1629 Four Corners Research Consortium for Native Americans and Cancer Research Kyle L. Osborn, B.s.’ Sally M. Davis, Ph.o.2 Marty Slattery, ~ h . 0 . ~ Anna Giuliano, Ph.D.4 Nicolette 1. Teufel, Ph.D.4 Jennie Joe, m.4 Cheryl Ritenbaugh, ~ h . 0 . ~ ’ University of Colorado Cancer Center, Denver Colorado. University of New Mexico, Albuquerque, New Mexico. University of Utah, Huntsman Cancer Institute, Salt Lake City, Utah. University of Arizona Cancer Center, Tucson, Arizona. Cancer morbidity and mortality in Native Americans in the Southwestern fourcorners region of the United States (Arizona, Colorado, New Mexico, and Utah) is of critical concern to public health workers, health care providers, cancer researchers, and Native American communities of the region. As a follow-up to the national conference in Seattle, Washington, representatives from the Arizona, Colorado, New Mexico, and Utah Cancer Centers, the AMC Cancer Research Center, and the Indian Health Service participated in a regional conference on September 26, 1995. The primary reason for the “Four Corners Consortium” meeting was to assess cancer research activities in each state and to determine how Native American cancer research could be organized in the four-state region. One interest of the group was to determine strategies to explore why some cancers are more or less prevalent among Southwest Native American populations and to evaluate how the group might jointly establish research that would address the cancer needs of Southwestern tribes. Cancer 1996; 781629-32. 0 1996 American Cancer Society. KEYWORDS: North American Indians, neoplasrns/prevention and control, research, epidemiologic studies, community networks. T This article summarizes the southwest regional activities after the Native American Cancer Conference Ill: Risk Factors, Outreach and Intervention Strategies, Seattle, Washington, June 1619, 1995. Address for reprints: Kyle Osborn, B.S., University of Colorado Cancer Center, Division of Cancer Prevention and Control, 4200 E. 9th Avenue, Campus Box B160. Denver, CO 80262. Received May 31, 1996; accepted June 18, 1996. 0 1996 American Cancer Society o reinforce what was learned after attending the “Native American Cancer Conference 111: Risk Factors, Outreach and Intervention Strategies,” Seattle, Washington, June 16- 19, 1995, and to encourage proactive follow-up, the University of Colorado Cancer Center and the AMC Cancer Research Center hosted and invited representatives from the Arizona, New Mexico, and Utah Cancer Centers and the Indian Health Service (IHS) to participate in a regional conference on September 26, 1995, in the four corners region of Colorado. Each state cancer center and the IHS were encouraged to invite other key people from their regions, with the intention that both scientific and Native American perspectives would be represented. The goal of this meeting was to focus on prioritizing projects that could build collaboration between Native American community representatives and state cancer centers and to identify a common research project. The resulting “Four Corners Consortium” meeting was held with 20 Native American and non-Native American representatives discussing critical concerns of cancer morbidity and mortality in Native Americans in our four-corners region. The primary reason for the meeting was to determine how Native American research could be organized in a four-state region. One main concern of the group was to determine a way to explore why some cancers are more or less prevalent among Southwest Native American populations and how researchers might jointly go about establishing the research that would answer that question. The group discussed how to best foster and strengthen partnerships with tribal communities to address is- 1630 CANCER Supplement October 1, 1996 / Volume 78 I Number 7 sues of poor cancer survival rates and ways to prevent cancers that are more common in Southwest tribes (i.e., cervical, stomach, and gallbladder cancers). As a result, the following 11 areas of research were identified to be explored with tribal communities in the region. 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. Training. Health policy research. Primary prevention of cancer. Barriers to participation in cancer prevention and control programs. Cancer survival. Cancer occurrence. Environmental cancers. Behavioral risk factor surveys. Cancer risk factors. Studies of acquired genetic changes in tumor tissue. Studies of inherited alterations that could cause or prevent cancer. It was clear that our goal was a multiphase process, with the first phase being to learn tribal leaders’ views on these areas of research and to determine if they would be interested in collaborating. The opinions of tribal leaders and health care providers were sought to establish partnerships in the areas of mutual interest. Following the “Four Corners Consortium” meeting, tribal communities within each state were identified, and a list of tribal leaders and health care providers was compiled. A survey highlighting the above 11 areas of potential research was distributed to tribal leaders and health workers, asking that they prioritize areas of research that would be of interest in their community. On return of the surveys, the regional conference group will determine the most appropriate and/or agreed on areas of research. A second “Four Corners Consortium” meeting is being planned, which will include tribal leaders, tribal health department directors, and health care workers. The purpose of the followup meeting is to discuss tribal adoption of the most appropriate areas of research and to discuss strategies for implementing the chosen research initiatives. The “Four Corners Consortium” meeting was a refreshing first step in building collaboration between the University of Colorado Cancer Center and the three neighboring state cancer centers. Concurrently and independently, each state cancer center has had activities with and developed plans for native people in their area. The following summarizes the activities of the adjacent state cancer centers. UTAH Determining the priorities of cancer issues among Native Americans is a major focus of the Epidemiology and Cancer Control Program at the University of Utah’s Huntsman Cancer Institute. Utah researchers believe that a collaborative research program in the Southwest region should include focus groups of Native Americans to help determine what causes cancer among tribes and to determine what tools are needed (i.e., screening, education, etc.) to reduce the incidence of cancer among Native Americans. Toward that objective, Utah’s program has focused on identifying resources to faculty and staff to work with Native Americans in developing a cancer research program that addresses the needs of Native Americans. We are also in the process of identifying the most appropriate person to work with from each Utah tribe. NEW MEXICO Since the “Four Corners Consortium” meeting, the University of New Mexico has developed a New Mexico-specific tribal health directory. This directory was used to contact 19 Native American Pueblo groups in New Mexico; 1 Pueblo group from Texas; 2 Apache tribes in New Mexico; all 8 Navajo Area IHS units in New Mexico, Arizona, and Utah; and the Director of the Navajo Division of Health, for a total of 31 contacts. The survey was sent to all tribes listed in the directory to assess their interest in working with the university to identify common strategies to decrease and prevent cancer mortality in Southwest tribes. Eight completed surveys were returned. Preliminary results show that all research topics were of interest, except for genetic changes in tumor tissue and studies of inherited alterations that could cause or prevent cancer. The two major topics of interest were training followed by primary prevention. These preliminary findings represent only one fourth of those tribes contacted and may change when the other surveys are returned. ARIZONA Although disease risk factor and health behavior data are collected on a routine basis for most populations living in the United States, Native Americans have been systematically excluded from these data collection efforts. Hence, few data are available in the literature regarding prevalence of disease risk factors or the health status of Native American populations. Four programs conducted by the University of Arizona Cancer Center that provide cancer data among Native Americans in Arizona are presented in the following sections. Four Corners Research Consortium/Osborn et al. Southwest Native American Women’s Healing Circle Scant data are available on breast and cervical cancer in Native Americans. Therefore, it is difficult to establish baseline cancer screening rates before the development of state-wide cancer screening services or to develop effective breast and cervical cancer education outreach programs. To remedy this situation, the Arizona Cancer Center’s Minority Cancer Prevention and Control program is working in partnership with local tribal health departments and contract care clinics in urban areas. We have designed and implemented populationbased breast and cervical cancer knowledge, attitudes, beliefs, and behaviors surveys: one among Hopi women living on reservations has been completed, and one among Native American women living in the metropolitan Phoenix area is currently underway. Results from these studies will be used to design breast and cervical cancer education programs for several Native American communities in Arizona. To ensure long term sustainability of our educational activities, community health representatives, health educators, and public health nurses will participate in one 5-day cancer prevention workshop held in several communities. This workshop will cover the following topics: 1. What is cancer? 2. Cervical cancer. 3 . Breast cancer. 4. Nutrition and cancer. 5. Brochure writing. Breast and cervical cancer prevention public education materials in each community will also be developed. Bimonthly continuing education sessions will he used to provide additional cancer prevention information and to assist in program implementation. These community-based education outreach efforts should increase the percentage of Native American women participating in available cancer screening services and, over time, decrease cervical cancer incidence and breast cancer mortality rates. Assessing Diet-Cancer Associations in Native Americans ‘TheNative American diet is changing. Accurate assessment of usual dietary intake is critical in understanding the relationships between diet and cancer epidemiology, biology, control, and prevention. For Native Americans, such quantitative information is limited. The application of dietary data to cancer studies that do exist for Native Americans is restricted by several factors: (1) most reports are based on short term intake, (2) cultural differences in portion sizes have not been considered a significant variable, (3) micronutrient intake is not reported, (4) micronutrient content 1631 of some seasonally consumed wild foods is unknown, and (5) interreservation diet diversity limits the validity of extending results from one population to another. Within some communities, cultural and economic differences in food choices, availability, preparation, processing techniques, appropriate portion sizes, and food classification systems impair the applicability and validity of food frequency questionnaires (FFQ) used in nation-wide surveys. FFQ-based epidemiologic studies of diet-cancer associations in Native American populations are crippled by the absence of culturally appropriate dietary assessment tools. The goal of this project is to improve our understanding of diet-cancer associations as observed among Native Americans by developing a dietary assessment technique that allows Native Americans to report their usual food intake accurately. Working with tribes in the Southwest, project aims are (1) to use qualitative (focus groups) and quantitative (multiple 24-hour recalls) techniques to develop valid, reliable, and culturally competent FFQ templates that can be adapted to specific cultures, (2) to design and test a manual that outlines steps for culturally adapting the FFQ templates, and (3) to develop supportive computer analyses programs to assess nutrient intake relative to cancer risks. These tools promise to improve FFQ-based epidemiologic studies of diet-cancer associations and will assist in designing, implementing, monitoring, and evaluating preventive oncology interventions among Native Americans. The Arizona Vanguard Women’s Health Initiative Minority Clinical Center The Arizona Vanguard Women’s Health Initiative (WHI) Minority Clinical Center is recruiting Native American women to participate in the WHI. The WHI is studying factors related to heart disease, breast and colorectal cancer, and osteoporosis in women 50-79 years of age. The trial will last until 2005, but recruitment is only occurring until January 1998. The WHI includes two components, a clinical trial and observational study. The clinical trial includes a randomized trial of a low-fat dietary pattern to prevent breast and colorectal cancer and a randomized trial of hormone replacement therapy to prevent heart disease and 0steoporosis, with careful monitoring of impact on cancer endpoints. The Arizona WHI has received approval to recruit Native American women from all reservations in the Phoenix and Tucson areas and from the relevant IHS review boards. Because the WHI is focused on cancer endpoints, Native American women who volunteer to participate will receive Pap smears, clinical breast examinations, and screening mammograms. Urban Native American women and Native 1632 CANCER Supplement October 1, 1996 / Volume 78 / Number 7 American women from the Yaqui and Tohono O’odham nations are being recruited to the clinical trial. If adequate numbers of Native American women from the reservations volunteer, the WHI will be conducting diet classes and all other components of the study on the reservations. Many of the Native American women from the Salt and Gila River Reservations are already participating in an observational study of heart disease (StrongHeart). For this reason, the WHI is recruiting these women in particular to participate in the W I observational study. StrongHeart and WHI are collecting different types of information and may be able to work together in the end to learn the most about health risk factors for older Native American women. Native American Cancer Training Program The University of Washington and the Native American Research and Training Center at the University of Arizona annually sponsor a joint cancer prevention and control research course for 10- 15 students. This project, funded by the National Cancer Institute, gives priority to women who are Native American, Alaska Native, Native Hawaiian, and/or American Samoan. Recruitment is in full gear for the 1996 class. CONCLUSION The “Four Corners Consortium” meeting was the first of many steps to bridge the research interests of the four state cancer centers with the interests of the Southwest Native American populations. With the inclusion of tribal interests, opinions, and concerns in the eventual research project, the participants of the “Four Corners Consortium” will proceed with the survey evaluation of the areas of potential research. This phase of soliciting Native American perspectives in the research process was agreed to be a key factor in being able to continue, with any degree of success, with cancer prevention and control research in Native American populations. The first meeting of tribal leaders and the four state cancer centers to discuss adoption of the most appropriate areas of research to be conducted in the Southwest region is proposed for the summer of 1996.