Survey Will Help NCI Improve Cancer Communications

BETHESDA, Maryland—A national survey, now in progress, will enable the National Cancer Institute (NCI) for the first time to examine the interrelationship of people’s knowledge about cancer, their sources of cancer information, and their cancer-related behavior. The Health Information National Trends Survey (HINTS), a telephone survey of 8,000 randomly selected, representative US adults, began in late October. Data collection is expected to take 5 months.

A major aim of the survey is to make NCI’s dissemination of information about cancer more effective as a means of reducing the nation’s cancer mortality and morbidity. "This is one of the most important activities we have launched because we have never had national data on which to plan communication efforts," said Barbara Rimer, DrPH, director of NCI’s Division of Cancer Control and Population Studies.

Compared with a decade ago, people have more sources of information about cancer, particularly with the advent of the Internet’s World Wide Web.

NCI intends the HINTS data to serve both as a source of needed information and as a baseline for the future. The Institute plans to conduct similar surveys every 2 years, albeit with a different sample of individuals for each survey, and to share its findings widely with other organizations in the cancer field.

"With all the changes going on in communications, particularly in the last 5 or 6 years, we want a baseline," said project leader David E. Nelson, MD, of the Division of Cancer Control’s Health Communications and Informatics Research Branch. "Where are we right now? Where do people go for cancer information; whom do they trust? We want to track this over time to determine if we are getting better in terms of people’s awareness and knowledge about cancer."

Besides establishing baseline data about cancer communication sources, people’s preferences, and their knowledge about the disease, HINTS will help NCI hone its communication priorities, build evidence-based strategies to communicate more effectively, and monitor the effects of its efforts.

Report Card

"We are convinced this is going to provide some information that has not existed before, and provide a report card about what people know about cancer screening, diagnosis, treatment, and prevention," Dr. Nelson said in an interview with ONI.

Survey participants will be asked if they have ever had cancer. The expectation is that the answers will differ between those who have had the disease and those who have not. The survey will also ask whether a person has a personal physician, and how pleased or displeased he or she is with the level of physician-patient communication.

Other questions will probe the participants’ exposure to the media—TV, newspapers, radio, etc—and how much they trust information provided by the media’s various forms. The survey will also explore their use of the Internet, whether they have used it to find information about cancer, and where and how they would prefer to get information about the disease.

Over time, NCI expects HINTS to reveal changes in people’s needs for cancer information, variations in their ways of obtaining it, and new opportunities to supply it. The continuing surveys should also identify changing communication trends. A key desire by NCI is to learn which groups prefer which sources and forms of information, and how best to present facts and helpful material about cancer to them.

"If we find, for example, that 90% of people’s first choice for getting cancer information is their doctor, we might recommend that NCI focus on physicians," Dr. Nelson said. "However, if we find that the first thing 50% of patients do is to go to a website, or have a friend go to a website, then that would prompt us to think carefully about emphasizing the NCI website."

Another series of questions will assess participants’ general knowledge about cancer and its prevention, and their knowledge about specific types of cancer, such as colorectal cancer. Participants will also be asked about such lifestyle factors as smoking, diet, and physical activity.

"We do studies about behavior—how many smoke, how many have mammo-grams, etc," Dr. Nelson said. "And we do surveys that ask people about cancer, and others that ask about what people read and how much TV they watch. But no one has put these three things together, particularly the communications piece with the cancer behavior knowledge
pieces. That is what we are trying to do."

NCI plans to share its findings, including its actual data, with researchers and other groups in the cancer and communication communities. "We have developed a comprehensive dissemination plan, and we are in the process of developing a website and a newsletter," Dr. Nelson said. "We will also go to meetings to present and encourage people to use these data."