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.
1) SEER
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.
Conclusion
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.
