The Cancer Risk Communication Meeting in Perspective

Abstract

The National Research Council (1) defined risk communication as an interactive process of exchange of information and opinion among individuals, groups, and institutions. It involves multiple messages about the nature of risk and other messages, not strictly about risk, that express concerns, opinions, or reactions to risk messages or to legal and institutional arrangements for risk management. When applied to cancer, this is a useful working definition of risk communication. Cancer risk communication is a vital topic for many groups, including the media, health care professionals, researchers, and, of course, the public. Media professionals are faced daily with the need to communicate risk. Nowhere were the challenges and repercussions of cancer risk communication more apparent than when we have attempted to communicate the lifetime risk for breast cancer (the well-known one-in-eight number). As Bunker et al. (2) recently stated, people do not understand the idea of lifetime risk. They also do not understand that the average risk is modified by a number of individual factors, such as age and family history of cancer. This points out one of the important problems in communicating cancer risk information. People have trouble understanding numbers, especially when the numbers are probabilities. But perhaps even harder is communicating the concept of competing risks. For example, women focus so much on breast cancer risks that they underestimate the risks of heart disease and lung cancer. Risk communication may be made harder by the influence of certain advertisers (e.g., tobacco companies). A survey by the American Council on Science and Health (3) showed that the risks of smoking tend to be downplayed in women’s magazines. The survey found that articles on tobacco represented fewer than 1% of all health-related articles. No wonder people have problems perceiving tobacco-related risks correctly. Recently, Nelkin (4) argued, “The media response to research reports about health risks suggests that efforts to reach the public must consider the important differences between lay and professional understanding of certain concepts. To scientists, evidence is a statistical concept, and the focus is on aggregate data. But to laypersons—and many journalists—anecdotal information and individual cases are also compelling evidence. The media focus is on the immediate concerns of readers. Will I be harmed?” Balancing these different perspectives about scientific evidence is an important challenge of cancer risk communication. Researchers are grappling with a number of important questions related to cancer risk communication, including the following: What is the role of risk perceptions in cancer-related behaviors? What effects do risk communications have on decision making and behavior? How do we communicate risk in numbers, words, and graphics? Practitioners are faced with patients who may want to know their own risk of breast cancer and what they can do about it. Other patients (e.g., those who smoke) may want to avoid discussion of risk. And, of course, the possibility of testing for genetic susceptibility to cancer raises many other patient questions about risk. This meeting was designed with the ambitious goal of trying to bridge the communication perspectives of researchers, the media, and practitioners. We planned to emerge with a clearer understanding of what we know about cancer risk communication and what we need to know to bridge what often seems like a chasm between research and practice. That is why we asked the participants to focus on the two questions: 1) What do we know? 2) What do we need to know about cancer risk communication? The importance of this topic was highlighted in a recent report by the Institute of Medicine and the National Research Council (5) that dealt with recommendations for people exposed to iodine-131. The committee suggested that the U.S. Department of Health and Human Services (DHHS) consider funding research to develop a better understanding of how people perceive the benefits and harms of cancer screening and how those perceptions are affected by different ways of presenting quantitative information and different ways of structuring patient–clinician communication. They emphasized that DHHS would be well served by efforts to understand better how individuals make judgments about risk situations and, more specifically, how they use information to do so. This is a useful statement of research needs for the broader field of cancer risk communication as well as the specific case of iodine131. This meeting of some of the United States’ leading researchers and communicators represents an important opportunity to advance both the research and the practice agendas related to cancer risk communication. Our goals, after all, are more similar than different—to improve the communication and comprehension of cancer risk.