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Infrastructure Needed for Cancer Research: NCI's Challenge

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Studying Emerging Trends in Cancer


Goal
The Challenge
Progress Toward Meeting the Challenge
2003 Plan and Budget Request

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Goal

Expand cancer surveillance to improve monitoring of progress in cancer control and explain potential causes of cancer across all populations.

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The Challenge

Over the past few decades, NCI has worked with other agencies to create a national cancer surveillance system for tracking cancer trends.

At the heart of this system is the monitoring of cancer incidence, the number of people per 100,000 who develop cancer in a given year, and cancer mortality, the number of people per 100,000 who die from cancer each year. The system also tracks cancers that are declining and those on the rise. Because of cancer surveillance, for example, we know that since 1990, the rates of both new cancers and deaths have fallen for all cancers combined and for most of the 10 cancers with highest incidence, reversing a decades-long trend of rising rates in the United States.

At this time, our challenge is to develop a surveillance system that not only tracks cancer statistics but also helps us:

  • Form hypotheses for cancer research.
  • Make critical scientific and public health decisions.
  • Develop and monitor prevention and control measures.
  • Assess whether or not interventions are making a difference.

Rapid changes in information technology, in the diversity of our Nation's people, and in the state of health care delivery adds new complexity to the pursuit of this challenge. Advances in computerized information technology, increasing diversity in the U.S. population, and changes in health care delivery present new challenges to this task. To continue our pivotal role in effective and comprehensive national surveillance, we must:

  1. Improve surveillance in ways that help communities identify research needs and develop effective cancer planning and health policy. NCI's Surveillance, Epidemiology, and End Results (SEER) program must cover a broader spectrum of the population and compare information on why people get cancer, how it is treated, and with what outcomes. We must improve the measures we use to track cancer risk, screening practices, treatment, quality of life, quality of care, and morbidity. Surveillance must also integrate information on health care providers, health systems, cancer communities, and policy into local and regional databases.


  2. Develop research tools that track cancer trends more completely and precisely. We must change the way we make surveillance data available electronically to ensure privacy and confidentiality. We need new modeling techniques to help us explain trends across the full range of concerns about cancer. We need geographic information systems to study data on individuals in relation to potential environmental exposures. We must refine maps to allow easier application of statistical analyses for measuring patterns and identifying clusters.


  3. We must strengthen dissemination of surveillance data to scientists, the public, and policy makers. in a timely manner and a readily usable format.

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Progress Toward Meeting the Challenge

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Activities To Improve Surveillance

NCI has worked with many partners to build a broader surveillance program that is easily used for cancer research, planning, and policy decisions. We have expanded SEER (see featured Spotlight on Research) and made other important improvements.

We have augmented our data collection on risk, health behaviors such as smoking and diet, and screening. For example:

  • We have collected nationwide tobacco tracking data and conducted an in-depth evaluation, through the Cancer Research Network, of tobacco control activities conducted within medical practices across the United States.


  • We have enhanced dietary data collected in the National Nutritional and Health Examination Surveys by the National Center for Health Statistics. These modifications help us track progress made towards achieving the Healthy People 2010 nutrition objectives relevant to cancer control.


  • We released the 2000 National Health Interview Survey Cancer Control Topical Module, a survey of cancer risk, health behaviors, and screening conducted in collaboration with the National Center for Health Statistics, in the fall of 2001. This provides data for tracking progress in:
    • Cancer control health practices
    • Genetic testing issues
    • Other cancer-related health objectives

  • We also have linked mammographic screening data in diverse communities to cancer "outcomes" in the NCI-supported Breast Cancer Surveillance Consortium (BCSC) to provide national measures of mammography performance. BCSC scientists have reported their findings in over 120 peer-review journals. For example researchers found that:
    • The sensitivity of mammography screening was not different for women with and those without a family history of breast cancer, but screening sensitivity increased with age.
    • The sensitivity of mammography screening can be lower in women using hormone replacement therapy and among those with dense breasts.

We have added to our research on the adoption of new advances in cancer risk assessment, screening, and treatment and how their use impacts the lives of patients.

We have used surveys to learn how community physicians are applying emerging knowledge about cancer risk, screening, and treatment. For example:

  • A completed national survey of colorectal cancer screening practices in health care among 2,212 physicians:
    • Verified that colorectal screening is under-utilized in adults over age 50.
    • Identified that many patients are not aware of the need for colorectal screening and others avoid screening due to anxiety or embarrassment.
    • Found that, although most health plans cover colorectal screening, few have made an organized effort to deliver the service to eligible plan participants.
    • Helped identify potential targets for improving compliance with recommended screening.

  • A national physician survey on cancer susceptibility testing explored comfort with and use of genetic susceptibility testing among 1,250 physicians over a period of one year. This survey found that:
    • About 30 percent of responding physicians had used cancer susceptibility testing.
    • Most physicians expected this technology to be used more in the next five years.
    • Many physicians did not feel qualified to recommend genetic testing and most reported a need for guidelines regulating its use.

We have evaluated the use of many new cancer treatment advances with special focus on those highlighted by successful clinical trials, NIH consensus development conference reports, and NCI clinical alerts. For example:

  • Patterns of care studies are drawing from SEER registry data to study adoption of recommended treatments for breast and colon cancer. These ongoing studies and the Cancer Care Outcomes Research and Surveillance Consortium (CANCORS) are expected to provide the basis to evaluate cancer treatments, quality of care, and their effect on quality of life and other patient-centered outcomes.


  • We have also supported projects focused on the economics of cancer and on using claims data for evaluation of cancer health services.

We have been using modeling to study the impact of interventions on cancer trends at state, local, and national levels through support of the Cancer Intervention and Surveillance Modeling Network (CISNET). CISNET modeling:

  • Explores the causes of cancer incidence and mortality trends.
  • Analyzes whether recommended interventions are working.
  • Predicts the impact of new interventions.
  • Studies optimal control strategies.

As requested through state health departments and American Cancer Society (ACS) divisions, and in collaboration with the Centers of Disease Control and Prevention (CDC) and ACS National, we are building relationships between cancer control planners and CISNET to model the impact of disseminating effective interventions on cancer trends.

We have strengthened our research among cancer survivors, assessing lifestyle and quality of life in relation to treatment and survival.

  • A seminal workshop co-sponsored by public and private organizations examined the role of physical activity across the cancer continuum.
  • An NCI-funded study - Health, Eating, Activity, and Lifestyle and Breast Cancer Prognosis - investigated these factors among ethnically diverse breast cancer survivors.

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Development, Delivery, and Improvement of Research Tools

To better track emerging trends in cancer and apply the data to reduce the national cancer burden, we have been providing new tools for exploring patterns and generating hypotheses for etiologic research, which examines the causes of cancer.

The Geographic Information Systems (GIS) for cancer control, already used for database storage and mapping in conjunction with the Atlas of Cancer Mortality in the United States have been upgraded for use as analytical tools via two major additions:

  • The Geographic-Based Research in Cancer Control and Epidemiology supports use of the Cancer Atlas and GIS among other applications.
  • A collaboration with the National Science Foundation Digital Government Initiative supports method development for better visualization of data.

Cancer Profiles, an advanced statistical system for identifying areas in greatest need of cancer control activities, is being constructed in collaboration with CDC and other partners. The Web-based user-friendly design will allow people who plan, implement, and evaluate cancer control programs throughout the U.S. to identify regions matching user-specified statistical and trend comparison criteria. The system will provide high quality data that relate the effects of physical and social environments to cancer trends (termed ecologic measures).

Analytic tool kits are facilitating the use of SEER and other cancer surveillance databases. Many tool kits are currently in use, including:

New modules are being added to model a variety of cancer statistics, including

  • Joinpoint "cancer trends"
  • DevCan for "lifetime risk"
  • SaTScan for "cancer clusters"
  • CANSURV for "long term survival and cure"
  • COMPREV for "complete prevalence"
  • And modules developed with European partners to model "limited duration prevalence"

These tools make SEER and other databases easier to use and provide innovative statistical measures as well as improvements to existing measures and statistical modules.

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Improving Dissemination and Diffusion in Cancer Surveillance

To communicate and promote the use of important information about cancer trends, NCI has been improving dissemination and use of data resources and methods to the entire cancer research and care community.

We are examining the use of workshops to teach researchers how to use and apply surveillance tools and data from SEER and other sources available on the web, as well as methodological and statistical applications. Topics might include:

  • Workshops on using analytic methods for complex medical claims data in the SEER-Medicare Linked Database
  • Exploration of innovations in statistical methods for surveillance

To make analysis even more efficient, we are collaborating with public and private partners to organize and streamline data collection, statistical methods, and reporting processes. For example:

  • Starting with the Web-based statistical module CanQues, a major international publishing company is helping to make a "core engine" that can be used online to retrieve cancer statistics.
  • The Breast Cancer Surveillance Consortium and the Breast Imaging Reporting and Data System Committee of the American College of Radiology are streamlining and standardizing data collection instruments and software systems to enhance the research potential of national mammography screening data.

NCI will publish the Cancer Progress Report in December of 2001, in hard copy and on the Web,to inform the public, advocates, and other health professionals of progress in the Nation's fight against cancer, using information from recent surveillance research.

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The Plan - Studying Emerging Trends in Cancer

Goal
Expand cancer surveillance data systems, methods, communications, and training to improve capacity for monitoring progress in cancer control and to explain potential causes of cancer nationally and among diverse populations.

Fiscal Year 2003 Objectives, Milestones, and Funding Increases Needed

SUMMARY
1. Enhance and expand cancer registry data. $4.0 M
2. Enhance the quality of cancer control data. $10.7 M
3. Explore of causes of cancer, generate new hypotheses, and identify interventions. $2.5 M
4. Improve dissemination of information on cancer trends and progress in cancer control to all interested audiences. Enhance training opportunities in surveillance, health services, and applied research. $3.5 M
Management and Support $2.0 M
Total $22.7 M


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Objective 1: Improve cancer registry data by expanding Surveillance, Epidemiology, and End Results (SEER) coverage, improving the quality of all population-based cancer registries, and enhancing SEER as a research resource.
  • Refine and harmonize four new expansion registries added to SEER to meet data quality standards and use the data for reporting and for cancer control activities.
$2.00 M
  • Implement and improve SEER quality assurance procedures and use of data quality profiles.
$0.50 M
  • Increase coordination of Federal cancer registry programs through innovative information technology systems for SEER programs.
$0.75 M
  • Support innovative statistical survey research methodology and models for combining data from diverse sources of the evolving national cancer surveillance data.
$0.75 M
TOTAL$4.0 M


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Objective 2: Expand systems and methods to enhance the quality of cancer control data on risk, health and behaviors, and screening practices linked to high quality data on cancer outcomes.
  • Improve data quality and measurement of key cancer issues in national and regional data systems. Initiate data tracking systems for cancer control and treatment drugs and for over-the-counter prescription drugs and complementary and alternative therapies.
$1.50 M
  • Support development of a restricted access research data center required for linked databases containing potentially identifiable information.
$1.00 M
  • Continue supporting surveillance screening initiatives:
    • In collaboration with the Agency for Healthcare Research and Quality, develop a surveillance and behavioral colorectal cancer screening initiative to raise levels of compliance with screening and monitor performance in primary care practices.
    • Explore data systems to monitor the use and side effects of spiral computed tomography for lung cancer screening and the role of Pap smears versus Human Papilloma Virus testing for cervical cancer screening.
$3.00 M
  • Expand the Cancer Research Network as a population laboratory for evaluating progress in cancer control and care within integrated health care delivery systems.
$0.50 M
  • Collaborate with private and public partners to facilitate transition for obtaining cancer stage and care data that is not currently part of routine cancer registration.
$1.00 M
  • Update linked databases for tracking cancer care, such as the linked SEER-Medicare database, and develop new linked databases related to cancer control and treatment at the population level for people under age 65.
$0.70 M
  • Use statistical and methodological research to add to the accuracy and reliability of cancer relevant measures - including self-report and various behavioral determinants - for use in surveillance and epidemiologic research.
$2.00 M
  • Develop statistical and graphical methods, software applications, and other technologies relevant to geospatial and mapping research.
$1.00 M
TOTAL$10.7 M


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Objective 3: Expand systems and methods to enhance exploration of causes of cancer, generate new hypotheses on risk, and identify new opportunities for cancer control interventions.
  • Provide critical tools for cancer control, especially at the community level in three ways:
    1. Develop a Web-based Internet lecture series on use of Geographical Information Systems (GIS) and other data sources.
    2. Work with the National Science Foundation on use of geographical data.
    3. Develop software for visualizing disease patterns and advancing use of disease-exposure GIS applications.
$2.00 M
  • Support workshops and pilot studies on enhancing surveillance systems for research in gene-environment interactions and identifying the potential for cancer control interventions at the population level.
$0.50 M
TOTAL$2.50 M


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Objective 4: Improve dissemination of information on cancer trends and progress in cancer control and care to all interested audiences. Enhance training opportunities in surveillance, health services, and applied research.
  • Continue to strengthen local and national surveillance data dissemination for research and health policy planning, applying information technology to boost visual quality, user interaction, and clarity for a diverse audience.
$2.00 M
  • Continue the NCI Cancer Progress Report as a vehicle for disseminating summaries of cancer progress, including new measures and a 2003 feature on dissemination of cancer treatment advances
$0.50 M
  • Support training of state health department and American Cancer Society personnel in using surveillance and intervention evidence data in cancer control planning.
  • Fund existing surveillance and applied research networks and consortia to conduct intensive training programs, provide sabbatical opportunities for research professionals, and initiate and develop academic curricula.
$1.00 M
TOTAL$3.50 M


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