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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.
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