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According to the Health Information National Trends Survey (HINTS) from the National Cancer Institute (NCI), a large number of Americans are confused and feel bombarded by cancer information. More than 75% agreed: There are so many recommendations for preventing cancer that I don’t know what to do.
The reality? There are five cancer-prevention recommendations for the general public: don’t smoke, exercise, keep a healthy weight, get cancer screenings, and protect yourself from the sun.
Jakob Jensen, PhD, a member of the Cancer Control and Population Sciences Program at Huntsman Cancer Institute (HCI) and assistant professor in the Department of Communication at the University of Utah, believes this public misperception leads to “cancer information overload,” or CIO.
Jensen led a study about CIO’s effect on cancer-related behaviors. He found that the two had a negative relationship. In one example, people who reported CIO were 62% less likely to screen for colon cancer. “They don’t follow the recommendations,” says Jensen. “They feel like there are too many so they give up.”
More reality: people who don’t get colon cancer screening are twice as likely to die from the disease since screening aids early detection.
“It’s so contradictory,” says Jensen, “We live in an era where cancer research has never been better, yet three out of four adults in the United States feel completely overloaded and aren’t participating in cancer prevention and detection behaviors.”
Moreover, when asked to rank cancers by how often the cancer is believed to occur, studies show the public views the prevalence of certain cancers inaccurately, which is influenced by the media. “Cancers seen more frequently in the news are thought to be more common when that is not the case,” says Jensen. Another problem Jensen recognizes is how cancer—and its associated research progress—is presented by the media. “Simply put, we are closer than ever to winning the war on cancer,” he explains. “Yet, many Americans still feel skeptical and scared.”
Why do people feel this way? “It’s an avalanche of information that frustrates the public,” Jensen says. “This suggests a failure to translate and meaningfully communicate research progress.”
In a study he led at the University of Utah, the public was asked to rank cancer survival rates. To his surprise, the rankings were quite accurate.
A few years ago, NCI-funded workshops for health reporters focused on how to communicate cancer mortality statistics. “Is the reason the public is better with cancer mortality [versus prevalence] because journalists are better with communicating cancer mortality?” Jensen wonders. “It’s very possible that the NCI workshops were a successful enterprise.”
Jensen believes the solution to better communicating cancer research progress is getting the media, cancer researchers, and health educators on the same page. “We need a unified strategy that can hammer home a few key messages,” he says.
According to Jensen, this united effort starts with cancer center collaboratives such as the National Comprehensive Cancer Network (NCCN). A not-for-profit alliance of the world’s leading cancer centers—HCI among them—the NCCN aims to improve the quality, effectiveness, and efficiency of cancer research, education, and care by developing best-practice standards and guidelines.
“Cancer centers working together on science and communication strategies is a great first step,” he says. “The second step is to draw in non-profits, cancer-relevant organizations (such as the American Cancer Society), and local cancer organizations. Campaigns from these organizations play a pivotal role in communicating messages to the public and we should all be on the same page.”
Jensen believes conferences where these groups can have open debates about research and recommendations will help develop stricter standards about what to communicate and how.
What is peer review?
Scientific peer review is a quality-control system. It requires all new scientific discoveries and ideas be analyzed and critiqued by other expert scientists in the same field before those discoveries or ideas are widely accepted.
“We need to reinforce the gold standards for cancer recommendation. Emerging science is exciting and excitement makes us want to report about it,” explains Jensen. “The public needs to understand that some findings may not hold true in the end and that’s the tentative nature of research.”
If the realities of the research process—including what constitutes peer-reviewed science versus theory and “hype” along with the progressive nature of research—were communicated more effectively to the public, then people could see that progress is, without doubt, being made every day. Rather than skepticism and fear, the public could feel empowered by research-based recommendations, changing their perceptions and taking action to detect or even prevent cancer.