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Understand, apply, and disseminate effective communication approaches that maximize access to and appropriate use of cancer information by all who need it.
From primary prevention to survivorship or end-of-life care, and all points between, communication plays a vital role in reducing the burden of cancer. Communication can:
- Motivate people and communities to take actions that reduce their cancer risk.
- Encourage healthy diets, regular exercise, smoking cessation, and the utilization of age-appropriate cancer screening.
In every cancer diagnosis, communication plays a key role in helping patients and physicians make the best decisions about treatment options, risks, and benefits. And those who live beyond cancer are more likely to experience a better quality of life when they have access to useful information and support in dealing with post-treatment effects. Culturally and linguistically appropriate communication helps people make decisions that are compatible with people's values and beliefs.
Research reveals substantial gaps between the information people want and need and what they receive:
- The explosion in information delivery systems such as the Internet means that people receive cancer information from any number of surces, each characterized by varying levels of quality and reliability.
- The inconsistent quality and reliability of the information jeopardizes the ability of patients and their caregivers to sort out which information to use in making critical, sometimes lifesaving, decisions.
- Research shows that people perceive information based on their prior knowledge, beliefs, and experiences.
- America's increasing cultural diversity and a pervasive pattern of disparities that limit access to and use of cancer information only add to the complexities of effective cancer communications.
NCI is committed to helping Americans better understand news about cancer - whether the news comes in the form of a diagnosis, media report, or Website communication. A better understanding of cancer:
- Encourages appropriate responses and minimizes inappropriate ones.
- Helps to improve communications between patients and healthcare professionals, thereby facilitating informed decision making by patients.
To achieve these important aims, the Institute's communication and education activities span the cancer control continuum. For example:
- NCI promotes cancer prevention and detection through communication activities that provide the information, tools, and encouragement people need to embrace actions known to reduce cancer risk.
- NCI's communication activities also promote the use of age-appropriate cancer screening and early detection tests (e.g., mammograms, Pap tests, and colorectal cancer screening tests).
- Our efforts in the areas of diagnosis, treatment, and survivorship include empowering people who have cancer to make informed decisions about treatment, disease management, palliative care, and end-of-life options.
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Discovery
Development
Delivery
Discovery
Increasing Knowledge through Discovery
The Centers of Excellence in Cancer Communications Research (CECCRs) are the centerpiece of NCI's communications research. The centers contribute to the fundamental advancement of cancer communication science by examining the processes and mechanisms through which communication plays a role in cancer control. Four centers were funded in July 2003 to carry out a variety of projects such as:
- Facilitating information seeking related to prostate, breast, and colorectal cancers.
- Developing decision aids concerning tamoxifen use among women at high risk for breast cancer.
- Promoting fruit and vegetable intake among African Americans.
- Examining media coverage of cancer-related issues in African American newspapers.
- Developing and evaluating new interactive health communication systems.
The range of projects will cover the discovery-development-delivery continuum, and all the centers will train future cancer communication scientists. A recent portfolio analysis of more than 75 NCI health communication grants revealed that almost half the awarded grants are focused on prevention, with the remainder addressing treatment and detection as well as the communication needs of cancer survivors. The addition of CECCRs will generate more grants focusing on discovery and advancement of cancer communication science.
As a first step toward understanding the nature, extent, and depth of media coverage on cancer, NCI is conducting a pilot study to examine how news media reported the 2002 controversy on mammography's efficacy in saving lives.
- An analysis of news stories published in the Nation's top 50 newspapers will reveal how reporters framed the controversy in terms of risks and benefits, and which sources, among scientists and the advocacy community, were used in reporting the debate.
- This study will serve as a complement to surveys that assessed women's reactions to the hormone replacement therapy controversy.
- Both the content analysis and the surveys will help NCI understand how media coverage of cancer could influence audience perceptions of risk and risk-related behaviors.
- The findings will enable NCI to take appropriate actions to influence people's risk behaviors as well as proactively work with the media to provide accurate and timely information on cancer. These studies also will help inform future communications planning.
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Development
Developing and Evaluating Communication Resources and Interventions
To promote increased participation in cancer clinical trials, NCI developed a Web-based course for health professionals, Incorporating Clinical Trials into Your Practice. The course emphasizes the importance of health professional participation in clinical trials, either through referral or by becoming a clinical trials investigator, and provides practical information and guidance on conducting and locating trials. It complements NCI's Clinical Trial Education Series (CTES), a set of 13 educational resources designed to educate health care professionals and the public (cancer.gov/clinicaltrials/resources/clinical-trials-education-series). Course participants may receive Continuing Medical Education credits for course completion.
NCI held a workshop on health behavior theories in May 2002 to examine actions individuals can take to prevent cancer and speed its early detection. A group of experts with backgrounds in risk communication, risk behaviors, cancer screening, diet, and tobacco addiction discussed how our understanding of health behaviors could be improved in order to help inform health interventions. The need to train future health behavior scientists was also discussed. Several spin-off projects are being planned, including:
- A workshop on conceptualizing and measuring perceived risk
- Development of Web resources on constructs and measures
- An advanced training institute on theory development and testing
- A literature review on the role of perceived risk in health behavior
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Delivery
Partnering to Deliver Evidence-Based Cancer Interventions
NCI has taken an important first step in bridging the gap between development and delivery by funding grant supplements for investigators to disseminate promising interventions and products, including interventions where statistical and public health/clinical significance suggests the merits of dissemination to the broader population. The first seven supplements address:
- Sun safety
- 5 A Day promotion
- Smoking cessation
- Dietary patterns in preschool children
- Cancer screening
- Interventions for use in managed care settings
- Interventions for underserved populations
NCI encourages all Americans to eat 5 to 9 servings of fruits and vegetables a day for better health. This advice is especially critical for African American men, who suffer a disproportionately high incidence of and mortality from many chronic diseases related to diet, including cancer. In 2003, NCI launched a 9 A Day campaign for African American men. The campaign includes national radio programming on more than 230 affiliate urban stations through a faith-based initiative, and outreach and partnership opportunities with national African American organizations and television programming outlets.
In a related campaign, a National Basketball Association sports celebrity helped NCI spread the message to all men to "Shoot for 9" via public service announcements and media interviews that aired during the 2003 playoffs. For more information see 9aday.cancer.gov .
One of NCI's most powerful communication arms is the Cancer Information Service (CIS). CIS helps people become active participants in their health care by providing the latest scientific cancer information in understandable language. Through a network of 14 regional offices located at Cancer Centers or major medical centers throughout the country, CIS serves the entire United States, Puerto Rico, the U.S. Virgin Islands, and the U.S. Territories. In 2002, CIS handled over 1.4 million requests for service from patients, their families, the general public, and health professionals.
CIS offers additional services to the public including:
- Smoking cessation assistance (1-877-44U-QUIT)
- Cancer-related publications
- Recorded information about cancer 24 hours a day, 7 days a week (1-800-4-CANCER)
In addition, through its Partnership Program, CIS collaborates with national, state, and regional organizations to develop appropriate cancer education programs for minority and medically underserved populations. The Partnership Program brings cancer information to people who do not traditionally seek health information or who may have difficulties doing so because of educational, financial, or language barriers.
In a unique public-private partnership with the Centers for Medicare and Medicaid Services (CMS) and the National Asian Women's Health Organization, NCI adapted, tested, and nationally disseminated an Asian American/Pacific Islander (AAPI) mammography education resource. Developed for Chinese, Vietnamese, and Pacific Islander women in their 40s and older, this breast health screening brochure was adapted from CMS-funded intervention research. NCI collaborated with five AAPI community organizations to pilot test this educational resource. A multipronged distribution strategy focused on 10 U.S. geographic areas with the largest concentrations of AAPI populations. Evaluation of the distribution strategy is underway.
With the newly revised Making Health Communications Programs Work: A Planner's Guide, NCI has provided a resource for health communicators that emphasizes a practical approach to the communications process and reflects recent advances in knowledge and technology such as the Internet. This highly popular publication has been an essential communications tool for many professional associations, private organizations, and government agencies. Communicators can use the Guide to:
- Assess community needs
- Create messages
- Identify appropriate audiences and media
- Conduct market research
- Create partnerships
- Evaluate and improve programs
Research Tested Intervention Programs (RTIPs), a collaboration between NCI and the Substance Abuse and Mental Health Services Administration, was launched as part of the Web portal, Cancer Control PLANET. RTIPs provide access to examples of evidence-based intervention programs and products developed and evaluated by researchers in the field.
Cancer Control PLANET provides access to data and resources that can help cancer control planners, program staff, and researchers design, implement, and evaluate evidence-based cancer control programs.
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Discovery
Development
Delivery
Discovery
| 1. | Increase knowledge about cancer information needs, beliefs, decision making processes, and behaviors, and the relationships between these factors among different publics, including general populations, the underserved, patients and their caregivers, high-risk groups, and health providers. | $12.50 M |
- Investigate and monitor the commercial communication, consumer technology, and health technology industries to identify developments that are likely to influence access to, the means for, and the effectiveness of cancer-related communication 3 to 10 years into the future. $0.50 M
- Identify the information, communication, and decision making factors related to the etiology of cancer disparities, and develop an evidence base to support population-specific strategies for overcoming cancer disparities. $2.50 M
- Analyze data from a variety of sources, including the Health Information National Trends Survey (HINTS), to understand public knowledge, attitudes, beliefs, and information-seeking behaviors related to cancer and screening practices, with an oversampling of underserved groups. Examine different ways to collect data, including online data collection. Conduct methodological and measurement experiments to refine survey methods. $2.00 M
- Investigate high-priority cancer communication issues among different population subgroups ($4.00 M) on such issues as:
- Risk communication
- Health literacy
- Informed decision making
- Provider-patient communication
- Perceptions of cancer clusters
- Communication of cancer statistics
- Perceptions of cancer as a chronic disease
- The information needs of cancer patients as they undergo and recover from various treatment modalities
- Exit communication strategies for patients who are leaving clinical trials
- Perceptions and practices of various population groups with regard to genetic testing for cancer.
- Examine the fundamental processes and mechanisms of cancer communication science through continued funding of the Centers of Excellence in Cancer Communications Research (CECCRs).
- Analyze NCI's intramural clinical trials recruitment methods to develop a model for Phase I and II clinical trials recruitmentand follow-up care. $0.75 M
- Identify how various population groups understand recommendations on diet, physical activity, and weight for the purpose of informing the development of communication programs. $2.00 M
- Survey health and science journalists to understand contemporary methods and strategies used in health reporting. $0.75 M
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Development
| 2. | Develop and evaluate communication resources and interventions for use in reducing the cancer burden, including overcoming barriers to access to and completion of cancer treatment, particularly among underserved populations. | $18.50 M |
- Study the nature of information provided to different audiences through various media, including the Internet, and the availability of these media to underserved communities and individuals. Measure the public's response to cancer information in the media through development of a Cancer Information Surveillance System (CISS). $4.00 M
- Establish and apply methods to ensure that communication tools, products, and programs used by NCI and its partners are evidence-based. These methods will include syntheses of research, consumer research, product development research, and systematic evaluation. $3.00 M
- Complete the development of HINTS as a public access database for research and program planning, and expand HINTS to include a survey of cancer survivors. $1.00 M
- Evaluate the effectiveness of the CIS in increasing the public's knowledge of cancer topics and positively influencing healthful behaviors and decisions. $2.00 M
- Evaluate CIS partners for the following: satisfaction with collaboration, success at reaching underserved populations, and organizational capacity to disseminate cancer information. $1.00 M
- Foster a more integrated and coordinated approach to media campaigns across NIH and in partnership with other Federal agencies, such as the Centers for Disease Control and Prevention, to develop important behavioral messages on health issues that cross multiple diseases. $1.50 M
- Cultivate relationships with the commercial communication, consumer technology, and health technology industries to foster improved access to and provision of effective cancer-related information, including decision making aids. $2.00 M
- Partner with advocacy groups, state health departments, and other Federal agencies to develop a strategy to help the public understand cancer clusters and to assist partners in communicating effectively about the issue. $2.00 M
- Collaborate with organizations to support and evaluate the outcomes of promoting accurate cancer information messages in popular culture (e.g., movies and television shows). $2.00 M
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Delivery
| 3. | Engage with partners and the media to deliver evidence-based cancer interventions in clinical and public health programs. | $10.50 M |
- Support dissemination research to identify optimal means for NCI and grantees to increase the adoption of NCI-funded evidence-based interventions. $3.00 M
- Facilitate the media's effective use of NCI's resources (for example, statistical reports) through outreach including annual workshops and toolkits. $1.00 M
- Translate findings and lessons learned from large prevention trials into key messages, tools, and products that can be used to inform and educate the public about cancer prevention. $1.50 M
- Strengthen collaborations with Federal agencies and other organizations to further reduce the burden of highly preventable cancers such as colorectal and lung cancers. $2.00 M
- Expand the dissemination of NIH and NCI grant resources, policies, and funding opportunities to the extramural scientific community engaged in cancer research. $2.00 M
- Expand efforts to communicate research findings to the public via the news media, using strategies and tools that reach ethnically diverse populations. $1.00 M
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| | Management and Support | $2.00 M |
| | Total | $43.50 M |
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The International Cancer Research Portfolio (ICRP) Website was launched in June 2003, providing public access to information about approximately 13,000 cancer-related research projects. The ICRP is the result of a collaboration among the NCI, the Congressionally Directed Medical Research Programs of the Department of Defense, and the National Cancer Research Institute of the United Kingdom.
This new online resource allows scientists, patient advocates, and the public to search and browse research portfolios of U.S. and U.K. cancer research organizations by specific cancer and type of cancer research, providing information about the funding organization, awardee institution, and principal investigator along with a detailed research abstract.
The ICRP initiative grew out of the efforts of a group of cancer funding organizations from the United States and United Kingdom that came together in 2000 and agreed to adopt a common coding system referred to as the Common Scientific Outline (CSO) for classifying cancer research. With such a system, the two nations have established a framework for better coordination and strategic planning within and among cancer funding organizations. To learn more about the ICRP and the Common Scientific Outline, go to www.cancerportfolio.org.
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