Advancing Discovery and Its Application

Cancer Communications

The Opportunity

From primary prevention to survivorship and end of life, only communication can enable people to make informed cancer-related decisions and adopt behaviors to improve their health. Surveys of the public, patients, and health professionals show that the NIH and NCI are among the most trusted, valued, and respected sources of health information. The explosive rise of the Internet continues to fuel the demand for accessible health information, and this demand, in turn, feeds the Internet's growth, as documented in this study from the Pew Research Center. Yet, substantial research reveals gaps between the information people want and what they receive. Moreover, as in other areas of life, people with less income and education are also disadvantaged with respect to health communication. This is especially evident with patient-provider communication. For example, a recent survey showed that while 57 percent of all adult participants said they find it very easy to comprehend written materials from a doctor's office, only 39 percent of adults with less than a high school education said they find such materials understandable.

NCI leads our Nation's cancer communications research and development efforts and plays a central role in delivering vast amounts of information every day. The research focuses on how people inform, persuade, relate, and influence each other in various contexts and cultures, using a variety of channels and media, for good or for ill. The NCI Extraordinary Opportunity initiatives in Cancer Communications are firmly grounded in communication science.

NCI funds many of the Nation's most innovative and rigorous health communications researchers. They are engaged in understanding the process of health communications and the needs of different audiences. They are also building a substantial storehouse of effective communication strategies that are saving lives through interventions that:

• Decrease smoking;
• Increase the proportion of people who eat five or more servings of fruits and vegetables a day; and
• Increase the numbers of people who are screened for breast, prostate, cervical, and colorectal cancers.

But where we are in communicating about cancer is not where we want to be. We must learn more about the science of communication and more rapidly translate successful intervention research into practice. In particular, we must apply what we have learned to improving the health of underserved populations.

As in other areas of medicine, we must gain access to and evaluate new communications technologies while they are under development and not after they have been rendered passé by the evolution of technology and the marketplace. Then, we must provide access to evidence-based interventions. This will require new partnerships with the private sector and extremely rapid funding mechanisms to reduce the time between generation of ideas and their application.

Communicating science-based information about cancer poses challenges, opportunities, and responsibilities. In this new communications century, our ability to use multiple methods of communication designed to reach specific audiences and individuals is likely to produce greater impact than any single approach. And we must synchronize and harmonize our messages with those of other agencies to produce synergy and to be comprehensive, accurate, and consistent with our messages.

We understand that for every person who needs information about cancer, for every patient and family member who receives the diagnosis of cancer, the experience is individual and unique. Our increasingly refined capacity to tailor messages can help translate science into useful information for people through an ever-expanding menu of communication choices that parallel the ideal communication between healthcare providers and patients and their families. New technologies and tools should extend but not replace one-to-one communication between healthcare providers and their patients.

Our greatest challenge in cancer communications is to find ways to speed the process from discovery to dissemination to assure that every person gets needed information at the appropriate time, in a form that is comprehensible and useful as well as culturally and linguistically appropriate. This is our challenge. Working with partners, it also is our responsibility.

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Progress in Pursuit of Our Goal

We have made considerable progress toward our cancer communications goal in support of each of our objectives.

Establishing New Data Collection and Analysis Strategies

Health Information National Trends Survey (HINTS). HINTS, the first national health communications survey, will collect nationally representative data every two years from 8,000 randomly selected adults about the public's need for, access to, and use of cancer-related information. Examples of survey topics include the individual's requirements for cancer information, knowledge about cancer, attitudes and beliefs about cancer screening, and cancer-related health risk behaviors. Over the past nine months, NCI has obtained extensive input on the survey contents from a variety of experts. The first survey will be fielded in late 2002. Data analysis will take place immediately after, with preliminary data available within two months. NCI staff are developing protocols to assure that the scientific community has rapid access to the data and that some reports are created especially for lay persons. In future surveys, we plan to also collect data on cancer survivors' use of different media, their risk perceptions, cancer-related behaviors, personal cancer experiences, and perceived communications needs. We are also studying the feasibility of Internet data collection for this survey.

Survey on Women's Reactions to the 2001-2002 Mammography Controversy. Amid the controversy on the efficacy of mammography as a life saving measure this past year, NCI quickly mounted an omnibus survey to assess women's reactions to it. Survey results showed that women with lower levels of education and income were more likely to be confused and less likely to have good sources of information about mammography. Most participants indicated that they plan to continue to get mammograms in spite of the conflicting evidence, and respondents who said they had enough information to make a decision were more than three times as likely to plan on getting screened than women who said they did not have enough information. These findings will inform our future communications planning in this area. We are also planning an international research effort.

Accelerating the Pace of Research and Development of Interventions

Research on Patients' Cancer Information Needs. NCI-funded researchers are assessing the changing information needs of cancer patients undergoing chemotherapy and radiation therapy. More than 800 patients have been recruited from 18 physician practices, with another 200 patients anticipated in 2002. The patients have varied cancer diagnoses, including breast, genitourinary tract, lung, hematologic, and gynecologic. Participants are being surveyed prior to, upon completion of, and six months after their treatment. Study results will help NCI assess the communication concerns, problems, patterns, and needs of newly diagnosed patients across active treatment and the early recovery period.

Patient-Doctor Communication. NCI convened the Consumer-Provider Communication Research Symposium in January 2002 to bring together eminent scholars from a broad range of disciplines to identify major gaps in the research literature. Gaps identified include the need to better understand the roles played by caregivers other than doctors and the nature of their interactions with patients, the changing relationship between patient and doctor, the use of diverse settings and channels, and the need for improved research methodologies. Participants also concluded that we need to incorporate new study strategies such as surveys and longitudinal data collection techniques.

Centers of Excellence in Cancer Communications Research (CECCRs). NCI is funding interdisciplinary centers to focus on the advancement of cancer communication science using new and/or improved syntheses, theories, methods, and interventions.

Interdisciplinary Training. NCI is developing and marketing collaborative training and career development opportunities for health communication researchers and practitioners.

Increasing Access To and Use of Cancer Information

Digital Divide Pilot Projects. Four demonstration projects were conducted in collaboration with NCI's Cancer Information Service (CIS) to identify effective new strategies for providing underserved populations with access to relevant online cancer information. Two of the projects have been completed. Evaluation data from one study show that culturally sensitive computer-training workshops were successful in making participants comfortable using the Internet as a cancer information-gathering source. In another study, an assessment suggested that the program increased knowledge about computers and their use and about cancer and its prevention. Actual computer use also increased, including the level of health information seeking via the Internet three months after training.

Enhanced NCI Databases and Web Sites, Especially for Clinical Trials Information. NCI launched cancer.gov, an improved Web site that combines the information formerly available on NCI's CancerNet and cancerTrials sites in user-friendly topical formats. The search engine provides faster access to more precise information about cancer. The first four months following launch saw use increase more than 30 percent.

Delivery of Evidence-Based Interventions. In an effort to promote the adaptation and adoption of evidence-based interventions, NCI revised Clear Horizons and the Guia para dejar de fumar (Guide to Quitting Smoking) as part of a smoking cessation project targeted to Medicare beneficiaries in collaboration with the Centers for Medicare and Medicaid Services. Both projects were based on NCI-funded intervention research. Clear Horizons was developed for English-speaking adults over 50. The Guia was originally developed for a diverse Hispanic population. Key components of the Guia that were linked to smoking cessation included graphic photographs of the physical effects of tobacco use, a family-oriented health emphasis, and a format that was culturally appropriate for diverse Hispanic audiences. Approximately 10,000 copies of Clear Horizons and 400 copies of the Guia are being distributed.

5 A Day for Better Health Program. 5 A Day for Better Health is one of the most widely recognized health promotion messages in the world. More than 35 countries have developed programs to increase fruit and vegetable consumption using the 5 A Day for Better Health Program as a model. The program - a noteworthy example of government agencies working together with private industry, voluntary health organizations, and advocacy groups - is the largest public-private partnership for nutrition in the United States. The Department of Health and Human Services (HHS), including NCI and the Centers for Disease Control and Prevention, and the U.S. Department of Agriculture (USDA) recently signed an agreement to formalize and expand their commitment to promote the 5 A Day message nationwide, and particularly, in American schools. USDA has made a substantial contribution to help increase the amount and choices of fruits and vegetables in school cafeterias. Lauded for its creative and educational communication campaigns, the 5 A Day for Better Health Program won two distinguished awards in 2001. Getting to the Roots of a Healthy Holiday, targeted to underserved populations, received the 2001 Toth Award for Best Multicultural Campaign and the 2001 Silver Inkwell Award for Communications Campaigns.

Cancer Information via Instant Messaging and E-mail. An NCI Cancer Information Service (CIS) pilot of LiveHelp, which uses instant messaging technology to provide real-time responses to cancer inquiries on NCI's Web site, concluded in December 2001 with three regional CIS offices successfully offering this service to the public. These offices now provide LiveHelp as a standard CIS service, averaging 1,000 user sessions per month. CIS plans to pilot LiveHelp again as part of NCI's smokefree.gov Web site, scheduled for launch in 2002. In March 2002, one CIS regional office began piloting the use of e-mail to respond to inquiries received through the cancer.gov and CIS Web sites. An average of 390 e-mail communications are received monthly, primarily through cancer.gov. The CIS LiveHelp service and e-mail pilot have expanded NCI's reach internationally. The number of CIS offices providing these services will continue to increase based on public demand.

Communicating With Science Writers. NCI introduced a new seminar series to educate journalists about cancer research topics and to encourage interaction with NCI experts.

Making Quality Count for Consumers and Patients. As part of a joint NCI and Agency for Healthcare Research and Quality initiative, researchers were funded to develop and evaluate a primer to help people use numbers in health. Three basic risk communication tools will supplement the primer: cancer risk charts, prevention benefit charts, and standard disease summary templates. The researchers are revising the primer based on qualitative interviews and have completed a pilot study of the new survey measures they developed for testing the primer.

Facing Forward Series. NCI has developed an education program to equip patients, families, and healthcare providers with information about what to expect post-treatment. The first book in the series, Life After Cancer Treatment, combines information from research and survivors themselves about the physical, emotional, and social impact of cancer and how to manage needs and concerns after treatment ends. The second volume, Ways You Can Make a Difference After Cancer, guides those interested in getting involved or giving back through cancer support, advocacy, and research. Publications on cancer survivorship issues for health professionals and family care are planned for 2003.

Low-Literacy Communications. NCI researchers are studying how to communicate with low-literacy populations. Lessons learned will be synthesized with an understanding of the needs of low-literate populations to develop an actionable strategic plan and program. NCI currently offers low-literacy materials on the topics of pain and clinical trials. Additional publications are underway for healthcare providers, patients, and families.

Improving the Science of Dissemination and the Dissemination of Science

NCI-Funded Evidence-Based Interventions. In a groundbreaking partnership, NCI has collaborated with the American Cancer Society (ACS) to adapt two successful NCI-funded intervention studies to create Body & Soul: A Celebration of Healthy Living, a nutrition program to be delivered through African-American churches. NCI and ACS also developed the Body & Soul Program Guide, which assists regional ACS offices in enrolling participants and conducting the program. Currently, the pilot program is operating in 15 churches (1047 participants) in three ACS regions. The project has exceeded expectations for conducting intervention research in a real-world setting. Eighty-eight volunteer advisors were trained in motivational interviewing, one of the major intervention strategies, with a 73 percent pass rate via a rigorous, valid, and reliable certification process. The program is an example of effective research dissemination to communities, as well as successful research collaboration between NCI and ACS.

Dissemination of Effective Interventions. NCI funded the dissemination of two promising intervention programs and products: Sunny Days, Healthy Ways, Grade 6-8 Sun Safety Curriculum, and 5 A Day for Better Health dissemination. In the first project, researchers will compare the efficacy of disseminating Sunny Days to public elementary schools and licensed childcare facilities in several areas and test whether dissemination is improved by providing Web-based training and technical support. The 5 A Day dissemination study includes a theory-driven, "best practices model" with six CIS offices nationwide and a plan to extend this intervention as a usual service program to all 14 regional offices of the CIS network.

NewMediacy. This new NCI mailing list has summaries of and links to the latest communications-related data and reports, providing public-sector access to timely, high-quality communications-related data and reports from the private sector. Important findings include data on doctor-patient communications and on the public's use of online health information. Providing rapid access to this information may decrease the need for groups to collect duplicative data, often wasting precious time and money in the process. Launched in January 2002, NewMediacy now has almost 300 subscribers.

NCI-AAFP Collaboration to Educate Family Physicians about Cancer. NCI began its partnership with the American Academy of Family Physicians (AAFP) in support of its Annual Clinical Focus. The program aims to bring AAFP members state-of-the-art clinical information on a different topic each year. This year's focus is on cancer treatment and care. In 2003, the focus is prevention, and in 2004, genetics. This year, NCI experts reviewed and offered content suggestions on a video, "Cancer: Supporting Patients and Families," and a monograph, Cancer Care in Family Practice. The video was distributed in January, and the monograph was published in June.

Consumer Research and Evaluation Reports. A searchable database of consumer research and evaluation reports produced in the NCI Office of Communication (1982 to present) expands upon the existing Market Research and Evaluation compendium. The database will allow users to search by selected variables, such as audience characteristics, when developing and evaluating communication plans and products.

Designing for Dissemination Conference. NCI, in partnership with the Center for the Advancement of Health, the Robert Wood Johnson Foundation, and the NIH Office of Behavioral and Social Sciences Research, is sponsoring a conference on what we know, what we need to know, and what we need to do to accelerate the adoption of evidence-based cancer prevention and control interventions.

The Plan - Cancer Communications

Increase knowledge about, tools for, access to, and use of cancer communications by the public, patients, survivors, and health professionals - with a special focus on diverse populations - to accelerate reductions in the U.S. cancer burden.

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New Cancer Communications Efforts Further Accelerate Discovery to Delivery

Effective communication is critical all along the corridors, from discovery in the laboratory to development of new drugs and other interventions to delivery of those interventions in the clinic. With adequate funding in Fiscal Year 2004, we can continue and expand current efforts while implementing new initiatives.

• New public surveys to assess reactions to media coverage about cancer will aid us in communication planning and evaluation, especially in evaluating the public's reaction to controversial coverage.
• New training workshops and toolkits about cancer science for journalists will enhance the quality and quantity of media coverage about cancer.
• NCI's International Breast Cancer Screening Network, a voluntary consortium of 25 countries, will develop best practices for their international population-based screening mammography programs and standardize and summarize existing information and decision tools for all member countries. We will also develop, administer, and summarize for peer reviewed publication a standard set of questions about women's communication needs.
• We will partner with the National Science Foundation or the National Institute of Mental Health to conduct basic communications research that will accelerate discoveries about how cancer information is processed and used. Investigators will seek to answer important questions about the effects of stress and affective computing on an individual's information processing (e.g., communication about risk). In addition, such research may employ new tools, like fMRI or computer-based physiological measures.
• Applied communications studies will test how integrated electronic and interpersonal communication systems can improve decision making, facilitate positive changes in health behavior, and improve health.
• A New Media Collaborative will develop theory driven definitions of the active ingredients in tailored communications, agree on common measures, identify a minimum set of essential core mechanisms, and conduct process-to-outcome analyses. In addition, NCI will conduct research and development on innovative dissemination strategies.
• The FAST (Facilitate and Accelerate Science and Technology) Track Funding program will be employed to overcome current system barriers that result in long delays in moving ideas to innovative technologies and funding.
• New research on doctor-patient communications will provide doctors, other health professions, and patients with practical strategies for dialogue, identify ways to maximize use of the Internet for doctor-patient communication, and examine the use of mediated communications to help patients cope with cancer. These efforts will include a special focus on minority and underserved patients.
• A collaboration between the U.S. Department of Health and Human Services and the Department of Agriculture led by NCI will build 5 A Day for Better Health partnerships to further the 5 A Day message in American schools and target underserved populations with segmented communication campaigns.

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