1633 A Progress Report of Cancer Centers and Tribal Communities Building a Partnership Based on Trust Khari LaMarca, M.P.H., M.A.' Kathleen Rebstock Wiese, 8.s: James E. Pete, B . A . ~ . ~ Paul P. Carbone, M.D., D . s ~ . ( H ~ ~ . ) ~ Region 11 Cancer Information Service, University of Wisconsin Comprehensive Cancer Center, Madison, Wisconsin. Cancer Control and Outreach, University of Wisconsin Comprehensive Cancer Center, Madison, Wisconsin. Guyaushk and Associates, Bayfield, Wisconsin. I'ormer Deputy Director, Great Lakes InterTribal Council, Inc., Lac du Flambeau, Wisconsin. University of Wisconsin School of Medicine and University of Wisconsin Comprehensive Cancer Center, Madison, Wisconsin. Supported in part by the Cancer Center Support Grant 5-P30-CA14520 and the Cancer Information Service contract N01-C040539 to the University of Wisconsin Comprehensive Cancer Center from the National Institutes of Health, National Cancer Institute. Presented at the Native American Cancer Conference 111: Risk Factors, Outreach, and Intervention Strategies, Seattle, Washington, June 16-19. 1995. The authors thank the Great Lakes Inter-Tribal Council, Inc., Lac du Flambeau, Wisconsin. Address for reprints: Paul P. Carbone, M.D., D.Sc.(Hon.), University of Wisconsin Comprehensive Cancer Center, CSC K4/614, 600 Highland Avenue, Madison, WI 53792. Received May 31, 1996; accepted June 18, .I 996. ,C' 1996 American Cancer Society BACKGROUND. Over the past 20 years, considerable progress has been made in the early detection and treatment of cancer. Despite these advances, cancer incidence and mortality rates among Native Americans have not kept pace. Cancer centers are in a unique position to offer technical assistance, resources, and a long term commitment that can help address these concerns within tribal communities. METHODS. The University of Wisconsin Comprehensive Cancer Center developed a proactive plan to build collaborative partnerships with Wisconsin Native Americans. This began with an outreach plan that prioritized intervention strategies. A Native American health professional was hired to serve as liaison and advocate. Resources were committed, and staff was assigned to work with the community to develop intervention strategies that would be culturally competent and able to address the concerns of community members. RESULTS. Various collaborative activities resulted from these efforts. These included participation in Native American cancer work groups, conferences, and seminars. Most importantly, these efforts resulted in a partnership with the Native American community that is based on honor and mutual respect. CONCLUSIONS. Careful planning, prioritization, allocation of resources, and a commitment to Native Americans can result in partnerships with the community and interventions that address their cancer control needs. Building and sustaining these partnerships takes time and thoughtful exploration of issues and concerns to develop mutual trust and respect. Both cancer centers and tribal communities can benefit by recognizing that shared power, as a reciprocal value, can benefit the whole. Cancer 1996; 781633-7. 0 1996 Anierican Cancer Sociey. KEYWORDS: neoplasms, North American Indians, community health services, cancer center, information services. 0 ver the past 20 years, considerable progress has been made in the early detection and treatment of cancer.' Despite these advances, cancer incidence and mortality rates among Native Americans have not kept pace with the general population.* Life style and behavior differences, cultural values and belief systems, and socioeconomic factors are likely contributors to the differences in cancer rates and survival among races and ethnic group^.^.^ Cancer centers and National Cancer Institute (NU)-funded programs, such as the Cancer Information Service (CIS),are in a unique position to offer Native Americans informational and educational resources that can facilitate the fulfillment of needs determined by them and help build programs that address their concerns. Most importantly, centers can offer the long-term commitment needed to develop 1634 CANCER Supplement October 1, 1996 / Volume 78 / Number 7 true partnerships and collaborative endeavors that are based on mutual trust and respect. BACKGROUND Based on the 1990 Census, 39,367 self-identified Native Americans reside in Wisconsin, which represents 0.8% of the total population of 4,464,677 resident^.^ Wisconsin tribes include the St. Croix Band of Lake Superior Chippewa, Bad River Band of Lake Superior Chippewa, Lac Courte Oreilles Band of Lake Superior Chippewa, Lac du Flambeau Band of Lake Superior Chippewa, Red Cliff Band of Lake Superior Chippewa, Mole Lake Sokaogon Band of Lake Superior Chippewa, Menominee, Oneida, Forest County Potawatomi, Stockbridge-Munsee, and Ho-Chunk (Winnebago). Approximately one third of Wisconsin’s Native American population lives on one of the 11 reservations or trust lands. Cancer represents an increasingly important health problem among Wisconsin Native Americans. Cancer was the second leading cause of mortality among Wisconsin Native Americans during 19841993.6For the total Wisconsin population in 1992, the greatest number of cancer deaths was due to lung cancer, and lung cancer was the second leading cause of cancer deaths among Wisconsin Native Americans during 1984- 1993. American Indian women 45-64 years of age had significantly higher mortality rates from cervical cancer compared with white women of the same age. Although overall age-adjusted cancer mortality rates appear to be less than expected for Native Americans compared with the total Wisconsin population, existing data should be interpreted with caution. According to “Trends in Wisconsin Indian Health,” racial misclassification, underreporting, younger age of the Native American population, and migration from reservations to urban areas contribute to misleading interpretation of cancer mortality rates. The paucity of data does not allow for analyses of cancer incidence information by stage; however, mortality data support the perception that when cancer is diagnosed in Native Americans, they are less likely to survive.’ The national network of cancer centers represents a unique resource to reach minority populations with programs in cancer control and prevention, educational materials, and ethnic-specific messages. The University of Wisconsin Comprehensive Cancer Center’s (UWCCC) team of more than 200 physicians, researchers, and professional staff serves residents of Wisconsin and northern Illinois. Through laboratory and clinical research, clinical service, education, and community outreach, the UWCCC works to prevent cancer, detect it earlier, treat it more effectively, and improve the quality of life of cancer patients and survivors. The UWCCC Outreach Program facilitates the transfer of state-of-the-art knowledge and technology sbout cancer to the community. Through its programs on breast cancer, tobacco control, cancer pain management, cancer information and education, and community collaborations, the UWCCC provides the public, cancer patients, and health professionals with the information, skills, and resources they need to reduce cancer incidence and improve survival. Intervention strategies are focused on reaching unserved and underserved populations. The UWCCC partnered with the CIS, a nationwide network of 19 regional field offices supported by the NCI, to extend its reach into the community. The CIS has been an integral part of the UWCCC since the CIS began serving Wisconsin residents in 1976. Each office provides state-of-the-art information on cancer through a toll-free telephone service and through support of community outreach activities. METHODS The UWCCC outreach approach is based on the belief that health interventions within the Native American community must both strengthen local tribal authority and recognize the ability and capacity of the local community.” The goal is to develop partnerships that support community and tribal-based efforts by providing technical assistance in program planning and evaluation, data gathering and interpretation, educational materials development, and advocacy.3 The UWCCC has taken steps to build strong, collaborative partnerships within tribal communities that will increase tribal capacity relative to cancer control issues and ultimately reduce barriers to the prevention, early detection, and treatment of cancer. The UWCCC has committed both staff and financial resources to these efforts. A Native American health professional was hired in 1994 to serve as liaison and advocate between the cancer center and tribal members. This commitment demonstrated a willingness to honor and build substantive relationships with tribal communities and to do so in ways that were sensitive and appropriate to Native Americans. Concurrent changing attitudes and priorities within the tribes facilitated opportunities and a readiness to draw cancer prevention and control into the circle along with other important tribal concerns. The Great Lakes Inter-Tribal Council (GLITC)was awarded American Stop Smoking Intervention Study project funds in 1993 from the Wisconsin Division of Health (WDOH) to develop a culturally competent tobacco control project that highlighted the differences be- Cancer Center and Tribal Partnerships/LaMarca et al. tween sacred use versus abuse of t o b a c ~ o Around .~ the same time, state public health organizations and cancer-related agencies and organizations began to seek the input of Native Americans on cancer issues and to work proactively with tribal leaders to increase community interest. Finally, respected tribal elders diagnosed with cancer began to share their cancer experiences with members of their communities.“’ These various emerging issues prompted the Wisconsin Tribal Health Director’s Association to support an initiative of the GLITC to gather cancer data and information on Wisconsin’s Native American population. The Cancer Development Initiative (resolution 5-16-95-B) was unanimously passed in 1995 and led the way for substantive activities on cancer prevention and control within tribal communities. RESULTS Careful planning, prioritization, allocation of resources, and a commitment to the Native American way resulted in various collaborative endeavors between the Native American community and the UWCCC. Each of these activities required varying levels of effort and resources, and many of them could be replicated in other regions. Native American Cancer Conference Ill: Risk Factors, Outreach and Intervention Strategies, Seattle, Washington, June 16-19,1995 The NCI awarded the UWCCC a $4999 supplement to its Cancer Center Support Grant in June 1995 to participate in the Native American Cancer Conference Ill and to ascertain the type and extent of follow-up activities initiated by the UWCCC as a result of conference participation. The UWCCC sponsored travel for three participants, including two representatives from the GLITC. One of the attendees, James Pete, also participated as a panelist in the workshop, “Cancer Information and Counseling Services.” An educational seminar and statewide conference were held as follow-up strategies to address cancer concerns among Wisconsin Native Americans. Dr. James Hampton, a Native American researcher and oncologist from the IJniversity of Oklahoma and a key organizer of the Native American Cancer Conference 111, presented a special seminar entitled, “Strategic Plan for Cancer Prevention & Control For Native Americans,” to approximately 50 UWCCC faculty and staff on August 28, 1995. Dr. Hampton also met with UWCCC cancer control researchers and outreach staff to share information and discuss intervention strategies to reach Native American populations. 1635 Wisconsin Native American Conference on Cancer Control and Data Collection, Wausau, Wisconsin, August 29-30,1995 The GLITC, UWCCC, and WDOH cosponsored a 2day conference in August 1995 that focused on cancer control concerns and cancer data issues among Wisconsin Native Americans. The conference was attended by nearly 100 tribal health directors, Native American elders, community health representatives, and others concerned about Native American health issues. The program began with a prayer and opening ceremonies, followed by a keynote address by Dr. James Hampton and a presentation on Native American cancer data by Dr. John Dellinger, Medical College of Wisconsin. Small groups discussed data needs, how to collect data, and who should be responsible. Findings were compiled in “Trends in Wisconsin Indian Health.” The second day focused on collaborative interagency cancer activities and cancer survivorship. A UWCCC speaker described collaborative outreach activities undertaken with the GLITC and highlighted UWCCC programs and services available to the Native American community, such as the CIS. The survivorship session included a panel discussion by three Native American elders who described their experiences with cancer. Small groups discussed cancer information, treatment, and support needs. Key concerns fell into three general areas: support systems and services, coordinated resources, and culturally competent information. Findings from the survivor session will be published and shared with health care providers, tribal leaders, elders, and others. Cancer in Tribal Communities Work Group The Cancer in Tribal Communities Work Group was formed by the GLITC as a result of a 1995 Cancer Development Initiative that identified cancer as a priority and supported Native American cancer data initiatives. Organizational representatives currently include the GLITC, UWCCC, CIS, WDOH, and the American Cancer Society, Wisconsin Division. Plans are underway to expand the membership to additional groups during the next year. Initiatives undertaken by the Cancer Work Group include identifying and assessing cancer incidence and mortality data for Native Americans, identifying and developing culturally relevant materials, assessing services, and identifying resources. New projects are planned that will address needs identified at the Wisconsin Native American Conference on Cancer Control. UWCCC outreach staff actively participate in the bimonthly meetings. Wisconsin Indian Elders Association In October 1995, members of the Cancer Work Group were asked to speak at the annual meeting of the Wis- 1636 CANCER Supplement October 1, 1996 / Volume 78 / Number 7 consin Indian Elders Association. The UWCCC participated in a panel that discussed opportunities for collaborative cancer outreach projects, Wisconsin Native American cancer data, cancer survivorship issues, and findings from the August 1995 Wisconsin Native American Conference on Cancer Control. The International MultiCultural Partnership and the Wisconsin MultiCultural Task Force The International MultiCultural Partnership (IMP), housed at the UWCCC, and the Wisconsin MultiCultural Task Force work collaboratively with Wisconsin tribes. Both organizations are consortia of public health advocates and community members who are concerned with the development and implementation of culturally competent health education programs and services regarding tobacco and cancer prevention and control. The IMP is developing national multicultural networks, including the Native American Network, which will provide technical assistance and training to improve the delivery of culturally competent services related to tobacco and cancer control. The IMP is working together with the GLITC and tribal health clinic directors to establish the Wisconsin Native American Network on Tobacco and Cancer. The UWCCC is a strong partner in these efforts, conimitting staff and resources to the endeavor. Indian Health Planning Work Group The Indian Health Planning Work Group was established in 1990 as a monthly forum for University of Wisconsin faculty and staff to share information, explore collaborative projects, learn about Native American health issues, and promote training for health professionals who work with Native American people. Through this forum, UWCCC and CIS outreach staff have developed a breast cancer prevention program targeting tribal health centers and facilitated the participation of tribal health clinics in Breast Cancer Awareness Month and National Mammography Day. Cancer Control Materials and Programs The UWCCC and the CIS work together to produce and disseminate culturally competent educational materials to the Native American community. Plans are underway to adapt the UWCCC fact sheet series, Spread the Word, for Native Americans. The Region 11 CIS has collaborated with tribal women to adapt culturally competent NCI-produced materials concerned with mammography, Pap tests, and pelvic examinations. The CIS fact sheets are being used in tribal health clinics throughout the region to increase cancer awareness. Both organizations serve as clearinghouses to disseminate materials to tribal communities. In 1995, the UWCCC, the Wisconsin Cancer Pain Initiative, and the University of Wisconsin Hospital and Clinics Department of Outreach Education produced two half-hour videotapes: Is Cancer Pain Inevitable? and Communicating About Cancer Pain. Target audiences included cancer patients, their families, and health professionals. The goal was to increase awareness about cancer pain management and to improve communications about cancer pain. The sponsors were committed to producing a culturally Competent product that could be used with Native American patients. A local and respected Native American elder from the Menominee Tribe participated in the videotapes, sharing his cancer pain management experience. The response to the programs from the Native American community has been positive. During 1995, the UWCCC also collaborated with GLITC on several cancer control grant proposals, explored World Wide Web applications for Native American cancer education materials, and explored telemedicine opportunities with several Wisconsin tribes. Plans are underway to collaborate with CIS Region 11 to sponsor Native American cancer forums among the 11 tribes to give community members and tribal directors the opportunity to talk about cancer and their cancer-related needs. CONCLUSIONS The UWCCC is committed to working in partnership with the Wisconsin Native American community to identify cancer concerns and find ways to address emerging needs. The challenge has been to organize an outreach program that the Native American population would find culturally competent and feasible based on the resources of the UWCCC. We had to face certain truths-that there are indeed conflicts between the totality of what a given population may need and the realities of cancer center funding and human respurces. The desire and commitment to gain legitimate community support, while at the same time fulfilling cancer center requirements and timelines, has been a challenge that has helped to facilitate a paradigm shift. This honors the totality rather than saying one group’s needs are more valued than another. A commitment of this kind is not easy or comfortable for some organizations who have not operated this way in the past.” Addressing health problems effectively in underserved communities requires taking time to establish the rules for working collaboratively and allotting the time needed for community mobilization to take place. Building trust with tribal leaders and community members has grown out of consistent words and Cancer Center and Tribal PartnershipdLaMarca et al. actions on the part of UWCCC leadership and staff. Thoughtful exploration of issues and concerns was encouraged to build healthy and productive relationships capable of success over the long term. Sharing power, as opposed to pushing agendas, was valued and worked for as partners continued to strive to achieve true collaboration and build the capacity and resources needed to make an impact. Furthermore, we learned that for significant and meaningful community participation to occur, we needed to go into the community and talk to the people who live there.” By listening to their concerns, interests, needs, and fears through focus groups, informational public meetings, or at Native American local gatherings, we were able to coordinate and build together for the betterment of the whole. REFERENCES 1. 2. Ries LAG, Miller BA, Handey BF, Kosary CL, Harras A, Edwards BK. editors. SEER cancer statistics review, 1973- 1991. NIH publication no. 94-2789. Bethesda, MD: U.S. Department of Health and Human Services, Public Health Service, National Institutes of Health, 1994. Pickle LW, Mason TJ, Neil H, Hoover R, Fraumeni J. Atlas of U.S. cancer mortality among nonwhites: 1950-1980. NIH publication no. 90-1582. Bethesda (MD): U.S. Department of 1637 Health and Human Services, Public Health Service, National Institutes of Health, 1990. 3. Baquet CR, Horm JW, Gibbs T, Greenwald P. Socioeconomic factors and cancer incidence among blacks and whites. I Nut1 Cancer Oist 1991;83:551-7. 4. American Cancer Society. Cancer facts and figures for minority Americans- 1991. Pub. 91-75M-No. 5623. Atlanta, GA: American Cancer Society, 1991. 5. Minority health in Wisconsin: toward a healthy diversity. Wisconsin Department of Health and Social Services, Division of Health, Center for Health Statistics, 1993. 6. Dellinger JA, Malek LL. Trends in Wisconsin Indian Health. Lac du Flambeau, WI: Great Lakes Inter-Tribal Council, 1995:October. 7. Burhansstipanov L, Dresser C. Documentation of the cancer research needs of American Indians and Alaska Natives. NIH publication no. 94-3603. Bethesda, MD: U.S. Department of Health and Human Services, Public Health Service, National Institutes of Health, 1994. 8. Steuart GW. Scientist and professional: the relations between research and action. Health Educ Q 1993;(suppl 1):585-92. 9. Lonner W, Berry J, eds. Field methods in cross-cultural research. Newbury Park: Sage publications, 1986. 10. Eng E, Young R. Lay health advisors as community change agents. J Fam Community Health 1992;15:24-40. 11. Wallershein N, Berustein E. Empowerment education: Freire’s ideas adapted to health education. Health Educ Q 1988; 15~379-94. 12. Watt A, Rodmell S. Community involvement in health promotion: progress or panacea? Health Promotion 1988;2:359-68.