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PR Advice To Medical Panels: Fight Stories With Stories

The Russian legend of The Princess Frog
The Russian legend of The Princess Frog

Hear, hear. A paper in the prestigious Journal of the American Medical Association today calls on scientists to fight stories with stories.

That is, in the service of more powerfully conveying what research actually shows, they should no longer shy away from "anecdote" just because it lacks statistical power. They should use stories of real people that illustrate evidence-based points in order to convey information better to the public.

The paper begins with a federal panel's recent controversial recommendations against routine prostate screening for healthy men. Celebrities from Rudy Giuliani to Joe Torre fought the recommendations using that most powerful of weapons, their own personal stories, in which they attributed their survival to screening.

Panel members, in contrast, tended to explain their decision with numbers, not stories. They did not offer heartbreaking tales from men left incontinent, impotent or otherwise harmed — though goodness knows, they would not be hard to find. And that data-driven high road, the JAMA paper argues, tends to lead to defeat.

"Each time, those who espouse only evidence — without narratives about real people — struggle to control the debate," the authors write. "Typically, they lose."

They offer a vivid example of how to fight a story with a story, a "counter-narrative" that uses an anecdote  to parry an unscientific argument:

Take the largely negated theories of a causal link between childhood vaccines and autism. As recounted by Offit in his book on this topic, a celebrity actor claimed that she does not need real science to know that the measles-mumps-rubella (MMR) vaccine triggered her son's autism: “[My son] is my science,” she stated on television to thunderous audience applause. Such narratives, challenging scientists who come to the table (or television studio) armed only with data, often succeed in the court of public opinion and weaken efforts to promote evidence-based health decisions.

[module align="right" width="half" type="pull-quote"]The public needs to hear the stories of patients, and their families, who encountered a drug that offered hope but was ultimately ineffective and even dangerous.[/module]

When scientists encounter stories that promote unscientific approaches to health and health care, they should deploy an evidence-based counternarrative. The story of a mother in San Diego whose infant, too young for the MMR vaccine, became sick after exposure to an unvaccinated child with measles would add persuasive weight in a debate with the actor mentioned above.

These counternarratives may also be useful when the evidence addresses individual risks as well as effectiveness. The FDA's decision to remove breast cancer as an approved indication for bevacizumab was based not only on the absence of evidence to support its effectiveness in a general population but also on the relatively high risks of serious individual adverse effects, including death. In such cases, real and personal narratives can be told that embody, with characters and action, the evidence of a risky intervention. The public needs to hear the stories of patients, and their families, who encountered a drug that offered hope but was ultimately ineffective and even dangerous.

The authors, Drs. Zachary Meisel and Jason Karlawish, both of the University of Pennsylvania, argue that data-based narrative can also help when, say, a panel is about to put out some controversial guidelines.

It could increase public trust in the recommendations, they say, if the panel's report includes a story line something like: "We started with what we knew, we looked at the evidence, we revisited our hypotheses, we argued about the findings, and ultimately we acted here and now because it was prudent, but there are more data to come, and here is what we plan to do as we learn more."

That sounds like good advice for both the United States Preventive Services Task Force, with its controversial but data-based cancer screening recommendations, and the FDA, which recently took flak over a breast cancer drug. And more narrative help from researchers would surely help us hapless journalists tell the stories better, too.

This program aired on November 9, 2011. The audio for this program is not available.

Carey Goldberg Twitter Editor, CommonHealth
Carey Goldberg is the editor of WBUR's CommonHealth blog.

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