Cancer Communications

Scientific Priorities for Cancer Research: Extraordinary Opportunities

Cancer Communications

Goal
Opportunity
Progress in Pursuit of Our Goal
2002 Plan and Budget Request
Links to Related Information

Goal

Understand and apply the most effective communications approaches to maximize access to and use of cancer information by all who need it.

Opportunity

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. Radio and television continue to be powerful communication tools, and the Internet has multiplied exponentially our ability to make large amounts of information available to a wide audience quickly and easily.

NCI, its grantees, and contractors have long been leaders in health communications. Now it is time to seize the opportunity presented by new knowledge of health behavior, new technologies, and our arsenal of proven strategies to further empower people to increase their knowledge, use the health care system more effectively, and understand and modify their health risk behaviors. By increasing patient access to and participation in clinical trials, we also can speed the pace of discovery. Through these efforts, we will have a far richer understanding of how people use communications technologies of all kinds, and we will use that understanding to improve outcomes in cancer prevention, early detection, treatment, and survivorship.

Supporting Information:
The Changing Scene for Cancer Communications
Understanding and Empowering Informed Decisionmaking

The Changing Scene for Cancer Communications
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 using a variety of information sources to meet their needs.
Both consumers and health professionals now have an array of new opportunities for creating, distributing, and acquiring health information from sources such as the World Wide Web, electronic mail, individually tailored print and multimedia materials, interactive computer games, interactive kiosks, and wireless pagers.

These "new media" already have had an enormous impact:

According to a poll released by Harris Interactive in February 2000, more than half of U.S. households are now online and of these, 90% use the Internet.
ACNielsen reported in May 2000 that nearly two-thirds of Americans over age 12 have access to the Internet, and half go online every day.
A 1999 Harris Poll found that approximately 70 million (74 percent) of adults who use the Internet searched online for health information. Cancer was the third most sought-after health topic.
In 1999, cancer-related listservs (e-mail groups devoted to a specific topic) hosted by the Association of Cancer Online Resources processed 1.9 million pieces of e-mail each week.

Substantial barriers still prevent major segments of the population from seeking and/or using cancer information. Some people continue to lack access to the array of cancer communications media. Others are faced with content that is unintelligible to them (in the wrong language or in language that is too complex), culturally inappropriate, or simply ineffective.

There clearly is a "digital divide" in our Nation and around the world. Those who lack access to information and new online tools — the information "have nots" — are more likely to be poor, to have less than a high school education, and to be ethnic minorities. We must work to eliminate this divide.

We are challenged to help physicians and other health care providers optimize their communications about cancer, and to redesign information systems so they give people the information they want how, when, and where they want it. To do so, there are some important questions we must answer:

How can we promote knowledge about, tools for, access to, and use of cancer information, given the high national rates of medical illiteracy?
How can we ensure that cancer communications and interventions are relevant, meaningful, and culturally sensitive to diverse audiences?
How can we know what does not work and why?

New information technologies must complement, not replace, older but effective strategies, such as the mass media, one-to-one counseling, and targeted print communications. For example, most people still want to talk directly with a knowledgeable and supportive person. Such interactions can enhance outcomes of and satisfaction with care.

As we develop new technologies, we must not lose sight of the importance of personal interactions and the need for continuing research and practice to strengthen one-to-one communications.

We also must take into account that consumers, patients, and health professionals alike are coming to expect seamless, integrated, accessible, tailored communication choices. They want to move easily among these new and older information technologies — for example, to go from a Cancer Information Service information specialist to CancerNet or to talk to the specialist while viewing a Web site.

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 for all, regardless of race, ethnicity, health status, education, income, age, gender, or geographic region.

Understanding and Empowering Informed Decisionmaking about Cancer
From primary prevention to survivorship and end of life issues, communication empowers people to make informed cancer-related decisions and to engage in behaviors that will improve their health.

The Science Panel on Interactive Communication and Health convened by the Department of Health and Human Services 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 studying the process of effective communication and its impact on health for more than 25 years have produced increasingly refined theories of health communications, including those that focus on how people process health information and how they respond to cancer-related risks. These theories have been applied to interventions that have contributed to declining smoking rates among many groups in the United States, to the increasing proportions of Americans who are eating more fruits and vegetables each day, and to the larger numbers of people who are getting screened for breast, cervical, and colorectal cancers.

Despite our progress in refining health communications theories, however, 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 or inaccurate health messages so they can make informed choices.
Provide accurate and balanced information about all areas of cancer treatment and care, including complementary and alternative therapies.
Narrow the enormous gap between what is known about cancer communications and what is practiced.
Find the best ways to inform physicians, nurses, and other health care providers of emerging best practices in patient care. We must help them to become more effective communicators and to integrate cancer communications into all aspects of cancer care.
Harness the power of health communications to reduce cancer-related health disparities.

To achieve these aims, more research is needed, and the cadre of health communications scientists and practitioners who can conduct communications research and apply the results must be expanded.

Progress in Pursuit of Our Goal

NCI is already making progress in pursuit of our cancer communications goal.

Example areas of progress:
Health Information National Trends Survey
Message Tailoring and Behavioral Counseling
Enhancing Information on Health Care Quality
Centers of Excellence in Cancer Communications Research
Knowledge Management System
Overcoming the Digital Divide
Applying Emerging Technologies
Meetings and Workshops on Communications
Reorganized Office of Communications

For further information on these and other NCI initiatives in cancer communications, visit http://cancercontrol.cancer.gov/eocc.

Health Information National Trends Survey
NCI is taking the lead on developing the Health Information National Trends Survey:

The first nationally representative survey of the American public — with emphasis on underserved populations — about their access to and use of cancer-related health information.
A biennial, longitudinal data collection with emphasis on underserved populations.

NCI is assisted in this effort by national experts in health communications and representatives of other parts of the Department of Health and Human Services, including the Centers for Disease Control and Prevention, the National Institute for Occupational Safety and Health, and the National Library of Medicine at NIH. For more information, visit http://dccps.nci.nih.gov/hcirb/surveyoverview.html

Message Tailoring and Behavioral Counseling
NCI is:

Conducting ten research projects focused on maximizing effective cancer communications through message tailoring and increasing the impact of behavioral counseling on cancer control interventions.
Working in collaboration with the Agency for Healthcare Research and Quality, we are funding a review of the research evidence on cancer-related "decision aids" — interventions designed to help people make specific and deliberate choices by providing information on options and outcomes specific to a person's health status. The review will provide guidance about what research is needed in this important area. For more information, visit http://www.ahrq.gov/research/rtitab.htm

Enhancing Information on Health Care Quality
NCI and the Agency for Healthcare Research and Quality are co-funding a demonstration project to enhance consumer and patient use of information about health care quality. The investigators are developing new tools for communicating about cancer-related risks. The demonstration project will:

Develop and test methods for providing information on quality for consumers and patients to use when making health care decisions.
Evaluate the impact of strategies to provide information about quality to these audiences.

For more information, visit http://grants.nih.gov/grants/guide/rfa-files/RFA-HS-00-002.html

Centers of Excellence in Cancer Communications Research
NCI is creating Centers of Excellence in Cancer Communications Research to speed advances in cancer communications knowledge.

Interdisciplinary teams of researchers will develop, implement, and evaluate strategies to improve both access to cancer information and its efficacy, effectiveness, and dissemination.
The Centers will collaborate with other NCI-funded centers, such as the Comprehensive Cancer Centers, Transdisciplinary Tobacco Use Research Centers, the Special Populations Networks for Cancer Awareness Research and Training, and the Cancer Information Service.

Cancer Knowledge Management System
NCI is using new technologies to implement an integrated cancer knowledge management system:

A new Publications Locator lets users view and order NCI publications online from the NCI Web site. Users can access publications on various types of cancer, treatment options, clinical trials, genetics, risk factors, cancer causes, prevention, and managing side effects and pain. For more information, visit http://cissecure.nci.nih.gov/ncipubs/
Pilot projects are underway to develop an online Cancer Information Service (eCIS) that would provide another alternative for people to get answers to their questions about cancer and research findings.

Overcoming the Digital Divide for Cancer Communications
Unequal access to cancer information is a critical problem for cancer communications.

In 2000, NCI will provide supplemental funding, in conjunction with our Cancer Information Service regional offices, for Pilot Projects to Overcome the Digital Divide.
These projects will provide the foundation for larger scale projects to respond to the access needs of underserved populations.

Applying Emerging Technologies to Cancer Communications
NCI's Operation J-O-L-T (Joining Organizations with Leading Technologies) is working with numerous other groups to bridge the gap between emerging technologies and their application to cancer communications. We:

Coordinate activities with the World Wide Web Consortium on Cancer to collaborate, share information, and support one another in the delivery of authoritative cancer knowledge via survivor-run and other Web sites. We have arrangements with commercial online vendors to provide their customers information on NCI resources, publications, and the Cancer Information Service hotline (1-800-4CANCER).
Work with an Internet access hardware and software provider to enable low income families to add cancer information to their Web portal.
Collaborate with a maker of novel devices for inexpensive Internet access to include links to NCI and to customize for use by cancer patients.

Meetings and Workshops on Health Communications
In 2000, NCI:

Established the Eleanor Nealon Extraordinary Communicators Lecture Series, which pays tribute to outstanding communicators who have advanced the science of communication or the communication of science. For information on the first recipient, visit http://dccps.nci.nih.gov/excl/highlights.html.
Supported several creative meetings and workshops on cancer and health communications-related topics, including:
- A Media and Health Education workshop (co-sponsored with Rutgers University)
- The Future of Health Technology Summit 2000 (co-sponsored with the Massachusetts Institute of Technology)
- The Strategic Education and Training in Health Communication workshop.

Reorganized NCI Office of Communications
NCI reorganized its Office of Communications in May 2000 to provide a comprehensive, integrated, and technology-based communication structure that will increase the effectiveness of our interactions with the public. New organizational units will:

Enhance our capabilities in Web design and evaluation.
Maximize our use of emerging technologies.
Optimize our ability to help people with cancer inquiries navigate through the NCI communications structure.
Increase our readiness to form partnerships with outside organizations.

For more information on NCI's Office of Communications, visit http://oc.nci.nih.gov/.

A new Office of Education also has been established as an essential NCI communication arm.

2002 Plan and Budget Request

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

Objectives, Milestones, and Budget Request

SUMMARY
Cancer Communications Objectives		2002 Budget Request
1.	Support cancer communications planning, research, evaluation, dissemination, and marketing.	$3.5M
2.	Create Centers of Excellence in Cancer Communications Research.	$12.0M
3.	Develop a menu of communication choices.	$6.0M
4.	Train health communications scientists, researchers, and practitioners.	$3.0M
5.	Continue to integrate and restructure NCI's communications activities.	$2.0M
Management and Support		$1.0M
Total		$27.5M

Objective 1	2002 Budget Request
Support cancer communications planning, research, evaluation, dissemination, and marketing by establishing new data collection and analysis strategies.	$3.5M

2002 Milestones

Sponsor the Health Information National Trends Survey. ($1.00M)

Access relevant commercial data on use of the new media for health communications. to inform NCI's planning and evaluation efforts about which audiences use which new media, and how they use them. ($1.00M)

Fund Pilot Projects to Overcome the Digital Divide to test strategies to increase access to and use of online and other interactive cancer communications. These competitive grant supplements will be made to existing Cancer Information Service contractors to conduct pilot research in their regions. ($1.50M)

Objective 2	2002 Budget Request
Accelerate research, development, and interventions in cancer communications.	$12.0M

2002 Milestones

Support Centers of Excellence in Cancer Communications Research.

Provide support for investigators to diffuse and disseminate NCI-funded evidence-based interventions.

Objective 3	2002 Budget Request
Develop a menu of communication choices to meet the needs of all users, and especially to increase knowledge about, tools for, access to, and use of these choices by diverse populations.	$6.0M

2002 Milestones

Conduct a series of pilot tests to explore the feasibility of new directions, using different Cancer Information Service offices and cancer centers as test beds. ($3.00M)

Develop new communication products to facilitate cancer communications for the public, patients and their caregivers, underserved populations, advocacy groups, health professionals, and cancer communicators. Continue work with the Agency for Healthcare Research and Quality to fund research on decision aids, and link with Pilot Projects to Overcome the Digital Divide to promote dissemination and use of interactive communication tools and collect information on current levels of and barriers to use. ($3.00M)

Objective 4	2002 Budget Request
Increase the Nation's capability and capacity for cancer communications by training the health communications scientists, researchers, and practitioners needed to achieve our scientific and health communications objectives.	$3.0M

2002 Milestones

Encourage the development of interdisciplinary training programs that, at a minimum, include people in the fields of health behavior, marketing, engineering, communications, public health, and medicine. ($1.00M)

Fund existing health communications research laboratories to conduct intensive training programs and provide opportunities for research professionals in growing areas, including risk communications and interactive health communications. These will include intensive short-term training programs, grants for interdisciplinary training, and distance learning programs. ($2.00M)

Objective 5	2002 Budget Request
Enhance and refocus NCI's communications activities to provide a comprehensive, technology-supported capability for imparting information about cancer that is easily accessible, timely, and appropriate.	$2.0M

2002 Milestones

Enhance the accessibility and user-friendliness of NCI's databases and Web sites.

Centralize the coordination of external and internal communications activities to maximize proactive responses to communications priorities and challenges, ensure optimal public access to NCI's information resources and products, and promote NCI's identity as an accurate source of information and as the national leader in cancer research and discovery.

Links to Related Information