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Statement on The Unequal Burden of Cancer: NCI Response to a Report by the Institute of Medicine by Richard D. Klausner, M.D.
Director, National Cancer Institute
National Institutes of Health
U.S. Department of Health and Human Services

Before the Senate Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies
January 21, 1999

Good morning, Senator Specter and members of the Subcommittee. I am Richard Klausner, Director of the National Cancer Institute (NCI). We are here today to discuss the important issue of the unequal burden of cancer for ethnic minorities and the underserved. Let me state at the outset that this issue is one of great moment to the National Institutes of Health (NIH) and the NCI. Indeed, much of what we know about this problem is the result of the work of the NCI. In this, as in all aspects of our mission, there is much we still do not know and much more we can do. I want to extend my appreciation to Dr. Haynes and his Committee for their report. It is a very thoughtful analysis, and we will look very carefully at all of their recommendations and discuss them, and their implementation, with our advisory bodies.

I can say unequivocally that we are making real progress against cancer. We measure progress in two ways: first, the increase in knowledge about cancer, and second, the reduction of the burden of this disease on people. I will tell you about progress in both our fundamental understanding of this disease and in our efforts to prevent it, find it as early as possible, and treat it. But first I want to say that progress made in both areas is already evident in the declining cancer incidence and death rates. Between 1990 and 1995, these rates dropped for all cancers combined and for most of the top 10 cancer sites, reversing a long-time trend of increasing cancer incidence and death rates in the United States .

After increasing 1.2 percent per year from 1973 to 1990, the incidence rate for all cancers combined declined an average of nearly 1 percent per year between 1990 and 1995. The rates declined for most age groups, for both men and women, and for most ethnic groups. The exceptions were black males, where the rates continued to increase, and Asian and Pacific Islander females, where the rates were level. The overall death rate declined an average of 0.5 percent a year from 1990 to 1995, with the declines greater for men than for women. The only ethnic group not included in the downturn was Asian and Pacific Islander females.

These decreases are good evidence of the power of this Nation's investment in cancer research and of the value of carefully conducted basic research, and clinical trials in a broad range of areas, including cancer control. We also realize that these declines, while encouraging, must be accelerated and extended so that all of our population benefits. The trends also show us that while some ethnic groups have higher incidence and mortality rates, others have lower rates, and we seek to better understand all of these variations.

Recent Advances in Understanding Cancer

As we understand the nature of cancer, we understand that it is a unique set of diseases, and that the answers to cancer are related to the most fundamental mysteries of life itself. We know that cancer is not one disease, but at least 100 different diseases that share certain features. Because of this, it is unlikely that one magic bullet will solve the problem.

The most remarkable progress in the past 25 years has been in our knowledge of cancer biology. We are dramatically extending our understanding of what is required to turn a normal cell into a cancer cell. Cancer arises when a single cell changes so that it divides continuously, released from the controls that constrain the replication of normal cells. This transformation results from changes in the function and activity of genes. Of the approximately 100,000 genes found in the human genome, the altered activities of only a relatively small number of genes are responsible for transforming a normal, well-behaved cell into a cancer cell. Identifying these cancer genes defines the central scientific hunt in cancer biology, and opens an unprecedented window into the nature of cancer. Up until now, our detection tools have lacked the sensitivity and the specificity that we must demand if early detection is to be useful and successful. Our interventions, despite their success, have, by and large, been the result of guesswork. But now, we are at a point where we can transform our approaches to cancer.

No one genetic alteration is enough to make a normal, healthy cell a cancer cell. Rather, an accumulation of changes in a relatively small number of genes during the lifetime of a cell is required. We have learned that some individuals carry a very high lifetime risk of developing cancer. This understanding has allowed us to begin describing the evolution of specific cancers from predisposition to pre-cancer to cancer. Each cancer is ultimately defined by its particular pattern of altered and normal gene activity. This unique pattern determines the cancer's rate of growth, tendency to spread, responsiveness to hormones and therapies, and also predicts the ability of a person's immune system to recognize and respond to the cancer. Moreover, cataloging these molecular patterns will ultimately tell us how many different cancers exist, and enable us to distinguish the differences between a cancer cell and a normal cell.

We also are learning to understand the causes of cancer. Research on cancer risk the probability that the disease will occur in a given population is identifying populations with a significant probability of developing cancer. Because cancer is a multistage process, analysis of risk factors leads to the development of prevention and control strategies, early detection methods, and in some cases more precise treatments. Epidemiologic research has identified many factors that increase cancer risk. Most of these are related to environment and lifestyle, while others are part of a person's genetic makeup. With the exception of a few genetic conditions, however, it is still not possible to predict with any degree of certainty that a person having one or more of these factors will develop cancer. This uncertainty is related to the very nature of cancer and the need for many specific alterations to accumulate in a single cell for that normal cell to be transformed into a cancer cell.

The Institute of Medicine Report

I take seriously my responsibility as Director of NCI to ensure that the research we carry out in our own laboratories and the research we support in facilities across the country benefits all Americans. Whether this means finding new ways to prevent cancer, improving patient access to clinical trials, or entering into new partnerships to more broadly disseminate information about advances in prevention or diagnosis or treatment, I have personally urged our staff to continuously strive to find new and better ways to accomplish our goals. We have made significant progress in many areas during my tenure as Director of NCI, but clearly this is an area where we need to do more.

NCI has three core responsibilities in addressing the issues raised by the Institute of Medicine (IOM) Committee. First and foremost, we must conduct research that answers questions about the burden of cancer for all populations. Second, we must assure that individuals of diverse populations are represented in all aspects of our research enterprise: in population studies, clinical trials, and in the oversight and conduct of research. And third, we must communicate the results of our research and the opportunities to participate to a wide range of audiences, including patients, advocates, physicians, families, health professionals, Members of Congress, scientists, and the general public, in ways that are both valid and effective.

The report developed by the IOM presents a series of findings and recommendations for the NIH and NCI related to cancer in minority and underserved populations. As one might expect, there are some items on which we agree, and there are some areas where I strongly disagree with the recommendations presented. These are not simple problems, and there are no simple solutions. Many of the issues go well beyond the scope of a single Institute at NIH, and in some cases they have at their core some of the major social and public health challenges that face our entire Nation. While we need time to digest this report more fully, let me present three reactions to my initial study of it.

Areas of Agreement

I fully agree with many of the recommendations: 1) There is a critical need to improve our ability to address the needs of the underserved. This is true in all aspects of our health care delivery system, in many of our social services, and in research to improve our knowledge of the special needs of these individuals. We have addressed aspects of this question, but the report is correct: we need good, but flexible, definitions; and we need to focus more attention on documenting, understanding and disseminating knowledge gained about this very complex area.

As pointed out in the IOM Report much of "NCI's data collection efforts are shaped by Directive No. 15 of the U.S. OMB." Consistent with this mandate, the NCI has collected and reported data according to four basic "racial" categories (American Indian or Alaska Native, Asian or Pacific Islander, black or African American, or white), along with Hispanic ethnicity. The NCI Surveillance, Epidemiology and End Results (SEER) program collects information on country of origin of the cancer patient, which provides additional data on ethnicity.

The issue of monitoring and reporting on the racial and ethnic classifications, as called for in Office of Management and Budget (OMB) Directive 15, is important. These classifications are not scientifically sound, and do not reflect the variables important to the cancer burden. NCI has gone well beyond OMB 15 in attempting to monitor the burden of cancer, for example, by linking the SEER databases to other sources of information to evaluate socioeconomic status (SES) and to look at wider sets of macro-ethnic groups. However, the importance of linking data from disparate sources (the Census, Medicare, etc.) means that this issue cannot be solved by NCI in isolation. The NCI agrees that we should strive to develop and implement uniform definitions of ethnic minorities and medically underserved groups, whether it be through the use of special populations' or other terms. Clear definitions of underserved populations are useful in categorizing and tracking research in this field and we are initiating more research in this area which extends current work. In particular, internal surveillance activity is focused on linkage of aggregate Census population data to SEER incidence and National Center for Health Statistics (NCHS) mortality data at the county level. Analyses are underway which develop alternative characterizations of geospatial cancer rates based on SES population attributes. Other developmental work is in progress which should lead to research initiatives from extramural investigators on the relationship of SES to cancer, guided in part by the recent publication by the International Agency for Research on Cancer (IARC) on social inequalities and cancer.

Cancer research must go beyond these OMB categories and SEER data, and, as I stated in my presentation to the IOM Committee, there is no biologic basis for race.' The NCI has acted on this understanding and for some time sought to collect data on specific ethnic groups beyond the OMB definitions, as evidenced by publications from the SEER program and the research initiatives it has supported. Thus, the task at hand is to develop the best measures of medically underserved to link to cancer outcomes (e.g., risk, incidence, morbidity, mortality, and survival).

The categorization of societally underserved people by their socioeconomic class, insurance status, or cultural background, is itself a subject for research. This is an area being pursued by NCI-sponsored investigator-initiated research, including some of our studies that focus on screening among underserved populations, as well as by initiatives from the Cancer Surveillance Research Program (CSRP) which address the measurement and monitoring of cancer rates based on SES indicators at the level of the individual and that person's neighborhood and community characteristics. In the fall of 1998, the SEER program hired a demographer with expertise in health data regarding racial/ethnic populations to help direct these efforts. Several new initiatives have been funded which enhance NCI's health services and economics research, particularly in regard to various managed care and other provider systems; e.g., the Cancer Research Network, the SEER-Medicare linked data base, and the Breast Cancer Surveillance Consortium.

2) We fully agree with the need to expand and enrich our surveillance programs and we are doing that , as the body of the IOM report documents. We are now awaiting the recommendation of a Surveillance Implementation Group we asked to address these complex questions.

3) We need to much more clearly articulate the planning and monitoring of our activities in these areas than we currently do.

I will state again that we will look very carefully at all of the recommendations and discuss their implementation with our advisory bodies.

Progress Has Been Made

The NCI, as pointed out in the report, has been very active in the past few years in addressing many of the issues raised. Following are examples of some of our efforts in selected areas that were addressed in the report.


Work is in progress to enhance the NCI CSRP and improve our capacity to measure the National cancer burden and our progress to reduce its impact on all Americans. The scope of the NCI surveillance enterprise covers a broad and complex range of data and data systems to measure the cancer burden. In addition to SEER's coverage of cancer incidence and survival for 14 percent of the U.S. population and significantly larger proportions of most racial/ethnic groups, the NCI utilizes and publishes reports based NCHS data on cancer mortality for the entire U.S. population. Specially-funded NCI surveys, cooperative group consortia, data linkage with national data bases, and supplements to federal health surveys are mechanisms we use to provide information on cancer risk, health behavior and health status, patterns of care and cancer outcomes, cost and quality of cancer care, and quality of life. Every surveillance research and analysis project includes an emphasis on information for different population groups. Selected examples are the recent 1998 SEER monograph on prostate cancer which includes a special chapter devoted to racial/ethnic patterns (available via the NCI web site), as well as the ongoing longitudinal SEER Prostate Cancer Outcomes Study which over-sampled black and Hispanic men.

The NCI recognizes the need to better explain the cancer burden in several high-risk ethnic minority and medically underserved populations and is concerned with research on the full diversity of the U.S. population. In 1975, 1979, 1983, and 1992, SEER has expanded to include populations critical to explaining the burden of cancer in this country. As noted in the IOM Report (page 40), these have included Hispanics, urban blacks and Asian and Pacific Islanders in Southern California and the South San Francisco Bay Area, rural African-Americans in Georgia, northwestern populations in Seattle, Arizona Indians, and Alaska Native Americans. One of the recommendations of the current Surveillance Implementation Group suggested in the NCI Cancer Control Review Group (again as noted by the IOM Report, page 40) is to further expand coverage to capture additional key populations, such as rural low-income whites, more diverse American Indian populations, rural African-Americans and other Hispanic groups. Beyond the SEER program, the CSRP is planning a coordinated co-funded effort with the NCHS and other NIH agencies, such as the National Heart, Lung, and Blood Institute to improve data collected on mortality by race/ethnicity.

2) Formulating new plans for training and career development Several activities promote the availability of research training and career development opportunities at NCI. The NCI/Minority Access to Research Careers (MARC) Summer Training Program is designed to increase research training opportunities for underrepresented minority MARC scholars entering into cancer-related research careers. Through the Comprehensive Minority Biomedical Program of NCI, the American Association for Cancer Research (AACR) provides travel fellowships for minority students to attend annual meetings of the AACR; increases the attendance of minority scientists at the annual AACR meeting; and stimulates participation of predoctoral and postdoctoral minority students in cancer research. NCI invites academic health centers and other health professional schools that employ, educate, or serve a preponderance of minority faculty, staff, trainees, and communities to submit applications for support of activities directed at the development of faculty investigators at minority schools in areas relevant to cancer. National Research Service Awards, Individual Predoctoral Fellowships for Oncology Nurses, and Minority Students and Students with Disabilities Awards encourage nursing students, students with disabilities, and students from minority groups that are underrepresented in the biomedical and behavioral sciences to seek graduate degrees.

The Continuing Umbrella of Research Experience for Underrepresented Minorities Program (CURE) is a new strategy being implemented by the National Cancer Institute to expose minorities to cancer research at the high school and undergraduate levels. The program is being initiated nationwide and provides a "continuum of competitive opportunities" through the successful established independent cancer investigator. As part of the CURE initiative, NCI is collaborating with the National Science Foundation, the Office of Research on Minority Health, the National Center for Research Resources, the National Institute of General Medical Sciences, the National Institutes of Environmental Health Sciences and the Department of Defense on a nationwide minority training and career development program known as "The Bridge to the CURE." "The Bridge to the CURE" focuses on working with Minority Serving Institutions (historically Black Colleges and Universities, Hispanic-serving Institutions, and Tribal Colleges serving native Americans) to encourage minority participation in biomedical research. These institutions, while providing high quality education for minorities, typically lack the infrastructure and institutional commitment needed to conduct high quality biomedical research. This program aims to work with the institutions on developing the infrastructure and commitment to research and become full partners in the cancer research enterprise. The IOM Committee was provided with information about this new, innovative program.

3) Setting goals for minority participation in clinical trials The appropriate participation of ethnic/racial minority patients in clinical trials has been a specific goal of NCI. Indeed, there has been a considerable effort to provide wide access to clinical trials. Participation of diverse populations is desired out of a sense of social equity and because it may provide more valid and more generalizeable results. All NCI-supported clinical trials are reviewed to ensure that access to research protocols is equitable and that no arbitrary age-specific criteria are included in any of these studies. Older patients are generally eligible for all protocols unless specific medical contraindications exist. While accrual of minority patients is proportional to the population with cancer, accrual of the elderly has been lower than desired.

4) Behavior Lifestyle and attitudes towards the health care system itself can directly and indirectly affect one's risk for cancer. Therefore, strategies to encourage change in behavior or attitudes in favor of healthier habits is an area currently under study by NCI, especially in regard to intervention research on tobacco use. NCI is conducting and sponsoring a number of programs and projects aimed at testing interventions that will motivate individuals to change their behavior with regard to smoking. Many of the studies target a specific culture or ethnic group, while others target youth with the idea that healthy habits should begin early and that children will teach their parents these healthy habits.

5) Survivorship In agreement with the IOM Report we have recognized the need to enhance the collection and reporting of data on survival among ethnic minorities and medically underserved. SEER investigators and NCI staff are currently developing a new monograph on Cancer Survival for publication early next year. In addition, methodological and data quality issues related to estimating cancer survival for racial/ethnic groups are being addressed by NCI surveillance research staff. Publication of these data is in progress, which involves staff from the Office of Special Populations Research and a senior scientist from the extramural community. Furthermore, this topic has also been identified by the Surveillance Implementation Group as a priority and is one of the recognized aspects of expanding SEER to include additional populations. Non-SEER National Program of Cancer Registries (NPCR) states currently are required only to collect cancer incidence data. One mechanism to expand SEER would be to work with National American Association of Central Cancer Registries (NAACCR) non-SEER states that include high-risk populations of interest and who have demonstrated their ability to adhere to NAACCR's quality standards and to support the addition of survival data. Other approaches, such as facilitating data linkage of the non-SEER registry states with the NCHS National Death Index, are possible.

In the recent reorganization of the NCI, the Office of Cancer Survivorship (OCS) was formed within the Division Cancer Control and Population Science (DCCPS). The Office of Cancer Survivorship was established in 1996 to provide support and a focus for research and other activities dealing with cancer survivors. OCS workshops were held in 1996 and 1997 to define priorities for research, which included the prevalence of physical effects from cancer treatment, the prevalence of second cancers in survivors, quality of life, and quality and cost of follow-up care for survivors. In addition, this Office sponsored a national meeting last year on long-term survivors and will sponsor another this March 8-9, 1999 on Research Challenges and Opportunities for the New Millennium. A formal strategic plan for this Office awaits the imminent appointment of its Director in the next month or so.

6) Targeted Funding NCI has several initiatives geared to specific groups in the community. These initiatives are intended to lead to more positive results in reducing the disproportionate burden of cancer that is apparent among various ethnic/racial groups. They include:

Through Cancer Therapy Evaluation Program's (CTEP) Minority Initiative Program, five of the Cooperative Groups received a total of $1.1 million earmarked to foster minority accrual in FY1997. These funds have paid for focus groups and educational opportunities for minority professionals, advertising to increase minority awareness of clinical trials, as well as data management, translators, and community outreach in institutions with high minority patient populations.

The National Institute on Aging (NIA) and CTEP have co-sponsored two studies, one in ovarian cancer and one in breast cancer, to determine factors that present the greatest barrier to the participation of older patients in clinical trials.

Minority Biomedical Research Support (MBRS) grants co-funded by the National Institute of General Medical Sciences and NCI provide expanded opportunities for ethnic minority faculty and students at minority institutions to participate in biomedical research through institutional grants.

The Leadership Initiatives on Cancer (Black, Hispanic, Appalachia region targeting the underserved) address the cancer-related needs within these communities through the establishment of coalitions; stimulate the involvement of community leaders; and develop and support intervention and outreach activities in these communities throughout the United States and Puerto Rico.

Through its 19 regional offices, covering all 50 states and Puerto Rico, the Cancer Information Service (CIS) supports programs according to the specific needs of each region's special populations. The successful CIS collaboration with outreach partners to reach minorities and underserved populations has focused on program planning assistance, increasing breast and cervical cancer screening for women 50 and over, and assuring community access to the latest, most accurate cancer information.

Areas of Disagreement

Although we agree in many areas, the NCI and the IOM differ in our views of the best and most appropriate way to attain very similar goals for research into the unequal burden of cancer. We have clearly stated and written in our planning documents that the pervasive issue of different burdens and different experiences of cancer in minorities and the underserved must likewise be pervasive throughout all areas of our research. We have acted to assure that we ask questions about unequal cancer burden for surveillance, epidemiology, prevention, detection, treatment, survivorship, training, and communication.

We want as many of our studies as possible to address real questions of the impact of social, cultural, linguistic, economic, and genetic factors in cancer. When a large or multifaceted study directly addresses the unequal burden of cancer, we code a fraction of the total research project costs as directed at minority and underserved research. If we only count dollars for projects that solely address questions of unequal burden, we will need to create a parallel research structure, segregated from the researchers, projects, programs and infrastructures we support for all cancer research. This is impractical and inefficient and will fail to answer many of the questions posed by the IOM report. Let me illustrate: The Prostate Cancer Outcome Study is a large community-based effort to provide new information about the reasons for variations in prostate cancer diagnostic and treatment practice patterns among varying populations. It is allowing us to ask many important questions about the detection, diagnosis, and treatment of prostate cancer. Some of these questions include whether various racial and ethnic minorities experience systematic differences. This is an example of a project that we code as including 10-20 percent of the funds directed towards answering questions about the unequal burden of cancer. It is the coding of such clearly relevant research that the IOM Committee rejects.

The IOM Committee reasonably raises concerns about coding fractions of studies and issues such as minority participation in clinical trials and other studies. We will re-examine our coding, but I do not agree that we should only code dollars for projects that only address issues of the unequal burden of cancer regardless of whether the larger projects are utilizing funds to directly, but not solely, address the issues outlined in the report. This would, in fact, exclude many of the studies that have given rise to publications that specifically address minority and underserved populations. In data provided to the IOM Committee, we compiled a list of over 740 publications over the past 10 years specifically addressing minority populations arising from NCI funded research. Of those, 81 percent were from studies that were not focused solely on minorities.

Segregation vs. Integration

NCI firmly believes that research on the cancer burden of ethnic minorities and medically underserved populations must to the extent possible be woven into the full fabric of our research. There are times when studies should be and are within subgroups. But to segregate research this way would isolate the data we obtain; limit our ability to compare with the full population; and restrict our discovery of trends within subgroups that may only be discerned across the general population. There are very real statistical difficulties when study participation is small, so general population studies greatly improve our ability to decipher results across the various groups, so that all groups benefit from the knowledge we gain. In these large investigations, questions relevant to minority and other subgroup populations are encouraged and supported. Finally, integrated research provides efficient use of resources and higher quality of study design, as compared with conducting the same study for each subgroup. Larger, integrated research studies also have the benefit that compliance problems, which can be crippling in some studies, are not as critical to the study's outcome.

Priority Setting

Setting NCI's funding priorities is a complex and dynamic process driven by several principles. We recognize that we must support the full range of research activities necessary to confront cancer; therefore, we strive for a "balanced" portfolio of research. This balance must include attention to all of the distinct diseases we collectively refer to as cancer, and to all of the various populations that experience these diseases differently. NCI places a high value on the incorporation of scientific questions relevant to ethnic minority and medically underserved populations in the full spectrum of our research.

Resource Allocation

In 1997, NCI spent an estimated $124,399,000 on minority research programs. Estimation of funding varies between clinical trials and investigator initiated research projects . Minority groups are proportionally represented in clinical trials and funding is estimated according to the accrual of the study population by racial/ethnic groups. This method may not always equate to a proportional benefit for the larger minority population from which the trial participants were drawn but has the benefit of being consistent across time periods and provides a measure that is comparable with other per capita measures of clinical trials. Investigator initiated research projects estimate funding according to each individual project's relevancy to minority health as determined by the project Director and the Office of Special Populations Research. Although this method is highly susceptible to variability, it is felt to be a conservative measurement of NCI funding for minority health research because minority populations participate in many projects that are not considered minority research but require minority participation due to NIH requirements for racial/ethnic diversity.

Strategic Planning

Contrary to the implication in the IOM report that NCI does not engage in strategic planning, I can state unequivocally that we have a very active, dynamic, and visionary planning process. The IOM Committee was provided with copies of a document entitled "Priority Setting at the National Cancer Institute: A Summary Report Updated February 1998" which contains a detailed description of NCI's strategic planning process, as well as with copies of other documents relevant to planning such as reports from various groups reviewing NCI's major programs. We involve a very broad constituency of advisors, advocates, researchers, and practitioners in developing our plans. Further, the Bypass Budget serves as a two-year strategic plan, describing the areas of scientific advancement we believe merit funding to enhance research, training, and communications programs. It serves as our central planning document, laying out clearly our funding priorities. It represents the investment needed to take the next crucial steps toward the day when cancer is no long a burden. We also do in-depth strategic planning in specific areas. For example, we recently completed development of our Tobacco Research Implementation Plan and the development of a Surveillance Implementation Plan is in progress.

NCI has a long history of making frequent use of extramural experts and advisors to determine its forward motion. There have, in fact, been three comprehensive reviews in the last two years that have recommended strategic initiatives relevant to research among ethnic minority and medically underserved populations. Recommendations from these groups have generated the creation of strategic implementation groups at NCI which have outlined strategies that are being followed in all of our programs.

Thus we have a different approach to strategic planning than envisioned by the IOM Committee. Contrary to its assertion that because we explicitly plan for the issues of the unequal burden of cancer within the context of our overall planning, there is therefore no planning, we believe that our approach is a valid, honest and effective alternative to the approach it is calling for.

The Role of the NCI Office of Special Populations Research

The Office of Special Populations Research advises the Director of NCI and serves as a focal point to provide leadership and coordination on research related to America's special populations. The Office coordinates NCI programs addressing scientific questions pertinent to minority and ethnic populations as well as the elderly, the medically underserved, rural and low-income groups. The Office works closely with other NIH Offices interested in the health and welfare of special populations. The expertise of individuals, scientific and lay, from the community is also being sought through the establishment of an NCI Special Populations Liaison Working Group. This Office has also recently completed a summary report on research and program activities related to minorities and the underserved titled "NCI Initiatives for Special Populations 1998" which will be available the week of January 25, 1999 on the NCI website.

Evaluation of Information Dissemination

The NCI plays a vital role in the dissemination of cancer research information/results to minority and underserved populations. Communications are carefully and strategically planned to achieve the following goals: dissemination of new research information for cancer prevention, screening, detection, and treatment to minority and medically underserved populations, health care providers, federal agencies, and the general public; and coordination of cross programmatic areas with other agencies (i.e., Centers for Disease Control and Prevention), while addressing concerns such as targeting low-literacy populations.

NCI achieves these goals through strategic communications planning, and integrates communications to minority and underserved populations within each of its overall efforts. NCI targets its audiences uses appropriate dissemination channels for each audience, develops and disseminates appropriate messages and materials through mass media campaigns, and through partnerships with other federal and non-governmental agencies and organizations that have special access to the target audiences.

The NCI develops media and print materials designed for distribution to a variety of audiences to achieve objectives/goals set forth in the strategic plan. Some of these collateral materials are designed specially for minorities and the medically underserved and are often implemented as part of national campaigns. These materials support the main message of a campaign (for example, women over age 40 should have regular mammograms) but are designed to be used by community leaders to target populations including African Americans, Hispanics, Asians, and Native Americans.

Other collateral materials for minority populations include posters in English for African-American, Asian, and Native American women, and in Spanish, Vietnamese, Chinese, and Korean that encourage women to have mammograms. In addition, NCI developed a Pap test video for Native Americans, radio and television public service announcements encouraging African-American women to have mammograms, English and Spanish print public service announcements promoting good nutrition. NCI also contributed to a nationally syndicated Spanish radio show, hosted by Elmer Huerta, promoting breast and cervical cancer prevention and detection.

Printed and audiovisual materials that are easy-to-read, culturally appropriate or in Spanish are disseminated through the Cancer Information Service outreach program, through direct mailings to minority advocacy groups and partners, through minority media, and through national, state, and regional community-based health providers, cancer prevention experts, and health care professionals. Special media promotions are also conducted. One example is the effort to increase awareness about clinical trials by placing stories in the minority media. More recently, we have funded a number of investigators who are developing tailored health communications. Some of these investigators have designed materials tailored to specific variables, including ethnicity, income, and gender. Research shows that tailored materials used in a community health center dramatically increased smoking cessation among poor African Americans; decreased fat intake in a diverse population; increased mammography among African American women with incomes below $26,000; and increased fruit and vegetable consumption among rural African Americans who participated in a church-based project.

Cancer Information Service (CIS)

The CIS program has three interrelated components: 1) telephone service; 2) outreach aimed at providing cancer information to those who do not use the telephone to gather information (primarily minorities and other underserved audiences); and 3) cancer control research.

The CIS Outreach Program develops partnerships with gateway.html, private, and Government agencies, mostly at the local and regional levels. These local and regional partners have an established presence in their regions, are trusted within their communities, and are dedicated to serving minority and underserved populations.

Outreach staff respond to 100,000 requests by 4,500 organizations annually. Two-thirds of these CIS partners focus on reaching minority audiences.

More than three-quarters of CIS partners strive to reach medically underserved audiences.

In a 1996 survey of CIS partner organizations, over 90% rated the service provided by CIS to be important to meeting the goals of their projects.

In the next year, CIS will require that 80% of all contacts initiated by Outreach staff be with partners that work with minority and medically underserved populations.

The CIS is in the process of developing a comprehensive outreach evaluation plan which will better measure the impact of our efforts with partners serving diverse communities.

Through the CIS, we have tested new ways to encourage African Americans to call the CIS for help to quit smoking. These methods have included targeted radio outreach and have been effective.

Physician Data Query (PDQ)

Patients and health care professionals want and need access to accurate, up to date, comprehensive information about ongoing clinical trials. Through PDQ, NCI provides information about NCI-sponsored trials. PDQ presents information in both English and Spanish. It can be reached via a computer or fax machine. Information about clinical trials is also available through the CIS.

We are in the process of expanding the database, with the cooperation of patient advocates, the Food and Drug Administration (FDA), and the pharmaceutical industry, to include all cancer clinical trials approved by the FDA and to revamp the way information is presented. This system has served as a model for other institutes at the National Institutes of Health, and we want to ensure that it continues to be responsive to the needs of the all of the communities we serve.

Patient Education Activities

The National Cancer Institute's patient education programs are designed to enable cancer patients to make informed decisions about cancer care, deal effectively with cancer treatment, side effects, and recurrence, and adjust to a life with cancer. Because the medically underserved and minority populations must overcome both socioeconomic and cultural barriers to cancer information and treatment, as well as higher incidence rates, and often have more advanced disease at the time of diagnosis, special efforts have been made to ensure that the educational and informational needs of these groups are addressed by NCI's patient education programs.

Examples include:

Development of print and electronic informational resources for non-English speaking audiences, as well as groups with low literacy ability. Several of NCI's core patient education resources are available in Spanish, and plans are in development to produce Chemotherapy and You and Radiation Therapy and You in ten languages.

Testing and conduct of training for health professionals. A new NCI training program for health professionals, The Cancer Clinical Trials Education Program, was pilot tested with numerous minority audiences, and their input and feedback ensured that the program would meet the varied cultural, economic, and educational needs of diverse groups, including the suggestion and execution of slides for Asian-American, Hispanic, and African-American audiences. Involvement of these partners in the development of the program has resulted in programs that support the NCI's interest in increasing population diversity in clinical trials participation.

The Cancer Journey: Issues for Survivors, a training program for health professionals, includes a thirty-minute videotape of cancer survivors discussing the range of issues they faced from the time of their diagnosis through treatment and follow-up care. The videotape includes an ethnically diverse group of patients to assure that the program can be used by educators with multiple audiences. Initial feedback confirms that the program is being well-received.

Consumer Research and Evaluation

NCI always includes an evaluation component in its strategic communication planning efforts. Formative and process evaluation techniques, including focus groups, omnibus surveys, in-depth telephone interviews, and bounce-back card analysis allow NCI to gauge the knowledge, attitudes, and behaviors of minority and underserved audiences in order to focus program efforts and develop effective messages.

Seeking Input for NCI Activities

NCI actively reaches out to receive input on research programs and its overall research agenda from affected minority and medically underserved communities, their health providers, and advocates.

For example, the NCI Director's Consumer Liaison Group (DCLG), multicultural in its membership, helps NCI involve advocates from minority organizations and representatives of underserved populations in a variety of NCI activities. One of the DCLG's activities was to involve such advocates and representatives in a number of advisory and working groups at NCI. These included the Clinical Trials Implementation Group and the Progress Review Groups, which assist in defining and prioritizing the national research agenda for particular cancer sites, including breast, prostate and lung cancers.


The NCI must, as I have said, written and acted on, address the questions of the unequal burden of cancer. To act on the many excellent recommendations will require additional resources. It is important to remember that the root of the unequal burden of cancer is, in part, a reflection of unequal resources, access, power and opportunities in our society. Ultimately, this unequal burden will only be readdressed by taking responsibility to correct both historic and persistent inequities. I say this not to shirk responsibility, but to reinforce the IOM Committee's position that NCI alone will not solve the question. We have been and are committed to better addressing our responsibilities, as outlined earlier in my remarks, relevant to reducing the unequal burden of cancer.

I will be happy to answer any questions.

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