A Backlash of Mistrust Ellen Goodman

BOSTON — Is there such a thing as communications malpractice? If so, we might consider the case of Women v. the U.S. Preventive Services Task Force.

I’m not talking about medical malpractice. The scientists who surveyed the mammogram studies did their job honorably. They looked at research that has slowly and without a lot of fanfare questioned the value of routine mammograms for women in their 40s without other risk factors. They concluded — as had others before them — that the benefits from screening younger women were oversold and the risks were undersold.

They went on to recommend that women start having mammograms at 50 and then have them every other year instead of annually. But then they dropped these guidelines onto an unprepared public like leaflets from a helicopter of experts who didn’t understand the conditions on the ground.

There was something charming about the innocence of the independent task force. Did the scientists assume the public would just accept the information as given? Or, should I say, as revised? Anyone who has spent time in a waiting room with women taught to equate early detection with prevention could have warned them.

Within hours, stories poured in from women who deeply believe “my life was saved” by an early mammogram. Then came suspicions about what new guidelines would mean to their insurance providers. Women recoiled as well from an analysis that listed “anxiety” as a risk component of early mammograms — as if they couldn’t handle a little A in preference to a big C.

If the experts didn’t realize how women would react, they were truly disconnected from the poisonous political atmosphere around health care reform. Quickly and deliberately, politicians turned “recommendations” into “rationing.” As Rep. Marsha Blackburn darkly warned, “This is how rationing begins. This is when you start getting a bureaucrat between you and your physician.”

Not surprisingly, the Obama administration backed away from the recommendations as fast as Kathleen Sebelius could say, “This panel was appointed by the prior administration.”

In fairness, the independent body of experts was charged with keeping science away from politics. And it wasn’t allowed to consider costs. But the end result was a kind of tone-deaf naivete.

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.”

This was never going to be an easy message. The breast cancer research is more complex and controversial than the cervical cancer research that was released just days later with recommendations to delay and reduce pap smears. But nevertheless, this perfect storm created a perfect case on how not to deliver a public health message.

It’s important because — and I say this as someone whose mother, aunt and sister have all had breast cancer — the task force had a strong story to tell. The benefits of mammography for younger women have been oversold. As Laura Nikolaides of the National Breast Cancer Coalition and a cancer survivor says, “People have been doing mammography as a security blanket: If you have a mammogram, you won’t die of breast cancer. We wish that were true.” The biology of the tumor — how aggressively it grows — is now judged more important than the size at which it was discovered. And the terrible reality is that we haven’t done much to change the survival rate of younger women who get this disease.

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.

So now we have a cost-benefit analysis for medical miscommunication. The evidence so far points to a backlash of mistrust. Memo to the next panel: Remember the old Hippocratic oath, first do no harm.