a strident letter to the editor in defense of colonoscopy, claiming that colonoscopy is a public health success story — and “the one and only preventive cancer test that has been demonstrated to significantly reduce the incidence of colon cancer and death from the disease.”

Unfortunately, this statement is wrong.   The only colorectal cancer screening tests that have been proven efficacious in reducing colorectal cancer incidence and mortality, i.e., evaluated in randomized controlled trials,  are the far less expensive fecal blood tests and flexible sigmoidoscopy.

Colonoscopy is being evaluated in several randomized controlled trials in the US and Europe, but incidence and mortality results will not be available for many years.

While Dr. Vender noted that an article published in the New England Journal of Medicine (and reported by the New York Times in an article entitled “Report Affirms Lifesaving Role of Colonoscopy“) was evidence for the benefit of colonoscopy, the study was actually an observational study that was subject to important biases.

While journalistic hyperbole may be disappointing, so are the misleading statements from the American College of Gastroenterology.

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Key excerpt:

“While several cheaper and less invasive tests to screen for colon cancer are recommended as equally effective by the federal government’s expert panel on preventive care — and are commonly used in other countries — colonoscopy has become the go-to procedure in the United States. “We’ve defaulted to by far the most expensive option, without much if any data to support it,” said Dr. H. Gilbert Welch, a professor of medicine at the Dartmouth Institute for Health Policy and Clinical Practice.

In coming months, The New York Times will look at common procedures, drugs and medical encounters to examine how the economic incentives underlying the fragmented health care market in the United States have driven up costs, putting deep economic strains on consumers and the country.”

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“While the treatment has shown promise for treating brain and spinal tumors in children, the Hopkins facility is explicitly banned from treating pediatric cancers. That’s because Sibley Memorial Hospital doesn’t have a pediatric unit, nor does it have a permission from the city to build one.

(The 3 centers) will all have to turn to treating adult cancers — largely prostate cancer, for which proton therapy hasn’t been proved to improve results for patients or to reduce side effects — to stay profitable.

…

“Neither [Hopkins nor MedStar] should be building,” says Dr. Ezekiel Emanuel, a former health care adviser to the Obama administration who is now at the University of Pennsylvania. “We don’t have evidence that there’s a need for them in terms of medical care. They’re simply done to generate profits.”

The higher costs of proton services ultimately trickle down to taxpayers, employers and consumers in the form of higher health insurance premiums.

“It’s hard to bend the cost curve when you’re spending a lot of money,” says Emanuel. “These are tens if not hundreds of thousands of dollars in treatment for interventions that do not improve survival, improve quality of life, decrease side effects or save money.”

There are already 11 proton therapy centers in the U.S., and the Maryland Proton Treatment Center in Baltimore is one of 17 more on the way.

Former Boston medical center CEO Paul Levy wrote on Twitter, “Here they go again.”

In a New York Times editorial last year, Ezekiel Emanuel and Steven Pearson referred to the proliferation of proton beam therapy facilities as “crazy medicine and unsustainable public policy.”

If you missed it, Johns Hopkins Medicine also this week sent out a news release about its robotic surgery system.

We’ve written many past posts about questions of “the medical arms race” concerning both robotic surgery and proton beam therapy.

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Health care marketing of robotic surgery systems knows no bounds.  At the end of this piece, you can see a list of past posts on this marketing trend.

Besides the explosive use in prostate surgery, we’ve seen promotions of robotic “firsts” for:

• first robotic cholecystectomy
• first TransOral Robotic Surgery (TORS) to treat sleep apnea
• first hybrid revascularization, which combines the robotic single-vessel small thoracotomy procedure with angioplasty

You name the body part, there’s somebody looking to do robotic surgery on it.  Remember the old saying, “To a man with a new hammer, everything looks like a nail.”

Do the big health care players feel they need to play the marketing/publicity game as well?

Johns Hopkins Medicine today sent out this news release:

At the end of the release is this special offer: “Patients who have undergone the robotic single-site procedure are eager to share the experience with the media.”

What does “among the first in the country” mean?

A brief web search for “robotic single-site hysterectomy” turned up many results, including claims by:

• Decatur Memorial Hospital, Georgia
• Baptist Hospital, Pensacola, FL
• Saddleback MemorialMedicalCenter, Laguna Hills, CA
• Las Palmas Medical Center, El Paso, TX
• Texas Institute for Robotic Surgery, Austin, TX
• Silver Cross Hospital, New Lenox, IL
• Doyleston Hospital, Doylestown, PA

But beyond how you define “among the first,” I wonder what does being among the first really mean to patients?

• They may want to ask themselves if they WANT to be one of the first to be operated by a certain surgeon in a certain setting?
• They might wonder what the learning curve is for robotic single-site hysterectomy.  In other words, how many cases does it take for a surgeon to become proficient?

As promised earlier,  here are some of our past posts on hospitals marketing their robotic surgery systems:

• Ob-Gyns’ statement on robotic hysterectomy.

Excerpt: “Aggressive direct-to-consumer marketing of the latest medical technologies may mislead the public into believing that they are the best choice. Our patients deserve and need factual information about all of their treatment options, including costs, so that they can make truly informed health care decisions. Patients should be advised that robotic hysterectomy is best used for unusual and complex clinical conditions in which improved outcomes over standard minimally invasive approaches have been demonstrated.”

• Another study analyzes hospitals’ unsubstantiated marketing claims for robotic surgery

• How robotic surgery is promoted on the other side of the globe

• Robotic surgery safety/marketing concerns in Boston Globe & NY Times stories

• “Gizmo idolatry,” robotic prostatectomy, and real data

• Marketing marriage made in heaven (?) – medical center & mall & surgical robots

• Hospital websites hype robotic surgery, ignore risks, influenced by manufacturer

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• “Weaknesses. The most important things you can tell me about a study are its weaknesses. Are there inaccuracies in the paper? Statistical failings? Do you think the conclusions don’t hold water? The last thing I want to do is to credulously cover a weak study. But I don’t work in your field and my bullsh*t detector is probably less finely calibrated than yours. So I’m basically relying on you to help me not mislead my readers. Maybe your comments will persuade me to drop a story because it’s just that bad. Maybe your comments will help me to confront an editor and say: “We shouldn’t cover this story that you seem so insistent on. Look: all these scientists think it’s bunk.”

Read his blog post to see the other seven.

He also lists what he doesn’t find useful, including:

• Boilerplate adjectives. Please don’t say “This study is interesting…” when you actually mean “dubious” or “boring”.
• And on that note, the world’s most banal quote is: “This research is interesting but more work needs to be done”.

He concludes: “Critical comments do carry personal risk, but they also help us to fight credulous and uncritical science reporting.”

The comments posted in response to his blog post are also worth reading.

On the Columbia Journalism Review Observatory blog, Curtis Brainard wrote:

“There is no shortage of advice for scientists on talking to journalists. Just look at the resources page provided by AAAS, the country’s largest general scientific society. There, among other titles, one can find classics such as:

• “A Scientist’s Guide to Talking with the Media: Practical Advice from the Union of Concerned Scientists”
• “Don’t Be Such a Scientist: Talking Substance in an Age of Style”
• “Am I Making Myself Clear: A Scientist’s Guide to Talking to the Public”

They’re great books, with excellent tips, but the focus tends to be encouraging scientists to be proactive – how to publicize their research, garner media attention, and explain their work clearly. There are suggestions for reacting to media inquires as well, but they’re usually not the primary concern, and they’re often couched in terms of a researcher describing his or her own work.

Thankfully, Ed Yong, a freelance science reporter, has drafted a concise crib sheet for what might be the more likely scenario: what to do when a journalist calls asking about someone else’s work.”

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“On the one hand is over-treatment and over-medicalization of mental health issues, often fueled by a pharmaceutical industry interested in the broadening of the boundaries of “illness” and in the creation of more and wider diagnostic categories and thus markets for “selling sickness.” On the other hand exists profound under-recognition of the suffering and breadth of mental health issues affecting millions of people across geographies, which is a global problem.

…

Over-diagnosis in mental health risks unnecessary tests and treatment, the stigma associated with being labeled mentally ill, and the considerable costs of testing, treatment, and wasting resources that could be better utilized elsewhere

The recent DSM-5 (psychiatry’s Diagnostic & Statistical Manual) process is a lightning rod for these concerns: this month’s update of the psychiatric diagnostic manual has been widely criticized for continuing the tradition of broadening diagnostic categories and adding new conditions that redefine more people as having mental illness and in need of pharmaceutical treatment. That decisions about DSM-5 categories are made by experts with financial ties to the industry that benefits most from a widened patient population, is particularly worrying.”

The piece lists ongoing efforts to address the topic:

• the Selling Sickness conferences of 2013 (http://www.sellingsickness.com) and of 2006 which coincided with publication of the PLOS Medicine Disease Mongering Collection
• the effort to require that all clinical trials be registered and data be reported and shared, so that the full picture of the benefits and harms of tested interventions can be seen (see, for example, http://www.alltrials.net).
• Conferences hosted by PharmedOut (http://www.pharmedout.org/) and Avoiding Overdiagnosis (http://www.preventingoverdiagnosis.net/)

It concludes:

“The largest challenge may be to recognize and prioritize mental health globally—with the requisite political visibility, funding, research, and attention—without reducing it to an object for disease mongering, pathologizing, and harmful over-treatment.”

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This is a topic that receives very little attention.

After all, who can argue with attempts for early intervention against “the silent killer”?  Well, evidence is not a bad argument, writes Heath, a leading voice against disease-mongering.

Excerpts:

• “The 2012 COCHRANE Review on “Pharmacotherapy for Mild Hypertension”1 concluded that antihypertensive drugs used in the treatment of otherwise healthy adults with mild hypertension (systolic blood pressure [BP], 140-159 mm Hg, and/or diastolic BP, 90-99 mmHg) have not been shown to reduce mortality or morbidity in randomized clinical trials”
• “The Cochrane Review also reports that antihypertensive drug treatment for mild hypertension caused 9% of patients to withdraw owing to adverse effects. Each of these patients has experienced the harm of an adverse effect for no established benefit. The waste in terms of the costs of medication and investigations and the time of both patients and health care professionals is enormous.”
• In view of the mounting evidence of both waste and harm, it is well time that we returned to the higher threshold of 160/100mmHg for the pharmaceutical treatment of hypertension in otherwise healthy people. The Eighth Report of the Joint National Committee on Prevention, Detection, Evaluation, and Treatment of High Blood Pressure provides a timely opportunity for achieving this, but, with the probable degree of industry entanglement, it seems a remote possibility. However, sooner or later the pharmaceutical treatment of mild hypertension seems likely to be consigned to what the novelist Amitav Ghosh has described as “medicine’s vast graveyard of discredited speculations.”

This is worth noting:  I could not find one mainstream news organization that reported on Heath’s article.  Why not? Too contrarian? It’s just mild hypertension?

We have news organizations that publish stories about journal articles on case series of 1 to 4 patients and make sweeping proclamations based on these.  Then why not this?

ADDENDUM ON MAY 30:

On a Forbes blog, Dr. Peter Lipson challenges Heath’s stance, concluding: “One Cochrane report combining four studies is not about to change the way most of us practice medicine. Given the disease burden caused by high blood pressure, none of us should rush to raise our treatment thresholds. While Dr. Heath raises some interesting points, her call for significantly raising the treatment threshold (to 160/100) should be discarded until stronger evidence supports her ideas.”

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• How Patient Centered Are Medical Decisions? Results of a National Survey

“Respondents reported much more discussion of the pros than the cons of all tests or treatments; discussions about the surgical procedures tended to be more balanced than those about medications to reduce cardiac risks and cancer screening. Most patients (60%-78%) said they were asked for input for all but 3 decisions: medications for hypertension and elevated cholesterol and having mammograms (37.3%-42.7%). Overall, the reported decision-making processes were most patient centered for back or knee replacement surgery and least for breast and prostate cancer screening.

Discussions about these common tests, medications, and procedures as reported by patients do not reflect a high level of shared decision making, particularly for 5 decisions most often made in primary care.”

• Decision-Making Preferences Among Patients With an Acute Myocardial Infarction
• Association of Patient Preferences for Participation in Decision Making With Length of Stay and Costs Among Hospitalized Patients
• Relationship Between the Prognostic Expectations of Seriously Ill Patients Undergoing Hemodialysis and Their Nephrologists
• Shared Decision Making:  Comment on “Association of Patient Preferences for Participation in Decision Making With Length of Stay and Costs Among Hospitalized Patients”

There was wide variation in the framing and completeness of the stories we saw about these journal articles.

Reuters Health was the most complete of the stories we saw, addressing at least briefly each of the four journal papers and the editorial.

The Los Angeles Times focused only on cost, “Patients who helped with medical choices had higher bills.” It reported on only one of the 5 articles in the journal. Why? Were the national survey and the other papers and the editorial not worthy of at least a line?

ModernHealthCare.com also reported only on the cost article, “Shared decisionmaking may spur higher costs, longer hospital stays.“  But the article did include this independent expert quote:

“If an organization engages in shared decisionmaking to look good, make more money, save money or improve outcomes, they may be disappointed,” Dr. Victor Montori, director of the Health Care Delivery Research Program in the Mayo Clinic Center for the Science of Health Care Delivery, Rochester, Minn., said in a January e-mail. “Shared decisionmaking is a manifestation of your commitment to the patient.”

And it at least quoted the editorial writer:

“But Dr. Mack Lipkin, professor of medicine at New York University and an attending physician at Bellevue Hospital, New York, found fault with the latest study’s conclusion, arguing that patient preferences were subtle and nuanced, and not able to be captured accurately by a single survey question.

“Their methods leave me uncertain as to what is actually being measured,” said Lipkin, who wrote an accompanying commentary in the journal. “What people say on a questionnaire and what they prefer are not the same thing. When patients and doctors agree, there’s more likely to be a coherent plan and adherence to treatment, and that is likely to reduce costs.”

It would have been better (and not difficult) if the LA Times and Modern Health Care had simply posted links to the other papers – on the same topic in the same journal – as I did above.

Meantime, where were all the other news organizations on this topic?  On a holiday when you’d think they would have been scrambling for news.  This one was gift-wrapped and dumped in their laps, and many still didn’t respond.

Update two hours later:

HealthDay also focused only on costs, “Involving Patients in Decisions Raises Health Care Costs, Study Finds.”

So did MedicalDaily.com, “Time is Money: Patient Involvement in Medical Decisions More Costly Than Letting Doctors Call The Shots.”

Addendum on June 1:

Dave deBronkart (e-patient Dave) blogged, “When Bad Heads Go Viral: How A Malformed Headline Is Skewing Our View Of The Patient’s Role In Medicine.”

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