Forum on Clinical Trials and Public Perception Focuses on the Role of the Media

Kristine M. Conner
OncoLink Medical Correspondent
Last Modified: May 23, 2000

"No disease has been cured as many times as cancer has." -Ellen Stovall, National Coalition for Cancer Survivorship (NCCS), quoting Rick Weiss of The Washington Post

The media plays a pivotal role in shaping public perceptions of cancer clinical trials, since this is where most people get their information about health and medicine. What gets reported and how it gets reported were the main topics of discussion at a Tuesday ASCO forum devoted to considering media coverage of clinical trials. Moderated by Fran Visco of the National Breast Cancer Coalition, the panel included Ellen Stovall of NCCS, Dr. Larry Norton of Memorial Sloan Kettering Cancer Center in New York City, and journalist Shannon Brownlee, formerly of U.S. News and World Report. Ms. Brownlee, who has spent ten years writing about cancer research, co-authored the October 11, 1999 U.S. News feature "Dying for a Cure," which highlighted negative experiences of clinical trial participants and ethically questionable practices by researchers. As the three panelists shared their different perspectives on this topic, it became clear that the media's desire for an "angle" or compelling story often conflicts with the very nature of clinical trials, which are part of a gradual, cumulative process that does not lend itself to "sound bite" reporting.

Ellen Stovall began her talk by citing a telling example of the media's coverage of the ASCO conference itself. That very morning, as she was getting ready for her presentation, she heard two promotions - one on the local news, one on the national - for stories about a "miracle drug for lung cancer" and a "new breakthrough for lung cancer." She suggested that she could just imagine what the actual news segments would be like: they would focus on the success stories without doing justice to the full complexity of the trial's results. But focusing only on the negative, as Ms. Brownlee's story did, can be equally harmful, Stovall stressed. The cover of the October 11th issue of U.S. News featured a skull and crossbones with the article title, "Dying for a Cure," emblazoned across the front. That horrifying visual, said Stovall, left people with an impression of clinical trials that is difficult to correct, no matter how reasoned the argument.

"This is a common trend," said Stovall. "These sound bites come at us on a daily basis," often leaving people feeling confused and disoriented. Stovall said that she would like to see the media "abandon hyperbole" and report trials more like sports events are covered - that is, play by play, with a full accounting of the various events that were behind the outcome. "Where is the health and medicine page that looks like the sports page?" she asked.

Stovall pointed to the results of the recent Harris Survey on attitudes toward clinical trials as evidence of the wide misunderstanding that exists. The survey used both phone interviews and the Internet to poll over 6,000 people with cancer and nearly 700 healthy people about their opinions of trials. "The vast majority of patients - 84% - were unaware of clinical trials as a treatment option," noted Stovall, "and about one-third said they did not take part in a trial because they believed that standard care would be more effective." At the same time, though, most people who did take part in clinical trials (96%) said they had a positive experience.

A cancer survivor herself, Stovall has experienced the importance of clinical trials firsthand. When she was diagnosed with Hodgkin's disease in 1971, she was considered ineligible for a new drug trial because she had just given birth. Thirteen years later, when her cancer recurred, she was treated with the very drug that was being evaluated in that clinical trial. "This has led to my interest in quality clinical trials," said Stovall. "The interface between clinicians and patients is a critical juncture," she stressed, and since the media most often fills that space, it is essential that they provide balanced information.

Dr. Larry Norton of Memorial Sloan Kettering Cancer Center, a breast cancer specialist who is actively involved in clinical research, largely agreed with Stovall's assessment of the media's reliance on hyperbolic sound bites instead of reasoned discussion. As an expert who is often quoted by the press, Dr. Norton said he finds that "quotable statements make the news," no matter how balanced a perspective he may have tried to present during the interview. He cited the example of the recent controversy over the use of bone marrow transplant as a treatment for breast cancer. "There were rational people saying rational things," said Dr. Norton, "but those people weren't quoted."

Like Stovall, Dr. Norton said that he would like to see stories about clinical trials reported as sports or even business and politics are - as "news rather than feature." Too often, he noted, a trial is reported as a "snapshot in time without a sense of evolution." Reporters want to create features out of a study's results without acknowledging the full context that surrounds it, thereby working against the nature of science. "The media wants to create heroes," said Norton, "and that's one of the worst things that can happen in science."

Reporter Shannon Brownlee agreed that there is often a tension between the media's need to create compelling, readable stories and the nature of scientific research. "Journalists need a hero to make the story readable," said Brownlee in response to Dr. Norton's comment, and that has led to some of the "hyping" of clinical trials that has taken place. For the ten years that she has spent writing about cancer research, she said, most of her stories have put a favorable slant on clinical trials. Brownlee noted that she wrote many hopeful stories about the beginnings of clinical trials, many of which did not lead to improved outcomes or treatments. From her perspective, the real problem with media reporting is not just hyperbole, but an overall slant in favor of researchers' work.

"There's been a good amount of cheerleading for clinical trials that has gone on," she said, "and that's not what we're supposed to be doing. We have a different role than advocates and researchers; we need to look for an independent perspective."

Brownlee acknowledged the media's role in hyping bone marrow transplant as a possible cure for breast cancer over the last couple of years, even though the data was not there to support this. "Advocates turned this into a woman's issue, protesting when insurance wouldn't pay for it, and journalists ate up these women's stories," she noted.

When Stovall questioned her about the cover image choice for her "Dying for a Cure" story, Brownlee admitted that she "wasn't completely comfortable with it." But she did stand behind her story, carefully emphasizing that it was really the first negative feature she had done after ten years of covering clinical trials in a positive light. Nevertheless, she said, she received a good deal of "hate mail" accusing her of destroying the possibilities for future progress against cancer. Dr. Norton was quick to add that, as a researcher who conducts clinical trials, he received hate mail and death threats in the wake of Brownlee's article, often from the families of women who had participated in his trials.

Despite Dr. Norton's and Ellen Stovall's calls for a different kind of reporting by the media, Brownlee seemed to think that things would not change much. She emphasized that journalists face the pressure of creating stories that have an angle which intrigues the potential reader; magazines and newspapers have to sell to stay afloat, just as television news programs need to attract viewers. "The 'wow, gee-whiz' things get a lot of press," she said matter-of-factly. Brownlee suggested that the best solution would be to create another source of information about trials, such as a centralized Web site, that could present results and data without an editorial slant. The National Cancer Institute has such a site for federally-funded trials, and several drug companies have their own sites, but Brownlee said that she would like to see one resource available to information-seekers.

In the meantime, cancer patients and members of the general public need to be careful consumers of media information. During the question-and-answer period, one health care professional stood up and said that she already knew what she would be doing back at her office next week: fielding questions about the supposed new breakthrough treatment for lung cancer. No matter how compelling individuals' stories may be when reported by the media, people need to look at the overall picture to form accurate impressions of clinical trials. As Dr. Norton stressed, "One patient does not make a scientific discovery."