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Scientific Priorities for Cancer Research: NCI's Extraordinary Opportunities

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Cancer Communications

The Opportunity
The Changing Scene for Cancer Communications
Progress in Pursuit of Our Goal
Recent Research Findings Related to Cancer Communications
2003 Plan and Budget Increase Request



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


The Opportunity

It is not unusual today for newly diagnosed cancer patients to go to their doctors' appointments armed with printouts from CancerNet or other Web sites and lots of questions. People have more ways than ever to get information: by telephone, fax, email, the World Wide Web, TV and radio, and in person.

And the future holds even more choices:
  • Automated monitoring of vital signs
  • Voice recognition software
  • Wider use of wireless technology
  • Other technologic advances to make it easier and faster for people anywhere to access the best information about cancer
NCI's opportunity is to optimize the use of these tools while enhancing the absolutely essential interaction of patients with their doctors and nurses.

Indeed, new communication tools can facilitate partnerships between patients and their physicians. We must push forward the frontiers of technology in support of the public, patients, their families, and medical teams to ensure access to individualized, high quality, NCI-validated information. 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.

To build on our progress in refining health communication theories and interventions, we must close major gaps in our understanding of how people access and use health information as well as the discrepancies between what is known and what is practiced. We must:
  • Provide accurate and balanced information about all areas of cancer prevention, diagnosis, treatment, and care.

  • Learn how to help people distinguish important health risks from insignificant ones and make informed choices despite exposure to contradictory or inaccurate health messages.

  • Inform healthcare providers of emerging best practices, help them become more effective communicators, and integrate communications into all aspects of cancer care.

  • Find and implement the best ways to disseminate research results to the cancer research community, medical practitioners, patients, individuals at risk, and the public.

  • Increase communication with patients about access to and participation in high quality clinical trials.

  • Reduce cancer-related health disparities through health communications research and activities.

  • Expand the cadre of health communications scientists and practitioners who conduct research and apply results.
Through these efforts, we will gain a far richer understanding of how people use health information and access communications technologies of all kinds. We will use that understanding to improve outcomes in cancer prevention, early detection, and treatment and to improve the lives of cancer survivors and patients needing palliative care.


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.
  • In January 2001, 162 million people (58 percent of the U.S. population) accessed the Internet from home. (Nielsen//Net Ratings, February 2001)

  • The majority of Internet users have looked for medical and health information online.
    • About 57 percent have gone online to get medical information. (Pew Internet and American Life Project, February 2001)
    • Some percent of all online adults use the Internet to look for health care information; 24 percent go directly to a site that focuses only on health-related topics. (Harris Interactive, April 2001)

  • Approximately 55 percent of physicians use e-mail to communicate with colleagues; 13percent use it to communicate with their patients. (Harris Interactive, February 2001)

  • More and more patients want to communicate with their physicians via the Internet.
    • 81 percent of online adults would like to receive e-mail reminders for preventive care.
    • 83 percent would like follow-up e-mails after doctor visits.
    • 84 percent would like their doctors to be able to access and monitor their lab tests online. (Harris Interactive, January 2001)

  • Health insurers increasingly offer online patient-doctor consultations and reimburse doctors for their time. (Gannett News Service, April 23, 2001)

  • In 2000, the Association of Cancer Online Resources (ACOR) delivered nearly 2 million individual e-mails weekly to cancer survivors, their loved ones, health care professionals, and members of the public who participate in ACOR's online services. (ACOR, April 2001).


Progress in Pursuit of Our Goal

Understanding Our Audience Groups
Pilot Projects and Educational Materials
Communications Toolkit
NCI Education and Communication Products
Communications Related to Clinical Trials
Accelerating Research and Development of Interventions
Improving Communication Channels
Improving Dissemination of NCI Research Results

Understanding Our Audience Groups

To maximize the effectiveness of all our communications and to support communications research, planning, implementation, and evaluation, we are taking steps to collect, more effectively analyze, and disseminate critical information about our audience groups.

  • Planning for the Health Information National Trends Survey (HINTS) is well underway. HINTS, to be launched in 2002, will be the only national survey focused on cancer communications. It will gather information from about 9,000 participants on:
    • Health, sociodemographics, and access to health care
    • Knowledge about cancer
    • Risk perceptions
    • Cancer-related behaviors such as cancer prevention and screening
    • Data on such topics as personal cancer experience, social ties, and self efficacy.

    The data will be analyzed and made quickly available to the research community to inform future communications research and program planning for cancer as well as other health issues. Data will also be shared with the advocacy community through briefings and special reports.

  • NCI staff are tapping a health and lifestyle information database to:
    • Identify and disseminate data on the information needs of specific audiences.
    • Develop appropriate educational messages.
    • Identify the best media, locations, and techniques for communicating cancer information.

  • Staff also have developed and maintain a NewMediacy listserv that is narrowing the knowledge gap between the private and public sectors.


Pilot Projects and Educational Materials

NCI-sponsored pilot projects and educational materials focus on increasing access to and use of cancer communications by all populations. Last year, NCI announced a new initiative and within the same fiscal year, funded four research and development projects to develop unique approaches for overcoming the cancer digital divide. The projects provide underserved groups with access to and the wealth of cancer information now available through computers. Each involves public-private partnerships, and one has resulted in a joint effort with the Markle Foundation for continued funding. (See NCI Supports Digital Divide Pilot Projects.)


Communications Toolkit

NCI also is developing a communications toolkit to guide the development of health communications programs for underserved communities. It is designed to assist leaders and organizations in promoting health in their communities and addressing inequities in the quality of and access to cancer care. The kit will contain instructional materials and examples of proven strategies for effective cancer communications.


NCI Education and Communications Products

New NCI education and communications products serve as essential tools for researchers, patients, and health care providers. Recent products include:


Communications Related to Clinical Trials

We are working to improve the quality and volume of communications related to clinical trials.
  • Research is underway to improve and assess the communication of risks, benefits, and other essential elements of the informed consent and decision making processes.
  • A Web-based educational program is assisting research teams with issues related to the protection of human participants in research.
  • And our new Cancer Clinical Trials Education Series provides clinical trials information to the public, health care professionals, and patient groups.
See NCI's Challenge: Clinical Trials for more on clinical trials


Accelerating Research and Development of Interventions

NCI has taken several steps for accelerating research and development of interventions.

We solicited applications for grants to create up to five Centers of Excellence in Cancer Communications Research in Fiscal Year 2002. The response was excellent, showing that this initiative meets a real need in the research community. The Centers will:
  • Encourage focused interdisciplinary studies to accelerate scientific developments in cancer communications.
  • Increase the number of investigators from a range of disciplines who focus on the study of cancer communications.
  • Train investigators to conduct cutting-edge communications research directly relevant to the context of cancer prevention, detection, treatment, control, and survivorship.
NCI also supported a Community Clinical Oncology Program based project for collecting data from newly diagnosed cancer patients to learn more about their special communication needs. This information will be used for program planning and to assess the need for additional research.


Improving communication channels

Through the use of technology and in response to various needs, we are improving existing communication channels and developing new ones.

NCI's NewsCenter Web site, launched in May 2001, provides journalists with:
  • Easy access to downloadable photos, graphics, video clips, and audio clips
  • Transcripts of interviews with NCI scientists
  • Traditional press releases and backgrounders
  • Customized links to other relevant NCI Web sites
NCI also is using several new features on the Web including: A new Communication Technologies Research Center for usability testing, technology evaluation and demonstration, and training provides the tools needed to design evidence-based cancer information products and services.

A new Emerging Technologies Unit searches out and applies new and evolving technologies to cancer communications.


Improving dissemination of NCI research results

Several activities illustrate our commitment to improving dissemination of NCI research results. We are working to heighten researchers' understanding about the needs of end users of research products and to increase the usefulness of the products so they will benefit people.

We have put in place several mechanisms to assist scientists in the dissemination of research findings:

  • To increase the likelihood that citizens will benefit from our investment in research, we are strengthening NCI's partnerships with voluntary health organizations, HMOs, and community organizations and are planning to fund in 2002 six to eight competitive supplements to NCI grantees who have effective cancer control interventions ready for dissemination.

  • We are convening, in collaboration with private organizations and other Federal agencies, an interdisciplinary group to develop recommendations for intervention researchers and encourage new partnerships among researchers, funders, and receiving organizations.

  • As a unique component of the Transdisciplinary Tobacco Use Research Center (TTURC) program, the Robert Wood Johnson Foundation, as a cosponsor, has funded hiring a specialist at each TTURC to facilitate communication with the public, researchers, and the media.

  • See NCI's Opportunity in Tobacco Research for more information

  • In partnership with the Agency for Healthcare Research and Quality (AHRQ), we have commissioned an evidence-based review of effective strategies to facilitate dissemination of cancer-related interventions. We will communicate the results through the World Wide Web, print, and other channels.

  • In partnership with the Centers for Medicare and Medicaid Services, we are helping to support a national demonstration to test a new Medicare smoking cessation benefit for older smokers, including dissemination of an evidence-based smoking cessation guide for smokers ages 50 and older and a guide for Spanish speaking Medicare beneficiaries.


Recent Research Findings Related to Cancer Communications

NCI Supports Digital Divide Pilot Projects

NCI is supporting four research and development projects to overcome the digital divide by testing the efficacy of new communications technologies in cancer prevention and education.

These projects involve partnerships among NCI-supported Cancer Centers and Cancer Information Service (CIS) Centers at universities and a wide range of community organizations and programs including Head Start, urban and rural community groups, senior centers, and computer suppliers. We will assess the results of the pilot projects and disseminate information about promising interventions.

  • A regional CIS office is partnering with a Cancer Center, a Head Start Center, a group concerned with urban policy, and a group that supplies computers to children to develop techniques for teaching Head Start parents how to use computers and access health information on the Web.

  • Another Cancer Center and regional CIS office are partnering to increase access to cancer information and the use of technology by residents of an economically depressed area in the community.

  • A university and two regional CIS offices are collaborating to promote the use of, and training by, peer advocates for a computer-based education program among underserved women diagnosed with breast cancer in a rural area in one state and an urban area in another.

  • The project is helping some 280 African American women in the urban area play a larger role in their own care by providing them with access to online information. They are being trained in the use of laptop computers and are learning to get cancer information and support over the World Wide Web. These patients say it helps them connect with people and information at all hours of the day and night, especially when they are worried.

  • A collaboration between a university and a regional office of the CIS is examining the use of a low-literacy cancer information computer program to determine its potential to increase the use of new communication technologies for health information by older adults in a group of senior centers.


Study Shows Perceptions Can Change

NCI-supported researchers have shown that the combination of tailored print materials and a call from a telephone health advisor can have several positive effects. This was the first study to show that women's perceived risks about breast cancer could be changed, and that the changes were maintained a year later. Women who received the combination of tailored communications also were more knowledgeable about breast cancer and mammography and were significantly more likely to get mammograms.


Research on Targeted and Tailored Communications Highlights Successes

A group of NCI-sponsored health communications researchers recently teamed up to prepare articles for a special issue of the Journal of Family and Community Health. They reported on their efforts to develop communications for special populations, such as Asians, African Americans and Hispanics, and to individualize cancer information.

  • One team showed that focus groups could be conducted through the Internet and therefore could include people who would not otherwise participate.

  • Another group tested the feasibility of a tailored, interactive computerized cancer pain program for patients. In pilot research, the majority of patients said the computer programs were easy, enjoyable, and informative tools. The computer programs extend the reach of health professionals and permit better reporting of patients' pain and tailored advice based on each patient's unique pain profile.


The Plan - Cancer Communications

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.

Fiscal Year 2003 Objectives, Milestones, and Funding Increases Needed

1. Establish new data collection and analysis strategies. $4.1 M
2. Increase use of cancer communications, especially by underserved populations. $2.5 M
3. Accelerate research and development of interventions in cancer communications. $1.5 M
4. Develop a menu of communication choices to meet the needs of all users. $5.5 M
5. Improve the science of dissemination and the dissemination of science. $4.0 M
Management and Support $1.5 M
TOTAL $19.1 M

Objective 1: Establish new data collection and analysis strategies to support cancer communications planning and evaluation.
  • Analyze data from the Health Information National Trends Survey (HINTS) and make results available to researchers and program planners as early as possible.
$1.00 M
  • Explore the use of Internet-based data collection to follow a subset of people interviewed as part of HINTS.
$0.50 M
  • Conduct a HINTS survey of cancer survivors in parallel with the HINTS public survey to collect data on survivors' use of different media, their risk perceptions, cancer-related behaviors, personal cancer experiences, and use of complementary and alternative medicine.
$1.50 M
  • Explore the need for national data collection about health professionals' communication practices.
$0.35 M
  • Continue to operate the NewMediacy listserv and health and lifestyle database to inform NCI's planning and evaluation efforts about which audiences use which new media, and how they use them.
$0.20 M
  • Create a searchable database of cancer-related communication research reports accessible to researchers and program planners.
$0.50 M
TOTAL $4.1 M

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Objective 2: Increase access to and use of cancer communications by all populations, especially underserved populations.
  • Analyze and disseminate the results of four Digital Divide Pilot Projects to test strategies to increase access to and use of online and other interactive cancer communications by underserved populations.
$0.50 M
  • Fund additional Digital Divide Pilot Projects and evaluate outcomes.
$1.00 M
  • Transform the clinical trials Web portal to enable visitors to more quickly find information and resources.
$1.00 M
TOTAL $2.5 M

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Objective 3: Accelerate the pace of research and development of interventions in cancer communications.
  • Continue to support Centers of Excellence in Cancer Communications Research.
  • Establish interdisciplinary training partnerships and fund health communications laboratories to develop and conduct training programs for researchers in growing areas, including risk communications and interactive health communications.
$1.5 M
TOTAL $1.5 M

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Objective 4: 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.
  • Develop new tools and products to facilitate cancer communications for the public, patients and their caregivers, underserved populations, advocacy groups, health professionals, and cancer communicators.
$2.00 M
  • Continue work with the Agency for Healthcare Research and Quality to fund research on decision aids ("Making Quality Count for Consumers and Patients"). Link with Digital Divide Pilot Projects to promote dissemination and use of interactive communication tools and collect information on current levels of, and barriers to, use.
$2.00 M
  • Assess the status of low-literacy research and national initiatives in order to develop a strategic plan for low-literacy programs and materials.
$1.00 M
  • Develop and promote a media toolkit to facilitate the media's use of NCI's resources in preparing cancer-related stories.
$0.50 M
TOTAL $5.5 M

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Objective 5: Improve the science of dissemination and the dissemination of science to assure that our citizens realize the benefits of research investments.
  • Fund dissemination and diffusion supplements to grantees with proven interventions ready for dissemination.
$4.00 M
TOTAL $4.00 M

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