Brenda K. Edwards, PhD, Associate Director, Surveillance Research Program
NCI’s Surveillance Research Program (SRP) has played a vital role in defining and establishing the national cancer surveillance systems, not only as a catalytic force but also as the source for substantive technical expertise that constitutes the system’s foundation. Significant changes have taken place in the past decade, representing a stronger and more vital infrastructure, enhanced collaborative alliances among federal and private partners, expanded coverage, and improved cancer-specific health information for all Americans. These changes have included considerable growth in the development of statistical tools and applied technology to enhance the use of surveillance data in the control and reduction of cancer.
Defining and Codifying Surveillance Research
Ten years ago, NCI’s perspective on a comprehensive system that measured the cancer burden throughout the cancer control continuum was considered a desirable but unattainable goal. However, after a decade of planning and expert review performed in collaboration with many partners, a national framework for cancer surveillance is now in place, and accomplishing this goal is within sight. Today, population- based cancer registries—including NCI’s SEER Program—are central components to surveillance research and cancer control. This comprehensive system has evolved to combine information on the cancer patient with other factors such as risk, clinical care, economics, survivorship, and societal influences.
Building on a Strong Foundation
As a mature 30-year-old program, SEER is a source of information on long-term national trends. It is the only source for population-based data on cancer survival and prevalence. Its coverage has grown from nine geographic areas in 1973 to 18 at present, representing 26 percent of the U.S. population. This coverage complements the National Program of Cancer Registries (NPCR) managed by the CDC. Collaborative reports from SEER and NPCR are issued annually, an accomplishment resulting from the work of many people and professional groups, including hospital-based registry programs that form the critical building blocks of population-based registry systems.
SEER has been in the vanguard of setting standards throughout its existence, sharing its reservoir of technical expertise with others to make the national cancer registry programs a reality. SEER’s most notable recent activities include publication of the Collaborative Staging Manual jointly with the American College of Surgeons Commission on Cancer and the NPCR. Collaborative Staging requires that a carefully selected set of data items be used by all central and hospital registries in the U.S. and Canada, making possible the largest compilation of cancer registry data ever achieved. In addition, deployment has begun of a new Data Management System within SEER to facilitate the collection and reporting of new cancers. SEER*Rx, an interactive database of antineoplastic drugs was released in July 2005. The application was developed as a one-step lookup for coding oncology drug and regimen treatment categories in cancer registries. By standardizing ways in which information is collected and processed, these projects have brought SRP closer to its informatics objectives.
Other important releases over the last year include the first monograph to collect detailed information about cancer incidence and outcomes in adolescents and young adults (AYA), 15 to 29 years of age. It was developed to gather population-based incidence, mortality, and survival data specific to cancers that occur in the AYA population, along with epidemiological data and risk factors for the development of age-specific cancers. We believe this monograph will help educate medical providers and the public about cancer incidence and survival in this age group, and provide the impetus for further research to improve the survival and the quality of life of these young people. Another monograph presents information about cancer incidence for populations in Cyprus, Egypt (Gharbiah Region), Israel (Jews and Arabs), and Jordan for the period 1996-2001. In 1996, the Ministers of Health for those countries and the Palestinian Authority (PA) signed an agreement to establish the Middle East Cancer Consortium (MECC). Turkey joined the Consortium in 2004. This is the first comprehensive publication of the MECC Cancer Registration Project.
To better monitor the differential cancer burden experienced by various population groups, SRP joined with the Applied Research Program in 2004 to commission "Methods for Measuring Cancer Disparities: A Review Using Data Relevant to Healthy People 2010 Cancer-Related Objectives," which delineates and documents potential ways to define and monitor cancer-related health disparities. In addition, the targets for the HP 2010 cancer objectives are being evaluated by the Cancer Intervention and Surveillance Modeling Network (CISNET), a cooperative group of grantees funded to model cancer trends as a function of cancer control interventions and optimal cancer control planning.
Poised to Meet the Challenges of the Next Decade
Just as cancer trends will change, the cancer surveillance research program at NCI will continue to evolve in form and substance. We will continue to maintain high-quality data systems and utilize advances in information technology. We will develop additional innovative methods and statistical models for interpreting measures of cancer control at the individual and societal levels. These include a continuing interest in geospatial approaches to the analysis of cancer data, including new methods for data visualization. A workshop on geographic information systems was recently held in collaboration with the Library of Medicine, during which we solicited programmatic input from users of our geospatial products.
Additional approaches for user-friendly communication of cancer data are being designed for the broadest possible dissemination. The latest statistical techniques are readily available in our analytical tools and applications software, and they are easily accessible through a number of Web sites. SRP sponsored another innovative workshop to advise and instruct representatives from the cancer advocacy community in the use of cancer statistics. As part of the follow up to the workshop, we will collaborate with the Cancer Information Service to develop distance learning modules for use by cancer advocates and others seeking to use SEER data in their work.
Other transagency collaborations, for example the National Longitudinal Mortality Study, provide research databases for investigations into the social determinants of diseases such as cancer. Support for State Cancer Profiles will continue to provide a Web-based system of interactive graphs and maps that facilitates greater local use of cancer data.
With improvements in both the cancer surveillance databases and their accessibility, we expect many exciting developments over the coming years.