In Brief
2001 Budget Request
Scientific Priorities for Cancer Research
Infrastructure Needed for Cancer Research
How We Work
Other Ways to Get This Information
Cancer Information for Patients and Health Professionals
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Scientific Priorities for Cancer Research: NCI's Extraordinary Opportunities
Cancer Communications
Introduction
We are in the midst of a communications revolution unparalleled since Gutenberg introduced movable type to the western world in the 15th century. At no other time in history has it been so easy for so many people to access such a vast wealth of information. In particular, the Internet has multiplied exponentially our ability to make large amounts of information available to a wide audience quickly and easily.
Communication is central to effective, quality cancer care, from primary prevention to survivorship and end of life issues. Communication empowers people; it can raise awareness of health problems and recommended actions, and give people the information they need to make informed cancer-related decisions. Effective communications can move people to engage in behaviors that will improve their health, such as stopping smoking or undergoing screening for certain types of cancer. The Department of Health and Human Services' Science Panel on Interactive Communications and Health has concluded that few other health-related interventions have the potential of interactive health communications to simultaneously improve health outcomes, decrease health care costs, and enhance consumer satisfaction.
Scientists and communications experts have been studying the process of effective communication and its impact on health for more than 25 years. They have produced increasingly refined theories of health communication, including those that focus on how people process health information and how they respond to cancer-related risks. These theories have enabled us to refine messages for people who differ in their readiness to take responsibility for their health. For example, intervention research on effective health communications has contributed to declining smoking rates among many groups in the U.S. Likewise, it has influenced the increasing proportions of Americans who are eating five fruits and vegetables per day, and getting screened for breast, cervical, and other cancers.
Moreover, changes in the role and accessibility of information are altering health care practices, patient-physician relationships, and the way consumers and patients acquire and use information. Where once physicians were the main source of health information, now many consumers are actively seeking information to meet their needs. The commercial sector has responded to this paradigm shift by developing new communications technologies at a dizzying rate. As we enter the 21st century, consumers and professionals alike have, or will have, a host of new opportunities for creating, distributing, and acquiring health information from the World Wide Web, individually-tailored print and multimedia materials, interactive computer games, interactive kiosks, and wireless pagers, among others.
It is impossible to overstate the impact of these "new media" on health communications. Consider, for example, the fact that:
- In 1998, 22.3 million adults in the U.S. searched on-line for health and medical information, and cancer was one of the most sought-after topics.
- Also in 1998, 1.3 million pieces of e-mail were processed each week by cancer-related listservs (e-mail groups devoted to a specific topic) hosted by the Association of Cancer Online Resources.
- In 1997, 41 percent of U.S. households had at least one personal computer, and that number continues to increase.
But this new world of expanded communications capabilities remains in many ways uncharted territory. Important questions confront us. How can we promote the demand for, access to, and use of cancer information, given the high national rates of medical illiteracy? How can we ensure that cancer communications are salient, accurate, relevant, and culturally sensitive to diverse audiences? How can we better design our interventions to use what works, to know what does not work, and to understand why? How can we help physicians to maximize their communication about cancer? How can we redesign information systems so they give people the information they want, how they want it, when and where they want it?
In addition, substantial barriers prevent major segments of the population from seeking and/or using cancer information. Some people continue to lack access to the medium. Others are faced with content that is unintelligible (i.e., in the wrong language or in language that is too complex), culturally inappropriate, or simply ineffective.
Furthermore, despite our progress in refining health communications theories, major gaps remain in our understanding of how consumers use health information. We must learn how to help people distinguish important from insignificant health risks and deal with contradictory health messages so that they can make informed choices. We must provide accurate and balanced information about all areas of cancer treatment and care, including complementary and alternative therapies. We must find the best ways to inform doctors of emerging "best practices" in patient care. And we must find ways to help physicians be more effective communicators and integrate cancer communications into all aspects of cancer care.
Cancer communication must be used to narrow the enormous gap between what we know and what we do at all levels and to reduce health disparities among our people. For example, new avenues are needed to reach children, especially those in vulnerable, high-risk populations. NCI is committed to improving demand for, access to, and use of cancer information for all, regardless of race, ethnicity, health status, education, income, age, gender, or geographic region.
Finally, new information technologies must complement, not replace, older but effective strategies, such as the mass media, one-to-one counseling, and targeted print communications. We know, for example, that many people still want to talk with a knowledgeable and supportive person. As we develop new technologies, we must not lose sight of the importance of the human bond.
To be effective, cancer communications must be integrated into the cancer continuum – from prevention through treatment to survivorship and to end of life issues, including palliative care and pain management. Communication should be an integral component of quality cancer care. NCI and its grantees and contractors have traditionally been leaders in health communication, but it is time to go beyond what we have done before – to take advantage of new knowledge about health behavior and new technology – to reduce the burden of cancer. If NCI takes the lead now, we have the opportunity to use both proven strategies and new communications technologies to help people increase their knowledge, enhance their ability to negotiate the health care system, understand and modify their health risk behaviors, speed the pace of discoveries, and increase access to and participation in clinical trials. Moreover, we will have a far richer understanding of how people use communications technologies of all kinds. Ultimately, we will improve outcomes in cancer prevention, early detection, treatment, and survivorship.
By investing now, we will seize a crucial opportunity to shape the emerging national information infrastructure to improve cancer communications. At this pivotal juncture, there is a need for a public institution such as NCI to provide leadership in the cancer communications arena; the broad and reasoned perspective that NCI brings to patients and health care providers alike is essential to successfully implement communications strategies to reduce the cancer burden.
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Fundamental Assumptions of Cancer Communications
- Proactive communication strategies are needed across the cancer continuum to rapidly accelerate a reduction in the cancer burden and across the life span.
- A successful strategy requires that we reach a broad cross-section of the U.S. population.
- NCI's cancer communications should be based on scientific evidence obtained through high quality research and its products should be evaluated for efficacy, impact, and use by the target audiences.
- Access includes removing cost barriers and improving ease of use, familiarity, cultural appropriateness, and appeal of the medium.
- Comprehension is essential, and messages must be perceived as salient, appropriate, and relevant.
- We must offer a flexible and adaptable menu of communication choices to reach the public, patients, underserved populations, survivors, and health providers in diverse settings.
- The new media should complement more "traditional" media such as mass media, the telephone, and one-to-one interpersonal communications.
- We must forge effective partnerships with other NIH Institutes, the Centers for Disease Control and Prevention, voluntary health organizations such as the American Cancer Society, and advocacy and self-help groups.
- Partnerships with industry and academia are essential to identify and gain access to emerging communication technologies. These partnerships should include computer, telecommunications, pharmaceutical, insurance, and new media companies.
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Goals and Plan
The Goals
- Accelerate reductions in the U.S. cancer burden through the use of cancer communications.
- Integrate cancer communications into the cancer continuum so that it is an accepted and practiced component of quality care.
- Increase the demand for, access to, and use of cancer communications by diverse populations including the public, high-risk persons, underserved and disabled populations, children, patients, survivors, and health professionals.
- Use cancer communications to speed the dissemination of "best practices" across the cancer continuum from prevention through treatment and survivorship or end of life.
- Strengthen and monitor the use and efficacy of NCI's own communications and communication products.
- Develop the infrastructure needed to accelerate advances in cancer communications, such as the testing of strategies, models, and tools; and dissemination of results to researchers, clinicians, patients, practitioners, advocacy groups, other partners, and the public, including emerging on-line communities of interest.
The Plan: Objectives
- Establish new data collection and analysis strategies to obtain data at regular intervals for cancer communications planning, research, evaluation, and marketing.
- Sponsor a triennial survey of a nationally representative sample of the U.S. population that is conducted on a recurring basis with input from investigators in the field.
- Add questionnaire items to the National Health Interview Survey and the CDC Behavioral Risk Factor Surveillance Survey to more effectively monitor national trends related to cancer communications.
- Track promising new product development, monitor software developers and hardware manufacturers as well as market research firms that monitor developers and manufacturers and often are the first to spot new product uses.
- As technology evolves, monitor emerging information needs and ensure that mechanisms are in place to conduct the appropriate research to address unmet and perhaps previously unarticulated needs.
- Create Cancer Communications Centers of Excellence to provide interdisciplinary units for communications research.
- Facilitate rapid advances in knowledge about cancer communications.
- Develop new theories of health and cancer communications that are appropriate to underserved populations.
- Develop strategies to improve the penetration, efficacy, effectiveness, and dissemination of cancer communications.
- Identify optimal formats for communicating cancer risks.
- Develop an integrated cancer knowledge management strategy, including an adapted Cancer Information Service (CIS) that offers a menu of communication choices designed to meet and respond to people's diverse information needs.
- Integrate NCI's information services.
- Infuse new media technologies into all NCI information services.
- Disseminate best processes.
- Support and use new research methodologies and approaches to respond to the swift pace of change inherent in the communications revolution.
- Create an extended enterprise knowledge base at NCI that integrates linkages to appropriate external resources.
- Foster cooperative relationships with other public health agencies, advocacy groups, support organizations, and industry.
- Develop new communication products to improve cancer communications to diverse audiences.
- Develop and update regularly practical toolkits for the public, patients and their caregivers, underserved populations, advocacy groups, health professionals, and cancer communicators to improve the state of cancer communications.
- Fund research to develop practical decision aids to improve patient-provider communication and to help people make better cancer-related decisions.
- Fund workshops and seminars to promote dissemination and use of these practical tools and to solicit information concerning current levels of use and barriers.
- Identify, create, and nurture the newest and most promising communication technologies.
- Collaborate with academia and the private sector to encourage the development or new uses of software and hardware to improve cancer communications.
- Train the health communications scientists, researchers, and practitioners needed to achieve our scientific and health communications objectives.
- Encourage the development of interdisciplinary training programs that, at a minimum, include people in health behavior, marketing, engineering, communications, public health, and medicine.
- Fund existing health communications research laboratories to conduct training programs and provide opportunities for research professionals in growing areas, including risk communication.
Resources Needed
| Expand data collection. | $5.0 M |
- Sponsor a nationally representative triennial survey and make results publicly available.
- Add questions to established surveys to monitor national trends in cancer communication.
- Track promising new product development.
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| Establish 6-8 Cancer Communication Centers of Excellence. | $12.0 M |
| Develop an integrated cancer knowledge management strategy. | $10.0 M |
- Integrate new media technologies into NCI information services; link to external resources.
- Support new research methods/approaches and disseminate best processes.
- Integrate new information technologies for easier, more efficient, and less costly organization, packaging, and communication of cancer information for users with diverse needs.
- Foster relationships with public health agencies, advocacy groups, and industry.
- Expand communication choices available through CIS.
- Integrate the restructure of PDQ and the CIS activities into NCI's clinical research program.
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| Develop practical tools for cancer communications. | $3.5 M |
- Develop toolkits for media, public, patients, underserved populations, advocacy organizations, health professionals, and cancer communicators to improve cancer communications.
- Support development of decision tools, appropriate for underserved populations.
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| Identify, create, and support promising communications technologies. | $1.5 M |
- Expand JOLT (Joining Organizations with Leading Technologies).
- Co-sponsor state-of-the-art meetings on emerging technologies.
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| Foster interdisciplinary training and educational programs. | $6.0 M |
- Develop interdisciplinary training programs to prepare needed personnel in cancer-related consumer health informatics and cancer communications.
- Fund existing health communications research laboratories to conduct short- or longer-format training programs for research professionals.
- Develop a Master's Program in health communications and media technology delivery.
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| Develop NCI infrastructure in cancer communications research. | $4.0 M |
- Recruit staff expert in health communications and media development, use, and research.
- Create an in-house laboratory for testing cancer communications.
- Implement freestanding science bureau to improve reporting in cancer communications.
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| Management and support. | $1.0 M |
| TOTAL | $43.0 M |
Informing Professionals and the Public
Every day, thousands of people – health professionals, cancer patients and their families, and the general public – benefit from NCI's broad array of information and public education services. Using basic printed materials, sophisticated Internet technology, and everything in between, NCI provides millions of people each year – often in Spanish as well as English – with the complete, reliable information they need to make decisions about cancer prevention, detection, treatment, and follow-up care. NCI's services include:
- The Cancer Information Service (CIS). This nationwide cancer information and education network, available in all 50 states, Puerto Rico, and the U.S. Virgin Islands, receives more than 2,000 calls each day. By calling 1-800-4-CANCER (1-800-422-6237), cancer patients, their families, people at risk for cancer, and health professionals can receive information confidentially on all aspects, including prevention, treatment and clinical trials. Callers with TTY equipment can dial 1-800-332-8615.
- NCI's Internet Services. Patients and health professionals with access to the Internet may search for accurate, up-to-date information about cancer on: NCI's Web site (http://www.nci.nih.gov) or the International Cancer Information Center's CancerNet™ Web site (http://cancernet.nci.nih.gov) and cancerTrials™ (http://cancertrials.nci.nih.gov).
- Physician Data Query (PDQ®). The CancerNet™ searchable PDQ® data base contains current information on cancer prevention, screening, treatment, and supportive care, as well as descriptions of active clinical trials and directories of physicians, health professionals who provide cancer genetics services, and organizations involved in cancer care.
- CANCERLIT®. This bibliographic data base contains more than 1.4 million records on cancer literature from 1963 to the present. It can be searched from the CancerNet™ Web site.
- The PDQ/CANCERLIT® Service Center. Physicians and other health professionals can make requests for PDQ and CancerLit information through a toll-free telephone service (1-800-345-3300), e-mail (cancermail@icicc.nci.nih.gov with the word "help" in the body of the message, users receive a contents list and ordering instructions by return electronic mail.), or fax (301-402-5874).
- Print Publications. NCI makes available nearly 600 publications and audiovisual materials, many published both in English and Spanish. They are available from the toll-free number 1-800-4-CANCER or from the NCI Web site. NCI is also working to develop materials in several Asian languages.
Links to Related Information
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