Recently in Consumer anger/confusion Category

Washington Post media columnist Howard Kurtz strayed beyond media observations and injected his own comments about the US Preventive Services Task Force breast screening recommendations.

He calls the task force recommendation a "don't-worry-be-happy-till-you're-50 finding."

He defines "the essential problem with such studies" as "in the end it's a very personal decision."

Exactly. And that was the entire point of the USPSTF recommendation - that women need to weigh the harms and benefits in consultation with their doctors. But Kurtz must not have read that far.

And then he goes on to cite a list of journalists who wrote about their own personal opposition to the recommendations.

But he didn't quote even one person who wrote in a more balanced way about the evidence behind the recommendations. So, while his column was headlined, "A battle over breasts," he didn't present much about "the other side" in this battle.

Then again, Kurtz has exhibited an advocacy stance for the screen-screen-screen mentality in the past in his handling of a friend's promotion of prostate cancer screening.

My friend Robert Davis writes about five popular falsehoods he's seen this week in the "the widespread confusion, consternation, and even anger that the new (US Preventive Services Task Force mammography) guidelines have unleashed." His five:

1. This is all about saving money.

2. This is about rationing.

3. Early detection saves lives.

4. The fact that I or someone I know was saved by a mammogram proves that more testing is better.

5. The shifting recommendations prove that scientists are clueless.

Read his entire column. He's a smart guy and his summary is insightful.

I am a frequent critic of TV health news - and especially of much of this week's TV coverage of the US Preventive Services Task Force mammography recommendations. So I want to make special note this week of some of the fine work by Dr. Nancy Snyderman on this issue. I've seen several examples where she offered more explanation and context than her network TV competitors.

Case in point: this clip on yesterday's NBC Today Show.

In it, Snyderman said: "What we as a population were unwilling to accept - which has become very apparent in the last 48 hours - is that we didn't like the message." Yet she emphasized that the message was what the science shows.

She said HHS secretary Sebelius threw the task force under the bus and oversimplified the message by telling women "keep doing what you're doing."

She said "emotion, anecdote, lobbying, advocacy groups, doctors and patients" led to a political reversal.

She said "This is the role of scientists to take the emotion out of the science. That was their charge - look at the hard numbers and give recommendations back."

While she editorialized on Sebelius, her even-handed comments on the work of the task force stood in sharp contrast to some of what was broadcast on ABC, CBS, CNN and Fox.

For a long time, I've urged health care journalists to refer to the recommendations of the US Preventive Services Task Force and to educate readers/viewers about how the group operates.

Perhaps one of the reasons the task force's recommendations this week caught so many people by surprise is that journalism hasn't done a good enough job of:

• explaining the uncertainties that still exist and always have existed about mammography
• explaining the work of the USPSTF

Gina Kolata of the NYT offers somewhat of a backgrounder/explainer today.

All of their work - how they do it - what they base their recommendations on -who they are - is available online - and has been.

Since they're an independent group of experts from across the country, they have no PR machine like the American Cancer Society does. So it's easy for the ACS to rule the airwaves and the columns when they disagree with something the USPSTF states.

But I think journalists have failed badly in explaining this work. And the harm done to evidence-based medicine this week may be lasting.

More on the reactions to the US Preventive Services Task Force mammography recommendations. Susan Perry writes on MinnPost.com about:

"... the rampant, breathless fear-mongering rhetoric that has framed much of the media's response to the recommendations. ...

On ABC's daytime talk show "The View," co-host Elisabeth Hasselbeck made the stunning claim that the recommendations were "gender genocide."

I can't tell you how many times I've used that line in interviews recently.

So it was refreshing to see someone else - Steven Pearlstein - use it today in the Washington Post. (* Actually, either he or the copy desk butchered the quote, leaving out the "not." Surely they meant well, but the quote and the point makes no sense without it, and indeed, is NOT what the standard line is. I've added it in the following excerpt with a * and hope the Post corrects this soon.)

"I should acknowledge that I have no idea who should and should not get routine mammograms. But I know enough about statistics to say that the issue is not settled just because you know of someone in her 40s whose breast cancer was detected by a mammogram and cured. As economists and medical researchers are fond of saying, the plural of anecdote is *(not) data. ...

As is often the case in such matters, those raising the most fuss were those with greatest financial interest in mammography (the radiologists and the makers of mammography machines) and the disease groups (in this case, the American Cancer Society), which tend to resist recognizing limits on how much time, money and attention is devoted to their cause.

"How many mothers, sisters, aunts, grandmothers, daughters and friends are we willing to lose to breast cancer while the debate goes on about the limitations of mammography?" Otis Brawley, chief medical officer of the American Cancer Society, asked in an op-ed article in Thursday's Washington Post. Dr. Brawley cleverly didn't answer his own question, but the clear implication of his question was that the only acceptable number should be zero. And it is that very attitude, applied across the board to every patient and every disease, which goes a long way in explaining why ours is the most expensive, and one of the least effective, health-care systems in the industrialized world."

Not only did Dr. Sanjay Gupta of CNN show his imbalanced perspective on the US Preventive Services Task Force breast screening recommendation. But CNN's non-physician medical correspondent, Elizabeth Cohen, also offered her opinion on the air.

She said:

"This task force is the only big group that is saying this. There are lots of groups that disagree with this. So for me, a woman in her 40s who has to make this decision, I look at it this way. I say, alright, government task force says I don't necessarily need a mammogram. On the other hand, the American College of Obstetrics and Gynecologists says I should get one. The American Society for Clinical Oncology says I should get one. The American Cancer Society (a chuckle and smirk now appear in her voice and on her voice) say I should get one. I think you can see how that decision - how that weighs out."

No, Elizabeth, I don't see from what you cited how that decision should play out.

Because you haven't explained any evidence to me.

You haven't explained the need for shared decision-making between informed patients and their health care providers.

You've merely drawn a red state/blue state map for me - except that your map was incomplete. What do you mean by "big group"? Do you mean the organizations with big PR machines that usually spin their stories through you?

Because the National Breast Cancer Coalition, Breast Cancer Action, and the National Women's Health Network are among the "little groups" - as you must define them - who support the US Preventive Services Task Force recommendations.

CNN, what have you done to educate viewers on this issue?

What have you done to explain the data?

And why should I care about what Elizabeth Cohen decides?

Why should I care any more about her decision than about the story of women who regret that they ever were screened? (A story she chose not to tell.)

You can hear what Cohen said and how she said it in the clip below from Newsy.com.

You'll also see the comments from Fox News' "Dr. Manny." Perhaps CNN has achieved its goal. In an attempt to catch Fox News in the ratings, it has become just like Fox News.

Slate republishes a five-year old piece that does two things:

• a good job of explaining the potential harms of screening
• re-establishes the fact that this is NOT a new debate (by the very fact that it's 5 years old and could have just as easily been 15 years old).

In the stories reported by major news organizations all across the US, there have been countless quotes that make wild, unsubstantiated charges about the motivation behind the US Preventive Services Task Force's breast screening recommendations.

A quote in a New York Times story yesterday:

"Why all of a sudden this change?" said Karen Sun, 41, who was loading her groceries into her car here in Los Angeles. "It feels out of nowhere."

As the Washington Post led with in their story, this has been a decades-long debate. What we have seen in the past 3 days is akin to what happened with the uproar 12 years ago after a NIH Consensus Conference on this issue made a concluding statement that many women - and their politicians - disagreed with.

In an ugly clash between science and politics, confusion reigned.

And now it's happening again.

From the LA Times:

Some Republicans jumped on the report as the kind of government intervention in medical decisions that Obama's healthcare plan would bring.

"This is really the first step toward that business of rationing care based on cost," said Rep. Phil Gingrey (R-Ga.), a physician.

Where is the evidence for that? That is fear-mongering rhetoric.

In the Washington Post:

"We can't allow the insurance industry to continue to drive health-care decisions," said Rep. Debbie Wasserman Schultz (D-Fla.), who said earlier this year that she had undergone treatment for breast cancer.

Wasserman-Schultz, whose legislation promoting breast cancer education in young women was widely criticized by evidence-based experts, should be forced to produce evidence for her claim as well.

And on ABC last night, a physician was allowed to say - unchallenged - that mammograms pick up early cancers when they need less treatment. If anecdotes are going to rule the day, then that physician should have to counter the anecdotes I've heard from women whose early DCIS or ductal carcinoma in situ - often called "pre-malignant" or "pre-cancerous" - was picked up by mammograms. And the range of treatment options then thrown at them - as aggressive as prophylatic bilateral mastectomy - left the DCIS-diagnosed to wish that they had actually received a diagnosis of invasive cancer because the choices were easier and more clear cut. These are real stories I heard from real women. The story - the discussion - isn't complete without taking into account the experiences of women like that.

I watched all three TV networks' lead stories from last night's newscasts - all three on the US Preventive Services Task Force's new breast cancer screening recommendations. Lots of talk about "anger, confusion, concern, fear, outright revolt, disturbing, shocking" reactions from women and doctors all across the country.

First, I'll note a reasonably well-balanced job by CBS' Dr. Jon LaPook and by NBC's Dr. Nancy Snyderman. LaPook included a woman who had experienced a false positive mammogram. Snyderman talked about data versus personal anecdotes.

But ABC's Dr. Timothy Johnson gave a personal recommendation - perhaps only because he was asked to by anchor Charles Gibson - and recommended "sticking with the current guidelines." He said he understood concerns about costs and quality. But that misses the underpinning of much of the USPSTF's recommendation and rationale. It implies that the USPSTF considered costs, which they have repeatedly reiterated they did not. He never addressed false positives and the harms thereof. So his summary was misleading and incomplete.

And CBS again allowed Dr. Jennifer Ashton to give her own personal medical opinion, saying "I am not telling (women) to deviate from their screening practices."

I have a lot of problems with the networks giving airtime to the opinions of their physician-correspondents. Do they ask political reporters about their voting habits? Do they ask economics reporters what their investments are? Do they ask the White House correspondent if they personally like the President or support his stances?

I don't personally care what Timothy Johnson or Jennifer Ashton recommend - and I don't think there's any reason for anyone in the viewing audience to care. In this venue, they are supposed to be journalists. Not recommenders. Not opinion-promoters.

Instead of promoting their celebrity docs, the networks should use that precious air time to educate people on the evidence behind the USPSTF recommendations.

All three networks - and many other news organizations - are treating this issue as if it's new. There never has been certainty about mammography recommendations for women in their 40s. And it was just 12 years ago that an NIH Consensus Conference on this issue resulted in a great uproar - what one editorialist described as "what took place seemed more akin to the Queen's order in Alice's Adventures in Wonderland: "Off with her head!" Thus began the latest round in the debate over recommendations for breast-cancer screening."

Journalism has to take responsibility for conveying far too much certainty about screening issues. And at times like this, when evidence-based bodies speak up, journalists - and the public they serve - act as if their worlds have been shaken. But, in fact, their world on this issue never was cast in concrete. Anyone who spends anytime following this issue would know that.

In the face of the confusion, journalists can fuel the flames by interviewing endless women about their personal anecdotes. Or they can explain, give context, history, guide readers and viewers through the confusion.

The horse has left the barn. That's the conclusion of an editorial in response to the Archives of Internal Medicine study (see post below this one) on the relatively poor quality discussions men are having with their doctors on prostate cancer screening decisions.

Editiorial writers Steven Woolf and Alex Krist pose some tough questions:

"Some might even contend that the question addressed by (the study) (how often and how well is shared decision-making or SDM practiced) is beside the point--the horse having left the barn. The opportunity to embrace SDM occurs early in the diffusion of technologies, when they have not yet been adopted by the medical community as standards of care and when patients can freely choose among uncertain options. Prostate-specific antigen is at a different stage of diffusion. Today's practice environment presents few incentives or support tools for those clinicians and patients who prefer a discussion rather than simply marking a checkbox for PSA on a laboratory requisition form.

Promoting SDM under these conditions sets challenges for researchers and health care delivery systems. ...

Making SDM feasible also requires changes in the practice environment, beginning with tort reforms that protect clinicians who give patients an informed choice about cancer screening, as well as reimbursement reform to facilitate the time investment for such counseling. Procedures that allow for longer visits and access to counselors--either the primary care clinician, colleagues at practices, or "decision counselors" to whom patients can be referred--must be tested for feasibility and acceptability. Best practices for SDM should be detailed in practice guidelines for PSA screening, replacing the now vague language about informing patients before testing. In concert, messages from the public health community must do their part to shift public attitudes about screening to encourage getting facts over getting tests.

Without these efforts by researchers, health systems, public health leaders, payers, and the courts, SDM is unlikely to gain its footing in routine patient care. In the United States, where medical technologies are often adopted long before their effectiveness and safety are confirmed, the difficulties of implementing SDM for prostate cancer screening will likely recur with other modalities of care. What is ultimately required is a deeper change in culture among providers and consumers of health care to delay dissemination, resist the assumption that newer is better, wait for evidence, tolerate observation over intervention, and accept uncertainty."

An important paper in the Archives of Internal Medicine shows how the quality of the discussion men are having with their physicians about prostate cancer screening does not reflect shared decision-making. The discussion often focuses on the benefits of screening without mentioning the harms. And in fact many men weren't even asked about their preferences regarding screening.

From the paper describing the study:

The finding that 30.1% of subjects underwent PSA testing without first discussing screening... is a disconcerting finding. Only 20.6% of discussions presented both the pros and cons of screening and elicited the subject's preferences for testing.

The authors conclude:

Given the challenges of meeting these expectations in routine clinical encounters, alternative strategies, such as decision aids, need to be considered to ensure a process that engages patients in decision making, provides them with information about alternative strategies, and facilitates the incorporation of their preferences and values into the medical plan.

Disclosure: the study was funded in part by the Foundation for Informed Medical Decision Making, which supports my HealthNewsReview.org project.

"The Misperception That Clinical Trial Data Reflect Long-term Drug Safety" is the title of a commentary in this week's Archives of Dermatology.

The authors focused on one particular drug - Raptiva (efalizumab) for psoriasis - and the fact that the European Medicines Agency (EMEA) has recommended the suspension of the marketing authorization for it after concluding that its benefits no longer outweigh its risks. But their conclusion carries a much broader message than just about this one drug:

There is the misperception by the public and many physicians that drugs are "safe and effective" as is often concluded in (approval) randomized clinical trials (RCTs). This phrase suggests, without equivocation or nuance, that drugs work and do not have (serious) adverse effects. The real meaning of this phrase is that a particular drug--for the approved indication, in the approved patient population, and at the approved dosing schedule and administration--has an efficacy profile that warrants being marketed despite its known toxic effects. Or more concisely, at time of approval, the known benefits outweigh the known safety risks. To fully appreciate the benefits of a drug, it should be compared with existing standard therapies and not merely show superior benefit compared with placebo. How a new drug will act and how patients in more complex real-life settings than in those eligible for RCTs (eg, healthy patients) will react is not known and needs to be robustly monitored in postmarketing safety studies that include a large heterogeneous patient population for at least 5 years and are performed swiftly after drug approval so that they may have an impact on clinical care.

Yet, as we've seen, the track record for swift postmarketing safety studies is not good.

That's the American health care industry, as described by The Atlantic in its introduction to David Goldhill's story, "How American Health Care Killed My Father."

It's difficult to choose one worthy excerpt of this fine piece, but I chose this one:

How can a facility featuring state-of-the-art diagnostic equipment use less-sophisticated information technology than my local sushi bar? How can the ICU stress the importance of sterility when its trash is picked up once daily, and only after flowing onto the floor of a patient's room? Considering the importance of a patient's frame of mind to recovery, why are the rooms so cheerless and uncomfortable? In whose interest is the bizarre scheduling of hospital shifts, so that a five-week stay brings an endless string of new personnel assigned to a patient's care? Why, in other words, has this technologically advanced hospital missed out on the revolution in quality control and customer service that has swept all other consumer-facing industries in the past two generations?

I'm a businessman, and in no sense a health-care expert. But the persistence of bad industry practices--from long lines at the doctor's office to ever-rising prices to astonishing numbers of preventable deaths--seems beyond all normal logic, and must have an underlying cause. There needs to be a business reason why an industry, year in and year out, would be able to get away with poor customer service, unaffordable prices, and uneven results--a reason my father and so many others are unnecessarily killed.

Read the entire story.