Miscommunicating the Mammography Message (Part 1)

A new public opinion poll out today shows a backlash among American women against controversial new breast cancer screening recommendations. Three-fourths of those participating in the USA TODAY/Gallup Poll said they disagree with the experts' advice and even more younger women said they will disregard it.

The cacophony of angry, confused, accusatory reactions continues to drown out the fundamental message that a prestigious science advisory panel unsuccessfully attempted to deliver last week: namely that individualized, informed decision-making should replace blanket guidelines for universal, routine mammography screening of women in their 40s.

"I really think that mammography screening should not be one size fits all. We need to personalize the decision for each woman," said Dr. Karla Kerlikowske, a primary care physician and mammography-screening expert at the University of California, San Francisco, whom I talked with yesterday. Women at higher risk of breast cancer might be counseled to start screening mammograms in their 40s, while those at lower or average risk generally would not.

The intention of the U.S. Preventive Services Task Force was to widen the choices available to a woman under 50 in terms of mammogram timing and frequency, helping her better understand and decide based on the full range of testing benefits and risks in the context of her overall health. Instead, its poorly delivered message was unfortunately--and I think unfairly--perceived by some as a cost-cutting smokescreen that could limit women's choices and potentially risk their lives.

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Similarly, although there was strong consensus in support of regular mammogram screening in women ages 50 to 74, the reasoning behind the panel's recommendation that testing be done every two years was widely misunderstood. The decision came down to every two years, instead of annually, in order to maximize benefits and reduce unnecessary harms to those at average risk.

The blame lies squarely in the hands of the government-appointed medical and public health experts who missed a major opportunity to translate their important findings into useful, easily available information that women, and their doctors, could use to make more informed choices (not to mention the media struggling to report the story).

The independent advisory group to the federal Agency for Healthcare Research and Quality carefully sifted through mountains of scientific data, commissioning new statistical models and a sophisticated analysis of the latest studies. But in the end they failed big time in terms of risk-benefit communication to the audience that really mattered--the public.

The new telephone survey of 1,136 women showed that many greatly overestimate their own risk of getting breast cancer, and that most felt the panel based its recommendations on cost, even though cost was explicitly not part of the panel's assignment.

We can all agree that the breast screening announcement suffered from extremely poor timing--and perhaps a tin ear to the hopes and fears of those who wear the powerful pink ribbon that symbolizes the most feared cancer killer of women. The scientists, the government agency that appointed them, and the medical journal that published their findings helped create the public relations catastrophe by failing to better anticipate how negatively the affected constituencies--including millions of American women and their doctors--might react to the news.

It's easy to see why women and their supporters quickly rose to the defense of routine screening mammograms for younger women as an important weapon in their impassioned, frustrating fight against breast cancer. Not to mention those who capitalized upon the announcement as an opportunistic partisan sound-bite by connecting it to the country's raging health care reform debate or who derided the conclusions of the expert panel of 9 men and 7 women as sexist. Others suggested the apolitical panel was naïve about the politicized atmosphere in our nation's Capital. Not surprisingly, many in the media quickly played up the controversies rather than really digging into the obscure, difficult-to-understand numbers.

Nonetheless, this communications disaster could potentially have been avoided if the scientific experts had sought advice about how to craft a meaningful public message about a complex public health problem. In doing so, they needed to separate the issue into two distinct categories: 1. The overall population, or societal impact--what does the recommendation mean for the public at large? 2. The individual impact--what does the recommendation mean for the individual consumer? The answers, as is often the case in medicine, are a combination of science, values, and public perception and may differ depending on who is asking the question.

But equipping women and physicians with the most relevant evidence for making personal decisions is the best place to start. Far more needs to be done in this regard. I agree strongly with Dr. Kerlikowske and her editorial in the Annals of Internal Medicine, the scientific journal that published the new recommendations. Kerlikowske, who was not a member of the advisory panel, urged doctors, mammography centers, and researchers to increase efforts to tailor screening and other breast cancer prevention efforts toward the individual risks a woman faces at various stages of her life.

Unfortunately, time to counsel patients is still the most limited commodity in the current health-care system, a problem that deserves more attention in discussions of health system reform.

In the meantime, scientific and medical groups working on sensitive public health recommendations should learn a lesson from the brouhaha generated by the latest breast cancer screening recommendations.  They need to realize that their work is not done when they complete expert deliberations to assess and manage a complicated public health problem and publish their findings.

Equally important--but perhaps the hardest part of the job--is to communicate more effectively with the public as well. Regrettably, the distinguished scientific panel failed miserably on that front.

NEXT: Making Sense of Mammography Numbers (Part 2)

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