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The National Cancer Institute (NCI) has developed mechanisms to broaden participation by minority institutes and individuals in cancer-related research and training activities. NCI seeks to enhance the effectiveness of cancer treatment and control programs in reaching the minority community and other historically underserved segments of the general population.
Minority Accrual to Clinical Trials:
A number of factors are potential barriers to minorities participating in clinical trials. Economic and geographic constraints, foreign language barriers, cultural reluctance to seek early medical attention and/or experimental therapy for cancer, and possible physiologic differences, may explain why racial and ethnic minority patients tend to survive for a shorter time after cancer diagnosis than the national average. As part of a multi-faceted NCI plan to improve access to minority participation at all levels of cancer research, the Cancer Therapy Evaluation Program coordinates interrelated clinical programs. The individuals intended to benefit from these programs are Americans of African-American ancestry, Hispanics of Mexican, Puerto Rican, Cuban, or Central American descent, Asian- Americans, and Native Americans, including Alaskans and Hawaiian natives. Eight Cooperative Groups (NSABP, GOG, CCSG, NCCTG, SWOG, RTOG, CALGB, and ECOG) have developed plans to encourage early diagnosis and clinical trials participation among potential patients and to overcome language and logistic barriers for specific minority groups.
Special Populations Studies:
For special populations who experience high cancer rates and are underserved in terms of cancer prevention and control programs, NCI supports initiatives which focus research on interventions designed to address such barriers as cultural and behavioral nuances unique to special population groups as well as obstacles within the health care delivery systems. A study of the impact of socioeconomic status on cancer risk and survival promises to provide information on more effective delivery of cancer intervention programs. In addition, a cancer mapping program will assist local health officials to better target cancer services to such populations. Special populations research also investigates primary prevention interventions designed to meet the specific needs of these groups. Support for several cancer control networks has allowed channeling of cancer prevention and control information to stimulate interest from culturally sensitive researchers to address the unique needs of special populations.
Etiologic studies are aimed at identifying factors that place specific minority groups at unusual risk for cancer. For example, a series of population-based case-control studies is evaluating possible reasons for African-Americans having higher rates than Caucasians for multiple myeloma and cancers of the pancreas, esophagus and prostate, and to estimate the extent to which race-specific factors may explain these differences. A major prospective study has been launched to evaluate cancer and other health outcomes among farmers and their families, and will include a study site in North Carolina with a large African-American population. Another project is being designed to develop resources for evaluating cancer risks among migrant and seasonal farm workers, with special efforts to include Hispanic and other underserved groups. Studies are also underway to clarify risk factors responsible for the high rates of lung, stomach, oral and cervical cancers among specific minority populations.
Minority Statistics:
NCI's Surveillance Program continues to expand and refine the data collection and analyses of minority populations. Efforts to increase population coverage of Hispanics continued in 1993 and similar efforts are being undertaken for other racial and ethnic groups, low-income populations and the elderly. Expansion of the Program in FY 1992 increased coverage to approximately 14 percent of the total U.S. population. The two new areas included, Los Angeles County and four counties in the San Jose-Monterey area south of San Francisco. The population of Hispanics in these two areas is nearly four million which brings SEER coverage to 22 percent of the total Hispanic population residing in the U.S. This expansion increased coverage of minority populations, notably Asian and Pacific Islanders and African Americans. In addition, 3,400 patients are being followed for survival in the Black/White Survival Study, which was designed to investigate the significance of social, behavioral, lifestyle, biological, treatment, and health care factors as contributors to the observed differences in survival among Black and white cancer cases. Also underway are efforts to describe the cancer incidence and mortality in Alaskan Natives and American Indians as well as the patterns of care, risk factors, and cultural entities that form barriers to early detection and treatment of cancer in these groups.
Minority-Based Community Clinical Oncology Program (MBCCOP):
Supports the development and implementation of effective cancer control and treatment strategies in minority populations by including these groups in clinical trials research as well as provides minority cancer patients with access to state-of- the-art cancer treatment and technology. MBCCOPs are located in seven states and Puerto Rico and are funded through 1994 involving over 275 physicians. Nearly 1,000 patients have been enrolled onto cancer prevention, control, and treatment clinical trials through this program.
Minority Health Professional Training Initiative (MHPTI):
Initiated in 1991, the MHPTI is supporting training and career development opportunities for minority health professionals by engaging them in cancer research or by providing them with training in subspecialities related to cancer. Such opportunities will increase the number of minority clinicians, clinical researchers, and other health professionals who are prepared to deal with the problem of excess mortality among minority populations due to cancer. As the result of three Requests for Applications (RFAs) published in 1992, four awards to minority clinicians were made. The program has continued through program announcements and two additional awards which were approved for funding in 1993.
Cancer Communications:
To promote clinical trials to minority and low literate target audiences, special training will be designed for NCI staff, educational resources for patient audiences will be developed, and training programs and resources will be designed for health professionals. Preliminary work has begun on the development of easy-to-read consent forms and this work will be expanded. Future efforts will involve continued work with the clinical trials cooperative groups in efforts to address the recruitment of minority patients.
The Cancer Information Service (CIS) awarded 19 new five year contracts which assure regional CIS services will be provided to the entire US population. The CIS Outreach Coordinators work with NCI-designated programs to tailor NCI messages and initiatives to local populations, with a special focus on minority populations. As part of CIS's outreach function, regional offices develop relationships with programs at the regional and state levels to promote knowledge of cancer control and education activities and to provide technical support and materials within the service area. Many designated programs are specifically concerned with minority health including: CCOPs (including the Minority CCOPS), NBLIC, ALIC and NHLIC, CDC Breast and Cervical Cancer Screening Grantees, and State Health Departments. In addition, it is the role of the CIS Outreach Coordinators to act as advocates for minority and low literate populations when working with Comprehensive and Clinical Cancer Centers, Patient Educators Network, and Data-Based Intervention Research Grantees on regional initiatives. The outreach efforts of the CIS also includes working with minority media and mass media with messages of interest to regional minority populations.
Existing resources for patients and health professionals are continually revised. The special needs of minority populations and low-literate groups are incorporated in the revision of all resources and the development and design of new resources.
The NCI's Comprehensive Minority Biomedical Program (CMBP) continues its efforts to heighten awareness about cancer risk and prevention in African Americans. The aim of this undertaking is to develop and disseminate information through educational programs regarding steps that can be taken to control or reduce cancer in African Americans.
The NCI's CMBP has issued an RFA inviting research grant applications from interested investigators with access to large or predominantly minority populations. The Minority Enhancement Awards would promote minority group participation in cancer research with a special focus on cancer control research. Support provided by this initiative would broaden the operational base of each institution by: expanding cancer control and prevention efforts in early detection, prevention screening, pre-treatment evaluation treatment, continuation care, and rehabilitation; increasing the involvement of minority population primary care providers early in the course of clinical treatment research; promoting the involvement in treatment research at the institutional level with a focus on the development of treatment protocols for cancers that have a high incidence in minorities; supporting programs involving diet and nutrition cancer control activities.
NCI continued to expand its African American Cancer Education program -- "Do the right thing...Get a new attitude about cancer." "Do the right thing" urges African Americans to adopt a "new attitude" and make some simple lifestyle changes as crucial steps toward maintaining good health.
NCI also continued distribution and promotion of the Hispanic Program Kit "Hagalo hoy...Por su salud y su familia," which focused on early detection of breast and cervical cancers. The kit, developed for community leaders and organizations serving the Hispanic population, serves as a resource for community leaders to develop cancer equation programs, particularly for breast and cervical cancer. The kit contains education materials such as brochures and factsheets that can be used for community events such as fairs, workshops, meetings and conferences. It also contains articles and camera-ready graphics to be used for local media placements. Short and simple breast and cervical cancer bilingual brochures were printed in large quantities for mass distribution.
Project Awareness is a collaborative program designed to provide underserved women with breast cancer education, mammography, clinical breast exams, and followup medical care. It was completed in 10 cities including: Washington, D.C.; Detroit, Michigan; Los Angeles, California; Baltimore, Maryland; Atlanta, Georgia; Raleigh/Durham, North Carolina; St. Louis, Missouri; and Miami, Florida. Evaluation data on the effectiveness of the education campaign is now being completed. A revised program manual has been produced and will be available to interested cities. The community-based model is now being used by the YWCA in cooperation with the CDC to institutionalize the program. The Cancer Information Service (CIS) and National Black Leadership Initiative on Cancer (NBLIC) will "co- chair" local efforts providing media relations and technical support as needed.
NCI continued distribution and promotion of the half-hour television special and public service announcements on mammography "Una Vez al ano...Para toda una vida." The TV special was developed as a tool for educating Hispanic women on the need for breast cancer screening. "Una vez..." aired on the Univision Spanish- language television network for the second time during Breast Cancer Awareness Month in October 1993. Over 8,000 copies have been distributed to organizations serving the Hispanic population in the United States and Puerto Rico. The film is also being used widely by the Centers for Disease Control and Prevention Breast and Cervical Cancer Grantees, State Heath Departments, the Puerto Rico Department of Health, and by many units of the American Cancer Society.
The NCI produced a 9-minute video entitled, "Taking Control of Your Health: The Pap Test and Cervical Cancer." This video is the first culturally-appropriate, intertribal video on cervical cancer for Native American women. Clear, simple language is used to give an overview of the cervical cancer problem among Native American women (many times more prevalent than in the population at large), an explanation of the Pap test, recommendations for screening, and ways that women may be able to protect themselves from the disease. Women of all ages are addressed in the video, from sexually active teens to women past menopause. The film was premiered at a national meeting of Native American women. The film in conjunction with its original musical score and support materials will be distributed through Native American intermediaries.
Several basic print brochures on cervical cancer were developed and tested for special audiences including low literate, African American and Hispanic women.
A tipsheet on how to quit smoking for African Americans and a bilingual piece for Hispanics were developed and widely disseminated during National Minority Cancer Awareness Month and throughout the year.
NCI collaborated in the revision and update of the "Guia para dejar de fumar," a smoking cessation guide developed by the University of San Francisco Network on Hispanic/Latino Tobacco Control Program. The Guia will be printed by the NCI and be part of the Hispanic Education Program resources.
NCI developed and tested nutrition education materials for low literacy segments of specific ethnic populations. These populations include American Indians, Alaskan Natives, Hawaiian Natives, Chinese, Filipino, Vietnamese, Hispanics, African Americans, and Caucasians. A total of 43 pieces have been developed which include tipsheets, booklets, posters, and scripts for three video and one audio tape. Some of these materials are bilingual and are currently being pretested with appropriate groups across the country. A guide for physicians, "Teaching Your Ethnic Patients," is also being developed. These materials will be available in the Fall of 1994.
The "Down Home Healthy Cookbook" was developed by NCI in conjunction with two nationally known African American chefs. They worked with the NCI by taking recipes that are popular among African Americans and making them lower in fat and sodium. This cookbook is being used by numerous African American organizations in their nutrition education programs. The regional CIS offices have been working with local intermediaries for distribution of the booklet.
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