10 things that stand out from the mammography week to remember (forget?)

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Many of us might rather move on and end all of the discussion about the US Preventive Task Force’s mammography recommendations last week. But I think it’s essential that we reflect on ten things that stand out from last week:

1. Many in the general public (most of those quoted in news stories) are not prepared for evidence to be used in making health care recommendations. They haven’t been prepared by the health care industry, by their physicians, or by the news media.

2. Many in health care (many of those quoted in news stories) are too invested in their own preferences to allow evidence to make a difference in their practices.

3. There is an undeniable and clear bias in many news stories, reporters and news organizations for promoting screening – evidence be damned. I’ve reported on this before and last week provided overwhelming new evidence. (Mind you – I said “many”, not “all.”)

4. The USPSTF, which is a collection of independent experts, has no public relations arm. They simply review the evidence and publish their recommendations.

5. The public relations machinery of the American Cancer Society, the American College of Obstetrics and Gynecology – and other groups that opposed the USPSTF recommendations – helped the anti-USPSTF message rule the media all of last week.

6. Politicians chimed in – sometimes distorting the evidence beyond all recognition. The clash between politics and science at such times is predictable and disgusting.

7. The rhetoric used to oppose the USPSTF recommendations was the ugliest and most ill-founded I can remember.

8. There was some excellent journalism done on the issue last week, but it was overwhelmed by and drowned out by the drumbeat of dreck shoveled out by many news organizations – including in much (not all) of what was provided on network TV.

9. The week may have caused harm to the nation’s discussion of health care reform.

10. The week was certainly a setback for the nation’s understanding of science, of evaluation of evidence, of the potential harms of screening tests.

Kirsten Boyd Goldberg writes in this week’s Cancer Letter:

“In the past three decades, attempts to develop rational, evidence-based screening guidelines for breast cancer in the U.S. have always generated intense controversy.

What happened this week with the new U.S. Preventive Services Task Force recommendation has happened many times before:

An independent panel of experts is assigned to rationally assess the data and evaluate the level of evidence for screening in order to minimize the role of commercial and political interests in promoting a test that might or might not reduce cancer mortality.

The moment the panel’s document is released, political combat ensues. The result is a cacophony. The resulting cacophony angers politicians who don’t understand why “the experts” can’t agree on “one simple message.”

The anger of politicians frightens federal health officials who want to protect their budgets and their ability to run programs without meddling from Congress.

The federal health officials bob and weave and distance from the expert panel’s recommendations.

The expert panel becomes the focal point of the anger. Commercial and political interests make accusations about the panel’s composition, experience, and potential conflicts of interest. The panel must have been politically influenced, critics charge. The specter of “rationing” health care is raised.

The beleaguered panel members either defend their recommendation or say nothing.
Rational assessment has always had a tough road to travel in the U.S., starting with the dawn of randomized clinical trials, when doctors didn’t accept trial results as being valid. But that’s another story.”

She’s absolutely correct. Those who don’t learn from the past are doomed to repeat it.

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Duncan Moore

November 23, 2009 at 6:37 pm

I agree with Gary’s overall assessment, and find especially insightful the scenario described by Goldberg. But can’t we also suggest that the Preventive Services Task Force was at best naive, and maybe even a little dumb, to release such a bomb into the most politically charged moment for healthcare in the past 15 years? Couldn’t they have waited until January, or maybe until Congress adjourned in December, or even just for the Thanksgiving break? Members of Congress are nervous nellies right now, trying to figure out which way the wind is blowing on these momentous issues. To drop one more incendiary problem in their laps doesn’t help the larger cause of reform or science-based medicine.

Rose Hoban

November 24, 2009 at 10:17 am

Great analysis of what went on last week – I’ll be using this post during a presentation I’m doing next week at UNC on how researchers can work with the media better. One of the USPSTF members will be in the audience, I don’t plan to pull any punches.
To build upon the previous commentator, indeed task force members were naive (Gina Kolata explores this in the Times last week)… had they not been, they would not have released the report they way they did.
But this is why your windmill tilting exercise here, Gary, is so important. Keep it up!!! We need to call out journos who do piss-poor work, who confuse anecdote with data and then who layer that with their own prejudices. We also need to call out docs and people in the scientific community who are so completely isolated from the ‘real world’ that they can even imagine that how last week was handled was remotely OK.

Chukwuma Onyeije

November 26, 2009 at 5:47 pm

I’d like to chime in and thank you for the thoughtful coverage that you have brought to this issue. As a clinician and blogger, I have lamented the fact that we as a nation have a bias which dictates that “more is always better” in medicine. Unfortunately, this tendency does not get us better care. More often than not it results in care that is more expensive and in some cases less beneficial.
The saddest part of this entire saga has been (as you have pointed out) physicians and medical organizations that dismiss evidence out of hand (and without analysis) in order to protect their own interests. That has been a sad spectacle and does not bode well for the adoption of evidence based guidelines to improve public health.

Nicholas Fogelson, MD

November 26, 2009 at 6:56 pm

Gary –
Thanks for your great comments. I am right with you on this one. Right now, our country is completely against anything new. We’re against health care reform, even though its probably the right thing. And now we’re against the idea that mammography may not be so helpful for younger women, even though the evidence is pretty strong for this.
You are right that America is not ready for health care decisions to be made based on evidence. This is because, by and large, Americans are not scientists. Most Americans do not think in the hypothesis->test->conclusion method. We think in the the opinion->new truth method. We go with our Gut, to quote Stephen Colbert.
The USPTF has produced strong evidence to support their opinion that breast cancer screening may be overused in younger low risk women. As a scientist and physician, I found that evidence compelling from the outset. I was dismayed that both the lay and medical media immediately condemned the USPTF’s report, and even more dismayed that that condemnation was not supported by evidence, but rather by anecdote. We believe in evidence based medicine, until it says something we don’t like, then its back to empiricism.
As I said in a blog post on my site, we need both empiricism and evidence. We need epidemiologists to look at the big picture, so that physicians and other health care workers can look at the individuals. It is too much to ask an epidemiologist to consider individuals, and in most cases, it is also too much to ask a physician or patient to consider the population as a whole. Together, epidemiology and empiricism can create a better health care model than either alone.

e-Patient Dave

November 26, 2009 at 7:51 pm

Duncan, your observation about the release’s timing is a sign of what Gary said: they don’t have a public relations arm. Good PR is not flackery, it’s a skill, a profession that can make a difference at times like this.
There’s also the matter of phrasing the announcement to make clear what is and IS NOT being recommended. Mark Boguski’s new blog http://is.gd/54mTj quotes airhead Jacylyn Smith saying “I’m shocked. They want to abandon proven therapies. It’s wrong.” ARG! Therapies? She ought to have her right to speak in public revoked. (Not really, but holy crap.)
Delivering such conclusions carefully – and *effectively* – is a skill. You need to be conscious of how things will land in the public ear. The announcement can fail as badly as bad science can fail – in either case, the mission of good advice has failed.
That’s no indictment of the scientists. To the contrary, it recognizes that good public relations is a distinct and important skill.
Finally, Gary, I’d like to tweak your #6: You said “The clash between politics and science at such times is predictable and disgusting,” and I’d suggest “The clash between politics and good medical advice for women.” That spotlights who are the real victims of the political crap. It’s a scandal.

Christophe Kopp

November 27, 2009 at 2:09 am

Excellent point, not really news, in 2007 Prescrire, an independent CME media based in France, wrote: “Mammography screening for breast cancer does not offer any proven benefit for the general population under the age of 50, barring any particular risk. Between the ages of 50 and 69, the effectiveness of current screening is limited. Over the age of 70, there is not sufficient available evidence in support of screening. See link above
Same problem with prostate cancer. In 2009, the value of routine screening for prostate cancer has not been clearly proven, but its adverse effects have. see here http://english.prescrire.org/spip.php?article965&f=1

Janice McCallum

November 27, 2009 at 9:22 am

I agree with comments above that how the message was delivered (and when) was a major contributor to the backlash over the new guidelines on mammography from USPSTF. Ellen Goodman addresses this issue in her column today (11/27/09): http://www.boston.com/bostonglobe/editorial_opinion/oped/articles/2009/11/27/a_tone_deaf_message_on_mammograms?mode=PF
A few outtakes:
‘As the task force’s Dr. Diane Petitti said with classic understatement, “We probably, in retrospect, could have been more clear.”
What the scientists did, says Carnegie Mellon’s Baruch Fischhoff, who studies the fine art of risk communication, “is give an external view of what’s true at the population level.” In other words, they told the statistical story from up high.
“What people want is an internal view – what does this mean for my life?” Fischhoff said. “They were off in their own world.”’
I’ll add that this incident illustrates that the need for intermediaries that help interpret scientific research is stronger than ever. Gary does an outstanding job of highlighting deficiencies in mass media medical reporting. We also know that the traditional medical/scholarly publishing model is in the process of being disrupted by more direct online collaboration between research organizations and scientists. As we continue to adopt digital record-keeping, we are also faced with accelerating quantities of outcomes data from registries and EHRs that will enable new models for medical research and analytics. Interpreting the results from the increasing number of empirical studies will take skill in statistics, public health and communication. I don’t think we should expect the scientists to be expert communicators in all (or even most) cases. Rather, I think expert communicators (I prefer a term other than PR, because of the “spin” connotations of PR)are needed.
There already exist many healthcare/medical communications specialists, but a great many are employed by Pharma or large STM publishers. In my view, we need to develop a new model for medical information communication that can interpret and publish research results without the long delays inherent in the existing journal-publishing method. Better cheaper faster publishing technology and social media tools can certainly contribute to advances in healthcare communication, can’t they?
I’ll close with another outtake from Ellen Goodman’s column:
“It’s important also because we all have a stake in evidence-based medicine – what’s the alternative? – and have to accept that evidence keeps changing. This is not just true for mammograms and pap smears. We’ve learned the downside of screening older men for prostate cancer. And we keep revising advice on everything from virtual colonoscopies to bone marrow treatment for breast cancer.
No one wants scientists who bow to politics or trim research to provide false comfort. But facts do not speak for themselves. They need to be delivered by people who can listen, frame a message, and prepare the ground.”