Cancer is a new concern for most native communities. Data from the Indian Health Service (IHS) and National Cancer Institute (NCI) Surveillance, Epidemiology, and End Results (SEER) program have documented the dramatic increase in cancers that once were quite rare in this population.1–4
American Indians and Alaska Natives (AI/ANs) suffer from inordinate morbidity and mortality from various cancers. The Spirit of Eagles is a national Special Populations Network that has developed the community infrastructure to support culturally appropriate, long-range, comprehensive cancer control activities. Subcontracts were developed that involved major cancer centers, nonprofit organizations, policy boards, professional societies, and educators. Community-based cancer control grants were distributed through the Spirit of Eagles program. Community-based participatory research involved 38 communities in a broad range of cancer control activities. The key to long-range improvement in cancer morbidity and mortality in AI/AN communities lies in building infrastructure to support strong partnerships enabling community-based participatory research. Cancer 2006. © 2006 American Cancer Society.
Status of Cancer Control Activities in American Indian and Alaska Native Communities Before 2000
Implementation in 2000 of the Special Populations Network (SPN), the American Indian/Alaska Native (AI/AN) Leadership Initiative on Cancer, which came to be known as the Spirit of Eagles (SoE), marked the first time that a coordinated effort had been made in AI/AN communities to address cancer. Before the establishment of the Spirit of Eagles SPN, no tribes had comprehensive cancer control plans and no patient navigators were available on reservations. No community grants were geared specifically to Native Americans/Alaska Natives, and there were no Native American Research Centers for Health nor regional conferences on cancer for tribes. Few culturally specific cancer educational materials existed for American Indian or Alaska Native populations.
Before responding to the Request for Applications for Special Populations Networks (RFA CA99-003), a group of committed specialists, community leaders, and survivors had worked together informally. These efforts were formalized and coordinated during the period 1990–2000.
Network for cancer control research in American Indians and Alaska native populations
In 1990, the NCI Special Populations Branch of the Division of Cancer Prevention and Control (DCPC) sponsored the development of the Network for Cancer Control Research Among American Indian and Alaska Native Populations (NCCR-AIANP, aka “the Network”). The stated mission of the Network was “to reduce preventable cancer morbidity and mortality to the lowest possible levels and to improve cancer survival to the highest possible level.”5, 6
Recognizing that national efforts to reduce the cancer burden among American Indians and Alaska Natives had been fragmented, the Network also assessed the types of cancer-related activities in progress among American Indians and Alaska Natives.7–9
It was concluded that while Federal and state agencies, foundations, and special interest groups had taken diverse roles to reduce cancer incidence and mortality among AI/ANs, collaborative efforts among these various agencies/organizations/programs had been infrequent. No “blanket effort” had been undertaken to develop an infrastructure for AI/AN cancer control. The Network agreed to become the scientific advisory board for the SoE grant.
In 2000, the Native WEB (Women Enjoying the Benefit of Screening), an established breast and cervical cancer outreach training program for nurses working in AI/AN communities, became a partner with SoE. Papanicoulaou (Pap) smears for detection of premalignant or early cervical malignancy and mammography for early detection of breast cancer have traditionally been underutilized by American Indian and Alaska Native women,10 and it was hoped that the work of Native WEB would increase screening rates among AI/AN women.
Culturally appropriate cancer educational materials are essential tools for community outreach. The American Indian/Alaska Native Cancer Information Resource Center and Learning Exchange (Native C.I.R.C.L.E, grant number R25077410-06a)––established in 1999 within the Mayo Clinic Comprehensive Cancer Center––provides, stimulates, develops, maintains, and disseminates culturally appropriate cancer information materials for AI/AN educators, providers, and students. Videos and print materials sent to Native C.I.R.C.L.E. from around Indian Country are reviewed by the medical director for medical accuracy, modified if necessary, and made available for distribution to health care and community settings. Other collaborators, such as the National Indian Women's Health Resource Center, review materials for appropriateness in different educational settings. C.I.R.C.L.E. is the educational arm of the Spirit of Eagles.
The combination of these programs for Native Americans––outreach provided through WEB, awareness and education coordinated through C.I.R.C.L.E., and infrastructure building accomplished by SoE––has produced a sustainable, multifaceted, long-term cancer control program for AI/ANs.
MATERIALS AND METHODS
SoE developed subcontracts that involved major cancer centers, nonprofit organizations, policy boards, professional societies, and educators. Community-based cancer control grants have been distributed to Native communities through SoE, and competitive pilot research grants have also been funded by the NCI Center to Reduce Cancer Health Disparities.
Objectives and Purpose of the Spirit of Eagles Program
The SoE program has provided the necessary infrastructure for local, regional, and national cancer education and control activities. Multisite collaboration among major medical centers across the United States has assisted tribes in: 1) increasing community awareness and understanding about cancer; 2) providing training in cancer control research for AI/AN researchers; and 3) improving Native community channels to NCI, so that research can be specifically focused on issues that affect Native peoples.
The program's strong partnership approach has addressed the 3 major needs for education, training, and clinical trials development. Figure 1 illustrates the major partnerships developed by SoE. Some of these organizations have multiple functions within the program (e.g., the Association of American Indian Physicians, the Cancer Information Service (CIS), and the Native WEB).
Partners were chosen for the commitment, resources, and skills they could bring to the table, and subcontracts were developed with specific scope-of-work agreements to achieve mutually agreed-upon goals. Other partnerships were less formal, but were effective in conducting specific cosponsored activities (e.g., the Shakopee-Mdewakaton Regional Cancer Conference).
Native researchers cancer control training program
Through subcontracts with the University of Arizona Native Researchers Training Program and the Oregon Health Sciences University, SoE collaborators developed focused cancer control research training. Specific goals of these collaborations included: 1) providing training to 10 AI/ANs per year for 3 years; 2) providing technical support and long-term monitoring to trainees; 3) creating additional training experiences, including advanced seminars in cancer epidemiology, cancer control strategies, and use of new statistical software; 4) holding a forum to foster collaborative studies among graduate trainees; and 5) hosting representatives from NCI, the Centers for Disease Control and Prevention (CDC), the American Cancer Society (ACS), and other agencies to share information on training opportunities, fellowships, and grant RFAs.
Cancer Information Service
The SoE program developed subcontracts with the North Central and Pacific Northwest CIS regional offices. The Region 11 (North Central) CIS based at the University of Wisconsin Comprehensive Cancer Center serves the states of Iowa, Minnesota, North Dakota, South Dakota, and Wisconsin. The Region 15 (Pacific Northwest) CIS serves Washington, Oregon, Idaho, Nevada, and Alaska. The scope of work for these subcontracts was drafted jointly to encompass activities strategic to the specific aims of increasing community understanding, providing training in cancer control research, and facilitating collaboration and communication between Native American communities and the NCI. Major goals accomplished through these subcontracts include: 1) the joint review of cancer information materials for cultural relevance; 2) technical assistance provided to tribes; 3) identification of partnership opportunities; and 4) the provision of outreach workers to coordinate community events.
National Indian Health Board
The National Indian Health Board (NIHB), established in 1972, is a nonprofit organization that conducts research, policy analysis, program assessment and development, national and regional meeting planning, and training and technical assistance programs on behalf of all tribes, area health boards, tribal organizations, Federal agencies, and private health foundations. The goals of the NIHB partnership included: 1) maintaining an active representative of NIHB as a voting member on the Network; 2) coordinating with SoE to provide workshops on current cancer topics such as clinical trials at the NIHB Annual Consumer Conference; 3) providing coverage of SoE activities in the organization's newsletter; and 4) publicizing and distributing the community grants RFA to all NIHB members.
Native American Cancer Initiatives
Native American cancer initiatives (NACI) is a Native-owned corporation whose mission is to implement culturally competent Native American education, service, and research initiatives designed to reduce cancer incidence and mortality and improve quality of life after a cancer diagnosis. Its subcontract with SoE provided specific educational outreach programs, particularly clinical trials education for Native Americans (presented at AAIP and NIHB, for example).
Association of American Indian Physicians
Association of American Indian Physicians (AAIP) is a national nonprofit, educational, scientific, and charitable corporation located in Oklahoma City, Oklahoma. AAIP pursues excellence in Native American health care by promoting education in the medical disciplines while honoring traditional healing practices. The AAIP annual meeting brings together the largest group of practicing Native American physicians and medical students in the country. Goals of the SoE subcontract with AAIP were to: 1) identify students worthy of travel scholarships from SoE to the annual meeting; 2) utilize time at the annual meeting for cancer-related workshops (e.g., Clinical Trials Education for Native Americans) conducted by SoE members; and 3) provide a forum for collecting data from practicing Native American physicians on their interest in and understanding of cancer prevention and control.
University of Kentucky
The University of Kentucky subcontracted with SoE to: 1) catalog all publications arising from grant activities; 2) evaluate the community projects funded through the SoE RFA; 3) analyze the productivity of the major subcontractors; and 4) record other dollars resulting from SoE activities (other grants, sponsorship from tribes, etc.).
SoE Tribal Community-Funded Projects
A basic tenet of SoE has been to provide resources directly to communities. This concept guided SoE to develop an extensive program of community-based education and research projects. RFAs were developed by the SoE Steering Committee and publicized widely throughout Indian Country, resulting in seed grants to communities for innovative cancer control projects. Network members reviewed and scored the applications using agreed-upon criteria. All grantee communities agreed to have the results of their project shared with other Native communities and in publications with SoE.
Table 1 enumerates SoE activities and results accomplished during the 5-year grant period. Because of the strength and breadth of its partnerships, SoE has been able to conduct extensive cancer awareness activities, train over 150 students and scientists, conduct 9 research pilot projects, and mentor 38 cancer control community-based projects across the country. Major results include the development of these ongoing partnerships, success of the community grants program, launching of “Cancer 101,” development of extensive Alaskan initiatives, and collaboration with the Native American Research Centers for Health (NARCH) program.
|Activity type||No. of activities||Description|
|Cancer awareness activities||Over 300 activities + over 40,000 cancer materials distributed||Assisted with multiple cancer control and cancer awareness activities and programs, clinician training, and cancer control project design.|
|Prepared, published, and disseminated articles in newsletters and through news media about newly trained Native researchers.|
|Pilot projects||9||Encouraged Native American research collaboration between communities and Comprehensive Cancer Center (CCC) programs to apply for pilot projects. Collaborations included Fred Hutchinson CCC, Mayo Clinic CCC, and The University of Wisconsin.|
|Scientist training||Over 150||Provided research-related training to 30 AI/AN trainees over the grant period, including focusing training on cancer control research (includes summer institute trainees).|
|Conducted training or presentations at professional and community conferences.|
|Mentored 80 new or re-entering scientists, and prepared them for professional conferences/meetings.|
|Papers||Over 90||Published papers/in peer reviewed journals (45) special reports (10), abstracts (25), posters (10)|
|Partnership projects funded||Over 40||Since 1999, funding agencies providing additional funds to SoE and its partners have included Department of Defense, National Human Genome Research Institute, National Cancer Institute, Centers for Disease Control and Prevention, Colorado Department of Public Health and Environment, Susan G. Komen Foundation, Lance Armstrong Foundation, Indian Health Service, Office of Minority Health, National Institutes of Health Office of Research on Women's Health, National Indian Women's Health Resource Center, Battelle Corporation, and the American Cancer Society.|
|Promoting sustainability||Over 20 activities||Developed effective partnerships to support collaborative activities to promote and sustain cancer control activities within tribal communities and organizations.|
|Provided direct technical assistance and resources that are culturally relevant and meaningful to tribal communities/organizations (e.g., grant-writing workshops, cancer education curriculum development).|
|Participated in Comprehensive Cancer Control Planning (CCCP) activities with tribal organizations|
|Conducted Partnership Training Institutes intended to serve both tribes and organizations that serve tribes.|
SoE Tribal Community-Funded Projects
Grantees were highly diverse, including very large reservation communities, small tribal villages, urban and rural communities, and communities stretching from the Sonoran deserts of the Southwest to the Arctic circle of Alaska. Grantees included both those with prior grant experience, such as with the CDC breast and cervical cancer screening program, and those that had never had a grant or done any work on cancer. The SoE established a trust relationship with tribes to support them in identifying problems related to cancer and offering solutions at the local level. Over the 5 years of the project, cancer issues addressed expanded from breast and cervical cancers to men's cancers and issues of tobacco use among youth.
More than 100 applications were reviewed and a total of 38 community projects in 17 states were funded (Fig. 2). Overall, 25% of SoE grant dollars have been distributed directly to communities under contract. All community grant applicants have been offered working relationships with their local CIS partnership offices and many have had direct support from state or national ACS programs. In addition, Native WEB and Native C.I.R.C.L.E. resources have been made available to all who have applied.
The importance of these initial community-funded projects is illustrated by the Ho-Chunk Nation cancer initiatives. In 2000 the Ho-Chunk Nation received a Spirit of Eagles grant in the first round of these competitive community-based cancer programming stimulus grants. Ho-Chunk's community grant stimulated new, innovative programming by focusing on cancer prevention and screening among male tribal members. During this time period, the North Central CIS program director served as an advisor for the Ho-Chunk Nation cancer program. The tribe's success provided a foundation for 3 subsequent successful cancer control grants from various sources. This period saw greater involvement by tribal cancer survivors in the Ho-Chunk Nation's cancer screening promotion, the development of a tribal cancer registry, and tribal participation in the Great Lakes Native American Research Centers for Health pilot study, “Improving American Indian Cancer Surveillance and Data Reporting in Wisconsin.” In April 2004, the Ho-Chunk Nation's cancer initiative achieved a new level of success with the sponsorship of a regional American Indian cancer conference. The tribe now intends to make this an annual event, thereby sustaining a regional awareness of cancer.
Another example of a highly successful program was developed with a small Pacific Northwest tribe that sought to address cancer prevention on a family level. By offering a family program, the men of the tribe became actively involved and ultimately were able to share their cancer stories in a traditional way with shared food, laughter, crafts, and a give-away. The men's involvement with SoE empowered the community to plan and implement successful screening programs. That model has been shared with other tribes in the region and has led to stronger partnerships with the University of Washington and the Pacific Northwest CIS located at the Fred Hutchinson Comprehensive Cancer Center. Ultimately, the tribe has successfully competed for a CDC comprehensive cancer control planning grant.
SoE's partnership with the National Indian Health Board has helped it reach tribes across the country, large and small, and has been critical to the success of the community grants program.
“Cancer 101: An Education and Training Program for American Indians and Alaska Natives” has been a team effort to reduce the cancer burden in tribal communities through awareness and education. The purpose of the “Cancer 101” curriculum is to provide basic information about cancer to community members, staff of Indian health programs, and Community Health Representatives. The 7-module education curriculum was written by the SoE outreach coordinator at the Pacific Northwest CIS office in consultation with member tribes of the Northwest Portland Area Indian Health Board (NWPAIHB). The “Cancer 101” curriculum has been utilized in trainings in 57 locations thus far. In addition, the curriculum has been modified for other ethnic groups and has been adopted by the CIS nationally. Communities that wish to use the curriculum contact the CIS at 1-800-4-CANCER and ask for the appropriate regional partnership program. This is a prime example of SoE's effort to provide culturally competent cancer information to the AI/AN community.
Student Outreach and Mentoring
Each year approximately 16,500 students enter the first-year class of the 126 allopathic medical schools in the United States. Of that number, only 100 to 200 are of American Indian/Alaska Native heritage. SoE has been highly successful in maximally utilizing funds by aligning with existing educational programs that promote research and support systems for AI/AN students.
The outreach and mentoring initiative has provided more than 150 travel scholarships for students to attend or present at annual national conferences. SoE has developed and modified curricula to arm future scientists with the latest techniques and skills necessary to be competitive grant writers and competent researchers. One example is a student identified and mentored by SoE who completed a postdoctoral fellowship in cancer control at the Fred Hutchinson Comprehensive Cancer Center, has received K12 funding, and is actively pursuing a career as an independent researcher. Another Alaska Native student assisted by SoE completed his MD/PhD and has conducted bench work that involves novel approaches to cervical cancer vaccines––a topic of significant importance to Native populations.
SoE has been involved in forming a network of Northeast colleges to attract bright AI/AN students. A consortium of Northeastern academic institutions including Harvard, New York University, Boston College and Roswell Park Cancer Institute are collaborating with SoE to enhance recruitment of AI/AN premedical, medical and graduate students to this region. The program identified MCAT testing as a barrier for students interested in attending medical school and, as a result, MCAT power workshops have been developed and were conducted on campus at New York University. The Association of American Indian Physicians cosponsored those workshops. SoE has also piloted student-focused cancer topic breakout sessions/workshops at regional and national meetings. With only two (2) Native American medical oncologists in the United States, AI/AN students have limited role models in oncology. SoE has provided concentrated time for students to interact with these oncologists.
Finally, the unique Hampton Scholars Program provides scholarships on a competitive basis to medical school, graduate, and undergraduate students who have an interest in cancer research. Approximately half of the 25 selected Hampton Scholars were undergraduate and half in medical school or graduate school. These funds removed financial obstacles to career advancement, especially for Native students who have families and find it difficult to balance school and family responsibilities.
Alaska has seen marked increases in cancer in general, as well as in specific malignancies such as breast cancer. Data from SEER have been instrumental in identifying specific cancer control needs. Several tobacco control pilot projects were funded by SoE in Alaska because that issue was identified by communities as most important. These projects ranged from analyzing pregnancy outcomes of Alaska Native smokeless tobacco users to needs assessments of Native teen tobacco users. All of this work was done in a true community participatory action model, with the community deciding which issues needed to be addressed, reviewing the data, and participating in publishing results. Because not all resources could be provided through SoE, other partnerships were established with CDC and NCI to carry out these projects.
Native American Research Centers for Health is a joint initiative by NIH and the Indian Health Service, and SoE members were involved in the original meeting (August 2001 in Bethesda, MD) that resulted in this unique program. SoE has worked with funded NARCH grantees to support student activities, community-based cancer research, and palliative care data collection. For example, the Capacity Project results reported to Wisconsin tribes led to the endorsement by the Tribal Health Directors Association of a 3-year pilot study with SoE to develop cancer profiles with all tribal and urban clinics in Wisconsin. “Improving American Indian Cancer Surveillance and Data Reporting in Wisconsin” is currently being conducted with 11 of the 13 tribal and urban clinics in Wisconsin.11 The prior SoE-supported study, “Cancer Mortality Among Wisconsin American Indians, 1996–2000,” had revealed significantly higher rates of colorectal, lung, and cervical cancers than had been recorded by the state. A major policy change has resulted from the SoE/NARCH collaborative project. At the time of the Capacity Building Project, no tribal or urban Indian clinic was reporting cancer cases directly to the state registry. As an outgrowth of this work, SoE has assisted the registry and tribal/urban clinic administrators to develop and implement a protocol for direct voluntary cancer case reporting by these clinics.
The Spirit of Eagles program has demonstrated that the community-based participatory research model is changing the way cancer is perceived and treated among AI/AN populations. Many AI/AN communities have gained substantially by collaborating with SoE through enhanced efforts in education/awareness, infrastructure building, outreach, support networks, training, and tribal cancer planning. Cosponsorship of the NIHB annual Consumer Conference has provided direct contact with local tribal leaders. This infrastructure development with tribal leaders will empower SoE to work with tribes to analyze policy and its effect on cancer prevention, screening, and treatment during its next phase of activities.
The SoE cancer mini-grants to community groups represent a novel source of funds to initiate programs. Ideally, the community partnerships that have developed from these mini-grants will lead to additional applications to nonprofit cancer organizations such as the ACS, the Lance Armstrong Foundation, and the Susan G. Komen Foundation. In addition, the challenge of managing these funded projects has often resulted in bringing new talent from the community into leadership positions.
As described by Moore,12 value for the public is created when governmental agencies use authority and funds to develop and support programs that benefit the community. The NCI's Special Populations Networks have clearly embodied that principle. Foremost among the examples of such contributions is the expansion of a network of investigators committed to reducing cancer health disparities. Significantly, SoE has provided investigators, tribes, and communities with the opportunity to compete for additional funds to support cancer-related activities. Examples include: 1) CDC funding to tribes for comprehensive cancer prevention and control planning; and 2) Lance Armstrong Foundation funding for research with and support for cancer survivors in AI/AN communities.
SoE has accelerated the development of a network of investigators who are engaged in cancer control research with AI/AN populations and facilitated a rapid expansion of capacity for American Indian/Alaska Native researchers to participate and assume leadership in this important area.
Due in large part to the work of SoE, cancer is now a major agenda item for tribes, tribal leaders, and students considering career choices. Gone forever is the time when the word “cancer” could not be spoken in Native communities. In addition, many organizations that are dedicated to working on cancer issues (e.g., CIS, ACS) have learned about the cultural aspects of working collaboratively with American Indian and Alaska Native communities. Partnerships have been sustained and new ones developed to bring much needed resources to Native communities.
The community grants program has provided the opportunity for AI/AN populations to conduct community-based cancer research that is reflective of the unique and specific goals defined by each community, and thus has been culturally responsive to community needs. In implementing this approach, the community grants component has embodied the fundamental principles of self-determination and respect of tribal sovereignty in Native communities. This has been a primary strength of the program and ultimately has contributed to its enormous success.
It is important to recognize that this is a long-term effort and a building process. Through the SoE grant, sustainable infrastructure now exists that can continue to support cancer prevention and control efforts. The most effective community grantees were those who participated in skill-building through SoE-sponsored activities and have stable local leadership. There is a need to continue helping tribes develop the skills needed to conduct comprehensive cancer control programs.
The most difficult situations SoE has encountered are those in which staff turnover at the community level has caused a cancer project to either be shelved or cut back drastically due to competing needs. However, many lessons have been learned from those programs that have struggled to successfully complete their activities. Challenges have been related to miscommunication or lack of communication, isolation, high staff turnover, lack of training, or inability to engage the community in the proposed activities. SoE has learned how best to support struggling programs through regular communication, site visits, referral for needed resources, and additional mentoring.
In many areas, tribal communities have been transformed by engaging in partnerships that have increased their capacity and confidence to move forward with comprehensive efforts to address cancer within their communities. Six tribes affiliated with SoE activities already have successfully competed for CDC Comprehensive Cancer Control grants. We have no doubt that more will do so in the future!
Over the 5-year course of this project, SoE has seen a significant increase in Native American students seeking medical careers. However, it is still difficult to find students who are willing and able to commit to the 8 years of training beyond medical school that are required to subspecialize. Nonetheless, even those students who become primary care physicians will have a more positive attitude toward cancer in AI/AN communities because of the impact of SoE.
The SoE program has demonstrated that major cancer centers can be guided to conduct culturally appropriate community outreach that is truly participatory. Such an approach is the best way to improve the overall experience of Native Americans who face the challenge of cancer. The keys to success include: 1) identifying leaders on the national, regional, and local levels; 2) providing skill-building opportunities such as grant-writing workshops, conferences, and cancer education workshops (e.g., “Cancer 101”); 3) flexibility (not having a preconceived notion of what will work); 4) bringing together stakeholders, including survivors; 5) combining resources with other funding organizations such as ACS, CDC, and NIH; and 6) remembering to communicate, communicate, communicate.
The key to long-range improvement in cancer morbidity and mortality in American Indian/Alaska Native communities lies in building infrastructure to support strong partnerships that enable culturally appropriate, community-based participatory research. The Spirit of Eagles SPN has demonstrated the value of this approach and provides a model, both in terms of the initiative as a whole as well as its specific programmatic activities, with potential applicability to other racial/ethnic and cultural populations.
The Spirit of Eagles program would like to acknowledge Vicki Shea for her work in the preparation of this article.