The role of the special populations networks program in eliminating cancer health disparities

Authors

  • Harold P. Freeman MD,

    Corresponding author
    1. Ralph Lauren Center for Cancer Care and Prevention, New York, New York
    2. Office of the Director, National Cancer Institute, Bethesda, Maryland
    • Ralph Lauren Center for Cancer Care and Prevention, 1919 Madison Avenue, New York, NY 10035
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    • Fax: (301)-480-1805

  • Nadarajen A. Vydelingum PhD

    1. Center to Reduce Cancer Health Disparities, National Cancer Institute, Bethesda, Maryland
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  • This article is a US Government work and, as such, is in the public domain in the United States of America.

Abstract

During the past decade, the National Cancer Institute has made significant progress in bringing to and addressing the health and other issues related to poor and medically underserved populations, racial and ethnic minorities, and residents of rural areas. A key to the institute's achievements was the development of the Special Populations Networks (SPN) program which from 2000–2005, established a deeper involvement in reducing cancer disparities than had been previously undertaken by increasing cancer awareness and creating opportunities for conducting community-based research.

A critical disconnect exists between our ability to discover new knowledge about cancer and our ability or willingness to deliver the benefits of this knowledge to all Americans. Profound advances in cancer research have contributed to increased survival and improved quality of life for the population as a whole, but some segments of the population have not benefited equally from these advances. These gaps in delivery have resulted in significant cancer health disparities that represent both a challenge for science and a moral and ethical dilemma for our nation.

Disease occurs within the context of human circumstances, including poverty, culture, and social injustice. These circumstances are believed to be the principal determinants of the disproportionate burden of cancer experienced by some groups of Americans. Poor and medically underserved populations, some racial and ethnic minorities, and many rural residents experience significant barriers to receiving cancer education, screening, diagnosis, and treatment.1 These barriers include limited access to health care, lack of or inadequate health insurance, insufficient information and knowledge, and cancer risk promoting lifestyle behaviors. Unfounded attitudes and assumptions based on race that result in unequal treatment are other critical factors associated with disparities.

Efforts to identify and address cancer health disparities in the United States began slowly. Starting in the 1970s, reports from the National Cancer Institute's Surveillance, Epidemiology, and End Results program and a growing number of peer-reviewed articles documented variations in cancer incidence, mortality, and survival according to race/ethnicity and socioeconomic status. From the 1980s and into the 21st century, landmark reports by the U.S. Public Health Service, American Cancer Society, Institute of Medicine, President's Cancer Panel, and others identified the gap between scientific advances and their delivery to those most in need as a substantial contributor to the unequal burden of cancer.

In the 1990s, the National Cancer Institute (NCI) launched 3 historic outreach projects—the National Black Leadership Initiative on Cancer, the National Hispanic Leadership Initiative on Cancer, and the Appalachian Leadership Initiative on Cancer—to address disproportionate cancer rates among specific populations. These initiatives focused on increasing cancer awareness and education, and were a good initial mechanism for focusing research efforts on these populations. In 2000, NCI sought to build on these achievements by initiating the Special Populations Networks (SPN) program, which broadened the scope of the Leadership Initiatives to include other populations experiencing cancer health disparities. This program added several new areas of emphasis: building infrastructure in underserved communities for conducting cancer control research, creating sustainable partnerships with community-based organizations and academic institutions, mentoring junior minority cancer researchers, and encouraging minority participation in clinical trials.

The SPN program established a deeper NCI involvement in reducing cancer health disparities in these communities than had been undertaken previously. At its initiation, then NCI Director Dr. Richard D. Klausner called the SPN program “one of the largest of its kind in the Federal Government.” The 18 SPN projects varied in size, scope, and target populations, but were united by a common goal to increase cancer awareness and create opportunities for conducting community-based cancer research. The projects addressed issues related to the unequal burden of cancer experienced by these communities that in effect implemented some of the recommendations contained in 2 Institute of Medicine monographs2, 3 and the report of the Department of Health and Human Services' groundbreaking Cancer Health Disparities Progress Review Group.4

The many achievements of the SPN program are well documented in this special issue of Cancer. The findings described herein attest to the remarkable efforts by the SPN investigators, and overall, to how the program can serve as a model for engaging communities in cancer health disparities reduction. The climate of trust that has developed in many of the SPN communities—overcoming decades of deep mistrust of medical research and the health care delivery system—may be 1 of the program's most important achievements. Among the benefits of this newly won trust are a growing community understanding of the benefits of cancer prevention, early detection, and treatment; the ability and willingness of community members to participate in designing research projects to address local cancer problems; and the potential for marked improvement in recruiting and retaining volunteer participants in cancer prevention and treatment clinical trials.

Although the SPN program ended in March 2005, the program continues in a new form, the Community Networks Program (CNP). The lessons learned and best practices of the SPN program are being carried forward and incorporated into the CNP, enriching the new program and reinforcing the gains achieved over the past 5 years. Through the CNP, for example, more work will be done to increase awareness and educate communities about cancer prevention and further develop the cadre of new researchers from underserved and minority populations who will participate in community-based research to reduce disparities. CNP grantees also will be responsible for working in the areas of policy, access to care, and evaluation as part of the overall goal to reduce cancer health disparities. Evidence-based data from the CNP will be provided to local and national policy analysts, policy makers, and decision leaders to help sustain the benefits and viability of these community-based projects over time. Grantees also will leverage non-Federal funds to support the continuing development of community infrastructure established by the SPN and CNP programs. Likewise, the CNP can be expected to stimulate the formation of many other new health disparities-related programs in their respective regions.

We clearly have made progress in bringing attention to and addressing the health and other issues related to poor and medically underserved populations, racial and ethnic minorities, and residents of rural areas. The elimination of cancer health disparities is now a nationally recognized priority. More research is needed, however, to advance our understanding of how populations and geographic areas differ and how best to address differences that impact disparities. Additionally, accurate data are needed on the economic impact of disparities to provide policy makers with evidence that programs addressing disparities not only will eliminate suffering, but may help control health care costs.

In tandem with continued research, an even more urgent moral and ethical imperative requires that we act now to ensure timely delivery of cancer information and knowledge and the best available cancer care to all people. The challenge is to universally apply what we know at any given time, particularly in geographic areas of excess mortality, and to deliver cancer-related services to people with access problems. Geographic areas with excess cancer mortality, in fact, might best be treated like natural disaster areas to help ensure the timely delivery of quality standard care to those most in need.

The SPN program, and now the CNP, have been important steps toward a concerted national effort to reduce and eliminate cancer health disparities. But we still have far to go to ensure that Americans in all communities receive the cancer information and cancer care they need to confront and prevent this disease. By leveraging our combined knowledge, experience, creativity, and resources, all of us in the fields of cancer research and health care delivery can build on the SPN's successes to create effective and sustainable programs to reduce suffering and death due to cancer throughout the United States.

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