NCI Seeks New Ways to Improve Cancer Communications

Every 3 years, the National Cancer Institute (NCI) asks researchers, advisory panels, and advocacy groups to recommend "extraordinary opportunities for investment," which it defines as "broad-based, overarching areas of scientific pursuit that hold tremendous promise for significantly expanding our understanding of cancer."

This is the sixth and final article in a series that explores the progress and promise of NCI’s six current extraordinary opportunities: Genes and the environment (January 2002, page 4); cancer imaging (February 2002, page 22); defining the signature of cancer cells (May 2002, page 58); molecular targets of prevention and treatment (June 2002, page 4); research on tobacco and tobacco-related cancers (July 2002, page 9); and cancer communications (below).

BETHESDA, Maryland—Cancer patients and the public have more sources of information available about cancer than ever. As part of its extraordinary opportunities program, the National Cancer Institute (NCI) seeks to understand and apply the most effective communication approaches to provide the most accurate information. Its efforts range from investigating how best to communicate with various age, economic, racial, and ethnic groups to making its own web pages easier to negotiate.

In this interview, ONI Washington bureau chief Patrick Young discusses the challenges of communicating cancer information with Barbara Rimer, DrPH, director of NCI’s Division of Cancer Control and Population Sciences; Gary Kreps, PhD, chief of the division’s Health Communications and Informatics Branch; and Mary McCabe, RN, director of NCI’s Office of Education and Special Initiatives and acting director of the Office of Communications.

ONI: What are the major problems in communicating information about cancer?

Ms. McCabe: The problem today with cancer and health information in general is its complexity and volume, and the potential for inaccuracy.

Dr. Rimer: There are also so many communication channels available. We need to find ways to give people the accurate information they need, when they want it, and in a way that is appropriate and appealing to them. That means that our knowledge of how to manage all of these different channels has to grow. We need to sort out all the complicated information— which even clinicians may not always understand—to help people make informed decisions.

We also have a high level of health illiteracy in this country. Estimates indicate that as many as 40 million people may not have the skills to understand even basic health information. We are about to launch the Health Information National Trends Survey. For the first time, NCI will get information from a broad segment of the public that will help us do a better job of planning communications and evaluating our efforts.

Dr. Kreps: The public in general wants easy answers that tell them exactly what to do. However, issues related to cancer are complicated and don’t translate into sound bites or easy solutions. We need to find ways to provide people options they can understand.

ONI: What is the NCI’s most effective means of communicating with the public?

Ms. McCabe: There is no single most effective way because the Institute has many audiences. We try to determine the best communication patterns for each, based on the message we are conveying. And so we use a variety of communications channels, including the mass media. Our 1-800-4-CANCER number is a resource for the public and health professionals. We have information available in both English and Spanish, and we are working on "quit lines" for smoking cessation information.

We have a long tradition of providing print information to the scientific community and the public about cancer, treatment, prevention, and diagnosis. We continue to make that available, while we increasingly emphasize the dissemination of information through the web.

ONI: What is the Institute doing to specifically improve the information base that will help you and others to better communicate about cancer?

Dr. Rimer: We are trying to better integrate what we have learned from the communication and behavioral sciences. We have teams for different topic areas, such as mammography, where our behavioral research and communication people sit down with outside communication practitioners to think about how to communicate about a particular area.

Dr. Kreps: We also have a large program of research on a variety of different ways to communicate. We are studying strategies for presenting risk information in different formats so that people can better understand it, and different ways of presenting information via the media—the Internet, radio, TV, film, print, telephone, computer-based channels—all the ways that people get information.

ONI: How much do you tailor information to different groups?

Dr. Rimer: Let me be clear. When we say tailor, we mean create individualized information, not target, which we use to mean develop information for different groups. I think the future of communication really lies in individualized communication, integrated with mass media, patient-doctor, and other kinds of communication that target at the mass or group level.

There are mass media messages about cancer designed to hit a large part of the population and then there are messages that come to you through your health care provider. When you want to change a behavior, you get individualized information on how to do that.

Dr. Kreps: We are on the verge of a revolution where people will take more control over their own health care and have access to information specifically tailored to their unique history, background, orientation, and needs. They will be able to seek that information and make more accurate decisions about their own health using their health care providers as advisors to help them.

ONI: Is it important to phrase information differently for men and women?

Dr. Rimer: That is probably not the most important difference. Although differences between men and women are important, we must go beyond this. The key is to understand what people need and want to know, and then adjust our messages based on what is going to affect either the reception of the message or behavior change.

ONI: How about the elderly?

Dr. Rimer: There are some issues that are specific to older people. They are more likely to have multiple health conditions, so when you talk about a health issue, it has to be in the context of those other health problems. The elderly qualify for Medicare and so payment for particular tests and drugs is an issue. There is also a cohort of people who have had particular experiences that are typical of a generation and that has to be appreciated and respected. These issues are challenges to effective communication.

ONI: I understand you plan to make information available throughout the cancer experience, from diagnosis, or before, to death.

Dr. Rimer: We think of it as starting with prevention. At each stage along the way, the NCI, in partnership with other organizations, will provide information both reactively when people want it and proactively when people need information but may be reluctant or afraid to come to us.

ONI: Who are these partners?

Dr. Rimer: There are many. They include the Centers for Disease Control and Prevention, American Cancer Society, NCI’s cancer centers and cooperative groups, community oncology programs, insurers such as Blue Cross/Blue Shield, and HMOs such as Kaiser Permanente.

ONI: How does NCI counter the misinformation on the Internet?

Dr. Rimer: One thing we are very concerned about is understanding how people search for information and getting government sources on the right search engines. People rely on them, yet more and more organizations pay to be listed or categorized in a certain way. It’s a "pay to play" situation, and government websites are at a disadvantage because we can’t pay.

Ms. McCabe: Probably the most effective way that we can counter misinformation is to make our own website—www.cancer.gov—a stronger resource with more information for a variety of audiences. Second, we need to make it better known so people feel that they have an authoritative resource when they need cancer information. I don’t think that countering misinformation on specific websites is even possible, given the number of sites.

Dr. Kreps: We are working with a number of health information sites. We are also trying to do a good job of branding our information so that people know that it is evidence based, and we are trying to educate people about how to evaluate information on the web.

ONI: How does NCI view the role of the popular press?

Ms. McCabe: Thr press is extremely important and a valuable partner in conveying information to the public. It is a resource the public relies on and one that is widely available.

Dr. Kreps: We recently did a collaborative workshop for the Association of Health Care Journalists where we brought in a number of journalists from all over the country to tell them about ways of getting information about cancer. We are also studying the way different entertainment media portray cancer to help improve the quality of that information because people get information from soap operas, dramas, and films.