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CDC 2016 Cancer Summit REPORTS - Looking Back and Looking Ahead: Collaborating to Advance Cancer Control in American Indian and Alaska Native Communities

Foreword

Summit Objectives

Day 1 Proceedings: Current State of Cancer Control in Indian Country
Day 2 Proceedings: Embracing Policy, Systems and Environmental Approaches to Address Cancer Disparities Among American Indian and Alaska Native Communities
Day 3 Proceedings: Finalizing Action Steps and Call to Action 

Summit Evaluation

Download the Report in PFT

 

 


 

The CDC 2016 Cancer Summit titled “Looking Back and Looking Ahead: The State of Cancer Control in American Indian and Alaska Native Communities,” convened current and former DCPC tribal grantees from five CDC regions, CDC staff and Comprehensive Cancer Control National Partnership members from April 26 to 28, 2016 at the Grand Traverse Resort in Traverse City, Michigan. This summit followed the September 2005 summit in Tucson, Arizona and the June 2009 summit in Denver, Colorado.​

Keynote speakers and panelists provided information and insight at the beginning to set the tone for succeeding discussions among DCPC Tribal grantees by CDC regions. These discussions culminated in the creation of action plans to improve outcomes in cancer control for American Indian and Alaska Native communities over the next ten years.

This report, developed by George Washington University (GW) Cancer Center, summarizes summit proceedings, presentation highlights and key decisions made by attendees, as well as evaluation results completed and generated by attendees.

To view the photo gallery, media release and speaker presentations, visit National Native Network.

 

 

 

 

Across the lifespan, American Indians and Alaska Natives have higher rates of disease, injury and premature death than other racial and ethnic groups in the United States. However, many chronic diseases, including cancer, can be prevented or mitigated by culturally relevant, community-driven policies, systems, and environmental improvements that support healthy choices and behaviors.

In an effort to address these issues, the Centers for Disease Control and Prevention (CDC) works with American Indian and Alaska Native tribes, tribal organizations and tribal epidemiology centers to promote health, prevent disease, reduce health disparities and strengthen connections to culture and behavior that improve health and wellness. CDC’s National Center for Chronic Disease Prevention and Health Promotion has a significant investment in health and wellness in Indian Country. These investments, in FY 2015, included more than $30 million awarded to tribes and tribal organizations through chronic disease prevention programs including Good Health and Wellness in Indian Country; Partnerships to Improve Community and Health (PICH); Racial and Ethnic Approaches to Community Health (REACH); National Networks – Impact Populations Experiencing Tobacco-Related and Cancer Health Disparities; the National Breast and Cervical Cancer Early Detection Program (NBCCEDP); the National Comprehensive Cancer Control Program (NCCCP), the Colorectal Cancer Control Program (CRCCP); and the Well Integrated Screening and Evaluation for Women Across the Nation (WiseWoman). More specifically, CDC invested nearly $10 million in awards to grantees to prevent and control cancer. 

Through the NBCCEDP, CDC provides low-income, uninsured and underserved women access to timely breast and cervical cancer screening and diagnostic services, and referral to treatment programs in all 50 states, the District of Columbia, 5 U.S. territories and 11 American Indian/Alaska Native tribes or tribal organizations to provide screening services for breast and cervical cancer.

The NCCCP helps all 50 states, the District of Columbia, 7 tribes and tribal organizations and 7 U.S. Associated Pacific Islands/Territories to plan and prioritize strategic activities to prevent and control cancer. NCCCP grantees use an integrated and coordinated coalition-based approach to implement activities to reduce the burden of cancer in their communities by maintaining and supporting strong, statewide (or jurisdiction-wide) coalitions of cancer prevention and control stakeholders; and implementing statewide (or jurisdiction-wide) cancer control plans that emphasize the primary prevention of cancer; support people who have been diagnosed with cancer through treatment and beyond; and increase access to quality health care for all people, including those in communities with a higher burden of cancer.

The purpose of CDC’s CRCCP, established in 2009, is to increase colorectal cancer screening rates among people between 50 and 75 years of age by implementing evidence-based interventions and other supporting strategies in partnership with health systems and providing colorectal cancer screening and follow-up services for a limited number of eligible people.

This report summarizes the outcomes and proceedings from the CDC-sponsored 2016 cancer summit, “Looking Back and Looking Ahead: The State of Cancer Control in American Indian and Alaska Native Communities.” This summit was convened at the request of CDC’s current tribal grantees; it provided a forum for open dialogue about topics of interest as well as an opportunity to work together in teams to collaboratively identify priority areas and strategies for cancer prevention and control in Indian Country over the next decade.

Sincere appreciation is extended to meeting co-sponsors including the American College of Surgeons Commission on Cancer; California Rural Indian Health Board, The George Washington University Cancer Center, National Cancer Institute and the National Native Network. In addition, sincere appreciation is extended to the members of the summit planning committee. Special acknowledgment is extended to Ms. Annie Brayboy, whose incredible leadership and commitment to the tribal community has been invaluable.

We hope the American Indian and Alaska Native Cancer Summit report encourages and inspires readers in planning and implementing cancer prevention and control activities in Indian Country.

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The Current State of Cancer Control in Indian Country

 

 

Day one of the Centers for Disease Control and Prevention’s (CDC) 2016 American Indian/ Alaska Native Cancer Summit opened with remarks from the Director of the CDC Division of Cancer Prevention and Control (DCPC), Lisa Richardson, MD, MPH. Dr. Richardson officially welcomed participants and thanked the summit planning committee and sponsors. Then, Ruth Bussey, Grand Traverse Band Health Director, led the opening prayer for the event. Joshua Hudson of the National Native Network (NNN), Margaret Farrell of the National Cancer Institute (NCI) and Nina Miller of the American College of Surgeons (ACOS) welcomed everyone; and Ena Wanliss and Annie Brayboy provided an overview of the summit.

David Espey, MD of CDC was the day’s keynote speaker. Dr. Espey’s presentation on “Cancer Surveillance in American Indian and Alaska Natives: What the Data are Telling Us and Future Directions,” focused on emerging trends in American Indian and Alaska Native cancer data sets. Dr. Espey highlighted regional differences in cancer incidence and demonstrated that making comparisons of cancer rates between American Indian and Alaska Native regions is critical to understanding the cancer patterns for improved program planning and resource allocation. For example, cancer rates in the Plains region and Alaska are much higher than rates in American Indian and Alaska Native populations in the East and Southwest regions (White et al., 2014).​

Dr. Espey also suggested possible future directions for cancer control in American Indian and Alaska Native populations. First, there is a need and opportunity for the cancer control community to focus on liver cancer prevention in American Indian and Alaska Native populations. In contrast to the ranking of liver cancer as the 8th and 10th leading cause of death in  the U.S. among non-Hispanic males and females, it is the 4th and 6th leading cause of death among American Indian and Alaska Native males and females, respectively. Risk factors for liver cancer include diabetes and/or obesity, alcohol-related liver disease, hepatitis B and C infection and metabolic disease (Ryerson, et al., 2016).

Dr. Espey also touted the benefits of collaborating around primary prevention to improve health outcomes in American Indian and Alaska Native populations. Good Health and Wellness in Indian Country (GHWIC), a five-year program funded by CDC in 2015, aims to 1) reduce rates of death and disability from tobacco use, 2) reduce prevalence of obesity and 3) reduce rates of death and disability from diabetes, heart disease and stroke.

As part of the program, 12 tribes use community-driven, culturally adapted strategies that make healthy lifestyles easier, such as reducing commercial tobacco use and exposure; improving nutrition and physical activity; increasing support for health literacy; and strengthening team-based care and community-clinical links. The tribes receive leadership, technical assistance, training and resources from 11 tribal organizations in their Indian Health Service (IHS) Administrative Areas.


Panel discussion on “Unique Characteristics of Tribal Communities and the Impact of Cancer Control.”

Kim Marcucci, BFA of the Southcentral Foundation moderated the panzel discussion. Individual presentations are summarized below.

Panelist 1: Kris Rhodes, MPH of the American Indian Cancer Foundation presented on the “Role of Tobacco in Healthy Native Communities.” Ms. Rhodes quoted an Anishinabe Elder: “When [tobacco] is used correctly, it has the power to bring good things and, like other medicines, if it is used incorrectly, it has the power to bring great harm” to illustrate the nuance of tobacco control and importance of broad and comprehensive efforts to change norms in American Indian communities.

Kris RhodesMs. Rhodes explained that for many tribes, tobacco is considered a special gift from the creator, and is traditionally used as a communication tool for prayers, medicine and offerings to show respect when asking for help. The tobacco is not always burned, but when it is, it is not inhaled. Traditional tobacco is typically not available in stores and may sometimes be a mixture that does not contain any actual tobacco. In contrast, and of public health concern, is commercial tobacco, or tobacco available for purchase in stores including loose tobacco and cigarettes.

Ms. Rhodes provided some of the historical contexts for the loss of traditional Indian cultural teachings: “In the early 20th century, American Indians were ostracized and traditional ways were devalued due to public policy and procedures within social institutions. As a result, Indian ceremonies, which included the use of Indian tobacco, were conducted in secret and native language was spoken only in homes or private places. Traditional tobacco knowledge was not necessarily passed to the next generation. The generation that was born from parents who attended boarding school were then less likely to be introduced to traditional Indian tobacco and didn’t know the difference between this and harmful commercial tobacco. In recent generations, [some] American Indian people have revitalized ceremonial beliefs and practices [...however, there] may be a disconnect with commercial tobacco commonly being used in our ceremonial ways, given the lack of access to traditional tobacco products.”

In addition, historical trauma in American Indian communities is evident and manifest in a variety of ways, notably as violence and addiction that outnumber occurrences in the general population. “We have enormous challenges around healing our spirits from historical trauma and from resulting addictions that often lead to additional trauma. When a person is addicted to a substance, such as commercial tobacco, the substance itself loses all spiritual value.”

Thus, Ms. Rhodes advocated for comprehensive policies, systems and environmental approaches to addressing harmful tobacco use by targeting social determinants of health that underlie disparities in cancer and chronic diseases among American Indian populations. This comprehensive approach includes enacting a “tribal ordinance that disallows harmful tobacco use inside the building and 25 feet outside the building,” growing traditional tobacco in community gardens and providing education for community members.

 Resource: 

Panelist 2: Diana Redwood, PhD, MPH of the Alaska Native Tribal Health Consortium presented on “Colorectal Cancer Prevention in the Alaska Tribal Health System.”

              Dr. Redwood reported on the successes of the Alaska Native Tribal Health Consortium’s (ANTHC) Colorectal Cancer Control Program (2009-2015), which aimed to increase colorectal cancer screening among Alaska Native and American Indian people through the provision of direct screening services, provider education, community outreach and education and policy and systems-level improvements. There was a 28% increase in the Alaska Native colorectal cancer screening rate since the initiation of the program compared to the 3% annual increase nationally. Further, although the screening rates among Alaska Native peoples were lower than that of non-Natives before the program, it is now at 64%, which is higher than the non-Native rate of 61%. While this progress is encouraging, Alaska Native screening rates still do not meet Healthy People 2020 or 80% by 2018 goals.

An important strategy for the program has been to hire and train culturally knowledgeable and sensitive Alaska Native and American Indian people who are able to connect with clients and help get them screened. The program held annual trainings on topics including patient navigation, social marketing, motivational interviewing and health literacy; periodic teleconference in-services; and half-day presentations at the statewide Community Health Aide Program (CHAP) annual training.

The ANTHC Colorectal Cancer Program also partnered with Make It Your Own (MIYO), other tribal colorectal cancer control program grantees and cancer education staff at ANTHC to develop Alaska Native culturally-relevant small media, including patient reminder cards, brochures, posters, newsletters, videos and digital stories as part of “The Cancer I Can Prevent” campaign, featuring previously screened Alaskans sharing their screening stories. As a result, ANTHC, along with the Alaska Colorectal Cancer Partnership (ACCP) won Prevent Cancer Foundation’s 2014 National “Screening Saves Lives” Challenge and received a $7,500 grant, which was used to produce video testimonials to further advance the campaign.
Having received feedback from elders and other Alaska Native people that wanted more humor and light-heartedness in cancer prevention messaging, the ANTHC Colorectal Cancer Control Program responded by purchasing Nolan the Colon, a giant inflatable colon with colon screening information. Nolan the Colon travels around the state with staff, some wearing Polypman costumes, to reach and promote colorectal cancer screening to community members. A study on the effects of this effort found that Nolan the Colon significantly increases knowledge of colorectal cancer screening, intention to screen and comfort talking about screening with friends and family (Redwood, Provost, Asay, Ferguson, & Muller, 2013).

 Resource: 

Panelist 3: Delf Schmidt-Grimminger, MD, MBA of the University of South Dakota presented on “Unique Characteristics of Tribal Communities and the Impact on Cancer Control.” Dr. Grimminger stressed the importance of getting to know the intended audience of any program or study in any community, including the American Indian and Alaska Native populations. This can include talking directly to the intended audience, health board or tribal council; exploring existing cancer programs and infrastructure; and getting to know tribal needs and wants. In particular, Dr. Grimminger recommended forming a Community Advisory Board (CAB) to help understand the uniqueness of the tribe and their history; design the project; answer ethical, religious and social questions; resolve barriers and problems that may arise during the project; and help find local staff and resources. Further, being transparent and visible and providing routine updates in person whenever possible, are vital ways to build and maintain trust.

When conducting research with community members, key questions to ask include: Who owns the data? Is it alright to publish? What happens to the remaining samples? How and where should the data and samples be stored?

Further, in light of the fact that there have unfortunately been past abuses in patient protection, researchers need to be aware of and abide by federal regulations to ensure that benefits, risks and purpose of the research are communicated to participants during the informed consent process. Scientific review, Institutional Review Boards (IRBs) and Data and Safety Monitoring Boards (DSMBs) are also mechanisms to ensure data integrity and minimization of risk.

 


Panel discussion on “Developing and Accessing Tribal Data at National, Regional, State and Tribal-Specific Levels.”

Noel Pingatore, BS, CPH of the National Native Network and Inter-Tribal Council of Michigan moderated the panel discussion. Individual presentations are summarized below.

Panelist 1: Donald Haverkamp, MPH of CDC presented on “American Indian and Alaska Native Colorectal Cancer Screening Data.” Mr. Haverkamp stressed the importance of colorectal cancer screening surveillance in American Indian and Alaska Native populations, as American Indians and Alaska Natives are more likely to be diagnosed with late stage colorectal cancer and more likely to be diagnosed before age 50 at 16.92% compared to Non-Hispanic Whites at 8.08% (Perdue, Haverkamp, Perkins, Daley, & Provost, 2014). Furthermore, from 1990-2009 there was no decline in the death rate from colorectal cancer among American Indian and Alaska Native men and women.

Mr. Haverkamp also provided historical context: colorectal cancer screening was added by IHS as a Government Performance Results Act (GPRA) measure in 2006 and the measure was changed in 2013 to align more with the United States Preventive Services Task Force (USPSTF)  recommendations and the Healthcare Effectiveness Data and Information Set (HEDIS) measure. Mr. Haverkamp also reiterated that current colorectal cancer screening among the IHS user population remains below the Healthy People 2020 goal of 70.5%, as well as the 80% by 2018 goal, although screening rates have steadily increased from 35% in 2013 to 38.6% in 2015.

Another colorectal cancer screening data source for the American Indian and Alaska Native populations is Behavioral Risk Factor Surveillance System (BRFSS) surveys, which collects data in all 50 states, the District of Columbia and three U.S. territories. Limitations of BRFSS include the fact that its data include a small number of American Indians and Alaska Natives, leading to unstable estimates; the core module does not collect data on Tribal Affiliation; and American Indians and Alaska Natives in general have lower rates of household phone coverage than the general U.S. population, which makes them harder to survey. However, when BRFSS survey data analyses are restricted to Contract Health Service Delivery Area (CHSDA) counties, they can provide more accurate estimates of colorectal cancer screening among American Indians and Alaska Natives. The CHSDA counties are counties that  contain federally recognized tribal lands or those that are adjacent to tribal lands, which provide more accurate race classifications for American Indians and Alaska Natives: 64% of the American Indian and Alaska Native population resides in the 637 CHSDA counties.

Conducting Tribe-specific BRFSS surveys is a way to provide an estimate for colorectal cancer screening that is very specific to the community surveyed, and estimates can be quite different than state or regional BRFSS estimates. Tribal BRFSS can also have higher participation and survey response when conducted by a local entity such as a Tribal Health System or Tribal Epidemiology Center that are known to the community. Tribes want tribal-specific cancer data, and would like to conduct their own tribal BRFSS surveys.

Panelist 2: Melissa Jim, MPH of CDC presented on “Developing and Accessing Data at the National, Regional and Tribal Specific Levels.” Ms. Jim highlighted complications associated with data collection among the American Indian and Alaska Native population such as race misclassifications in cancer surveillance and vital statistics databases and variances by state. Thus, decreasing misclassification can improve accuracy of health indicators, program planning and resource allocation.

Ms. Jim gave an overview of the history of data collection in the U.S.  Prior to 1992, the Surveillance, Epidemiology and End Results Program (SEER) covered 14% of the U.S. population. However, in 1992, the Cancer Registry Amendment Act authorized CDC to establish the National Program of Cancer Registries (NPCR).  With SEER and NPCR combined, the entire U.S. population is covered, which allows epidemiologists to obtain national cancer incidence data; monitor cancer trends over time nationally and regionally; describe cancer patterns in special populations; describe and investigate rare cancers; guide planning and evaluation of cancer control programs; provide data for prioritization of health resources; and advance clinical, epidemiologic and health services research.

Administrative records from IHS were linked with central cancer registries, including SEER and NPCR. The process included identifying American Indian and Alaska Native cases that were misclassified as non-Native. As a result of the IHS linkage, the number of individuals identified as American Indians and Alaska Native increased in all IHS regions and cancer rates among American Indians and Alaska Natives increased for all IHS regions compared to U.S. non-Hispanic Whites between 1999 and 2004 (Espey et al., 2007). The rates after the linkage are considered to be more accurate.

State death records are also in the process of being linked with IHS records. Preliminary data show that death rates among American Indians and Alaska Natives increased in each state, albeit at varying levels, after the linkage.

Ms. Jim also introduced the Mortality to Incidence Ratio (MIR) as an indicator of survival that compares fatality between groups. It is calculated as the age-adjusted death rate divided by the age-adjusted incidence rate. It is thought to be more accurate than “relative survival,” and is easy to calculate from existing cancer incidence and mortality data. MIR is also thought to be a potentially useful proxy for estimating cancer survival; however, it is not a widely used indicator and there are currently few publications using it. Mary C. White and colleagues compared MIR for all cancer sites combined by region for American Indians and Alaska Natives compared with non-Hispanic Whites in CHSDA counties, and showed that “greater progress in cancer control was achieved for White populations” compared with American Indian and Alaska Native populations over the last two decades (White et al., 2014). These disparities are likely related to lower socioeconomic status and lack of health care access among American Indians and Alaska Natives. This population is also consistently diagnosed at later stages, particularly for cancers that can be prevented with screening.

Ms. Jim also provided tribe and state-specific data sources. For example, in Oklahoma, the American Indian population does not reside within reservation boundaries, so is more heterogeneously distributed throughout the state. Therefore, the standard method of classifying race does not reliably document American Indian births and deaths and special attention should be paid to the data when studying race-related information. Oklahoma Vital Records are undergoing the process of linking with the revised IHS Racial Categories.

Data sources on cancer for the Navajo include incidence data from the New Mexico Tumor Registry and the Arizona Cancer Registry and mortality data from SEER and American Indian and Alaska Native Mortality Data (AMD). Navajo-proxy mortality data include Arizona’s data in Apache, Coconino and Navajo counties; New Mexico’s data in McKinley and San Juan counties; and Utah’s data in San Juan County.

Ms. Jim also presented on the Haudenosaunee  Nations (People of the Longhouse), the largest Confederacy of tribes that are distinctly related in the East and connected by clans, bloodlines, culture, traditions, politics, environment and European contact. CDC is currently analyzing aggregate mortality data to provide an accurate picture of health disparities for all enrolled/non-enrolled members of the Haudenosaunee and provide current data for modifying interventions and health systems.

 Resources:

Panelist 3: Glenn Copeland, BBA, MBA of the State of Michigan presented on “Developing Useful Data on American Indian Health: Addressing the Problem of Misreporting—The Michigan Approach.” Mr. Copeland gave background information on Michigan’s efforts to improve available data, including establishing a cancer epidemiology collaboration with the University of Michigan and Inter-Tribal Council of Michigan to explore possibilities for analyses and student interns to help with the work. At around the same time, an exploratory meeting was organized with tribal health coalition staff in September 2006 in Traverse City, with CDC assignees to IHS, Great Lakes Inter-Tribal Council, Inter-Tribal Council of Michigan, and various tribal health representatives in attendance.

Meeting attendees discussed issues of misclassification and examples of how linkages could improve data quality. Attendees decided to focus on providing each tribal organization with analytical files and improving statewide data by developing a framework to address confidentiality at the patient and tribal-levels and to maintain tribal control. The Inter-Tribal Council of Michigan agreed to work with tribes on logistics and provide analytical support.

This work is organized so that it is initiated by the tribes; agreements are written; linkage to cancer, mortality and live birth data are jointly monitored by tribe, state and inter-tribal council staff; and analytical files are developed thereafter. The resulting de-identified files are sent to the tribes and all identifiable files are shredded. The result is an agreed-upon analytical data set for tribal use, which is de-identified with selected variables that can produce tribal data reports and help shape tribal health initiatives. At the same time, the state is able to develop linkage-adjusted data to significantly improve the accuracy of race and ethnicity classifications within statewide data files.

Future directions for the initiative include continuing the service and expanding linkages to better incorporate mortality and natality data; finding alternatives to census data on American Indian and Alaska Native populations by working toward tribal denominators; identifying resources for live birth linkage and analysis; and continuing efforts to improve statewide data and exploring regionalized data.

Panelist 4: Bonnie Culfa, RN, MSN of the Sault Ste. Marie Tribe of Chippewa Indians Health Division presented on “The Cancer Report: 1998-2012.” Ms. Culfa provided background information on Michigan’s Vital Records, which underestimates the burden of death from specific preventable diseases among American Indians, as American Indian people are often reported as White on their death certificates or medical records. In 2015, a linkage was conducted as a partnership between the Sault Ste. Marie Tribe of Chippewa Indians, the Michigan Department of Health and Human Services, the Michigan Public Health Institute, and the Inter-Tribal Council of Michigan. The process allowed the tribe to correctly label its own members within the state vital records by directly linking tribal enrollment data with state records. The linkage showed a total of 1,254 mortality cases among Sault Tribe members from 2004-2013.

Between 2004-2013, cancer was the leading cause of death among Sault Tribe members living in Michigan. Compared to the state as a whole, Sault Tribe members had higher rates of death due to cancer, chronic lower respiratory diseases, diabetes, suicide and kidney disease. Compared to the state as a whole, Sault Tribe members had lower rates of death due to accidents, stroke, and influenza and pneumonia.

The results of the Sault Tribe linkage project demonstrate that the community is impacted by significant health disparities, such as high rates of deadly lung cancer and low survival rates for breast cancer patients. Ms. Culfa gave recommendations for improvement focusing on clinical treatment and prevention of various cancers and risk factors, particularly commercial tobacco abuse: 1) Implement and maintain a comprehensive commercial tobacco control program and 2) Screen, treat, and prevent breast, colorectal and lung cancers.


Summit participants gathered by CDC regions for working session discussions on opportunities to decrease disparities in American Indian and Alaska Native Communities to inform their action plans (Table 1). 

The afternoon working sessions were moderated by Linda Burhansstipanov, MSPH, DrPh of Native American Cancer Research Corporation.

CDC Regions and corresponding tribes that participated in the working sessions together led by CDC program consultants were:

  • Region E: Fond du Lac Band of Lake Superior Chippewa​

  • Region F: Cherokee Nation and Kaw Nation

  • Region H: Cheyenne River Sioux and Great Plains Tribal Chairmen’s Health Board

  • Region I: Hopi Tribe, Navajo Nation and Tohono O’Odham Nation

  • Region J-1: Southeast Alaska Regional Health Consortium, Alaska Native Tribal Health Consortium, Arctic Slope, Southcentral Foundation and Yukon-Kuskokwim Health Corporation

  • Region J-2: Native American Rehabilitation Association, South Puget Intertribal Planning Agency, Northwest Portland Area Indian Health Board and California Rural Indian Health Board

The working session was followed by a recap and evaluation of the day's activities along with a preview of the following day with Jen Olson, MS of the South Puget Intertribal Planning agency, Ena Wanliss, and Annie Brayboy of CDC.

Table 1: Summary of top three opportunities to decrease cancer disparities in American Indian and Alaska Native communities reported by regional working sessions


Figure 1: Word cloud of summit participants’ responses to the question: “In your own words, what is the current state of cancer control in Indian Country?” (n=18)

 

As part of efforts to evaluate the summit, participants were asked a different question each day of the summit and asked to provide qualitative feedback by writing on large sticky notes to put up on display. On Day 1, the question was: “In your own words, what is the current state of cancer control in Indian Country?” (Figures 1 and 2). Responses reflected participants’ attitudes and recognition of progress that has been made in cancer control with some writing that there are “pockets of good work” and that efforts are headed “in the right direction.”

The responses also hinted at challenges and areas for improvement, such as a renewing focus on primary and secondary prevention and increasing access to tribal-specific data, collaboration and funding.

Evaluation results from surveys administered at the end of the summit are also available near the end of the report.

Figure 2: Summit participants’ responses to the question: “In your own words, what is the current state of cancer control in Indian Country?” (n=18)


The final event of the first day was an nDigi Fest, sponsored by the California Rural Indian Health Board and the National Native Network.

The cultural exchange through “digital storytelling,” featured stories that cover the many aspects of cancer prevention, education, care and treatment. The program celebrated and honored cancer-related, Native-focused digital stories that were culturally unique and powerfully healing. The presentation was moderated by Brenda K. Manuelito and Carmella Rodriguez of nDigiDreams.

The event opened with a prayer from Daisy Kostus of the Cree First Nation of Waswanipi, and an Eagle Staff presentation that was conducted by Linda Woods from the Grand Traverse Band of Ottawa and Chippewa Indians.

Stories included titles “Zaagidiwin (Love)” told by Punkin Shananaquet of the Lac Courte Oreilles/Match-e-be-nash-she-wish Band of Potawatomi; “Stage 2…Stage 3” by Rita McDonald, Cancer Navigator for Northern  Cheyenne Tribe, “Lessons Learned” told by Donald Sumners of the Pokagon Band of Potawatomi Indians, “Yuuluaqaucirkaq (Healthy Way of Living)” told by Agnes Roland of the Yupik, “My Mother Prayed Cancer Away” told by Ophelia Spencer of the Navajo, “Nikaanag (My brothers, my friends)” told by Dr. Erich Longie of the Spirit Lake Sioux, “Gift of Another Day” told by Dr. Suzanne Cross of the Saginaw Chippewa Indian Tribe, and “Calling on the Great Spirit” by Daisy Kostus.

Organizers and storytellers of nDigi Fest

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Embracing Policy, Systems and Environmental Approaches to Address Cancer Disparities Among American Indian and Alaska Native Communities

 

 

The second day of the American Indian/Alaska Native Cancer Summit opened with Sharon Johnson, Fond du Lac Wiidookaage Cancer Team Chairwoman, offering an opening prayer. Ena Wanliss and Annie Brayboy from CDC and Noel Pingatore from National Native Network and Inter-Tribal Council of Michigan summarized the accomplishments of Day 1 and objectives of Day 2.

Jeffrey Henderson, MD, MPH of Black Hills Center for American Indian Health was the day’s keynote speaker. Dr. Henderson’s presentation on “The Curious Case of Cancer in American Indians and Alaska Natives: Using Policy to Influence Change,” began by echoing Day 1 presentations on barriers to getting a complete picture of the impact of cancer in American Indians and Alaska Natives, from racial misclassification and incomplete coverage of the population by surveillance efforts.

Dr. Henderson outlined the Multilevel Model of Disease Causation (also known as the Ecosocial Model of Population Health,) as shown in Figure 3, where individual and population health influence the physical environment, and the physical environment influences the individual and population health (Kaplan, Everson, & Lynch, 2000). Due to these intersections of ecosocial factors that impact health outcomes, Dr. Henderson emphasized the importance of using policy strategies to influence change.

Tobacco and smoking-related policy is key to improving outcomes in American Indian and Alaska Native populations. Smoke-free policies are not the only strategy to affect change. For example, Navajo Nation is working to increase cigarette tax rates, which is currently at 40 cents per pack. There are clear health and economic benefits to increasing cigarette taxes in Navajo Nation: Increasing taxes to 75 cents per pack is predicted to lead to approximately $480,000 in additional state tax revenues per year, a 6.5% decline in youth smoking, 500 fewer youth and 200 fewer adult smokers and $10.7 million in health savings. Increasing taxes to $1.50 per pack is expected to lead to approximately $890,000 in additional state tax revenues per year, a 13% decline in youth smoking, 1,000 fewer youth and 400 fewer adult smokers and $21.3 million in health savings.

Policy change is not easy. A major barrier is commercial tobacco companies selling cigarettes in casinos. Additionally, passing legislation to protect populations from secondhand smoke has proven to be challenging.

Through health education, communication and advocacy, there have been notable successes, such as the passage of the Azeé Bee Nahaghá of Diné Nation Commercial Tobacco-Free Resolution in 2014, which banned commercial and smokeless tobacco from being used during prayer service. President Shelly of Navajo Nation also issued an Executive Order in 2014 to make workplaces smoke-free. Such policy-level efforts also extended to the casino industry: Ho-Chunk Gaming became the first tribal casino in Wisconsin to be tobacco-free in 2015.

Dr. Henderson also highlighted the food environment as an area where policy can be used to influence change, such as implementing taxes on junk food. The clinical environment is another key area for policy change, as evidenced by the Affordable Care Act’s support for preventive measures. Policy change can also be effective in protecting populations from environmental exposures and increasing workplace safety.

Dr. Henderson concluded his presentation by recommending increased community, tribal, clinical and national leadership and government financial support; further research to determine effective preventive interventions; replication of proven interventions; ongoing behavioral surveillance to gauge progress; and greater participation of tribes and communities in the efforts to improve health.

 


 

Panel discussion on “Embracing Policy, Systems and Environmental Approaches to Address Cancer Disparities in American Indian and Alaska Native Communities.”           

Richard Mousseau, MS of the Great Plains Tribal Chairmen’s Health Board and Linda Burhansstipanov, MSPH, DrPH of Native American Cancer Research Corporation moderated the panel discussion. Individual presentations are summarized below.

Panelist 1: Margie Burkhart, BA of Cherokee Nation Health Services presented on “Cherokee Nation Comprehensive Cancer Control.” Cancer is the second leading cause of death in Cherokee Nation, with lung, breast, prostate, colorectal and cervical cancers having the biggest impact. Native Americans in the Cherokee Nation Tribal Jurisdictional Service Area continue to experience higher incidence rates than the rest of the Oklahoma population for some of the most common types of cancer. Further, a 2011 survey conducted by Cherokee National Public Health Programs found that only 40% of Cherokee adults reported exercising vigorously for at least 150 minutes per week and less than 2% reported eating five or more fruits and vegetables every day.

The Learn to Grow garden project was created in response to community needs, and provides hands-on learning experiences in the garden and kitchen to young children in family child care homes, centers and Head Starts in eight counties in Northeast Oklahoma. Children learn about fresh fruits and vegetables and are encouraged to start a garden at home with their parents.  Trained child care providers also incorporate the harvested vegetables into children’s lunch and snacks, and children set up stands at farmers markets where “veggie bucks” are used to buy and sell vegetables such as cucumbers, squash, bell peppers, tomatoes and onions.

Approximately 4,000 children enrolled in Learn to Grow in 2016, and since the average size of household families in child care is 3.5, the estimated reach is approximately 14,000 children and family members. Learn to Grow also received recognition from First Lady, Michelle Obama, for its contribution to promoting healthy eating and weight in the community.

Panelist 2: Eric Vinson of Northwest Portland Area Indian Health Board presented on “Health Policy in the Northwest: Past, Present and Future.” Mr. Vinson began by providing historical context to tobacco control policy efforts in the Northwest Portland Area. In response to survey findings showing 50% smoking rates among American Indians in the Northwest region and high rates of smokeless tobacco use among youth, the Northwest Portland Area Indian Health Board launched the Tribal Tobacco Policy Project in 1987. As part of the project, staff members created and piloted a workbook with a policy template for tribal resolution; made site visits with tribal health directors, health educators, clinic nurses, prevention counselors, human resources coordinators, youth coordinators and tribal health committees; and gave formal presentations to the tribal council with a tribal advocate. As a result, 32 of the 36 tribal programs developed a Tribal Tobacco Policy.

As part of the Western Tribal Tobacco Prevention Project in 1996, the Northwest Portland Area Indian Health Board worked with tribes and states to discuss methods to increase tobacco taxes, engage tribal programs and secure funding for tribal programs. Stemming from these efforts, the Tribal Comprehensive Cancer Control plan was written in 1998; the National Tobacco Network was created in 2000; the Northwest Portland Indian Health Board was funded in 2003; and CDC provided national funding in 2006.

Presently, Northwest tribes are addressing public health policy issues through the Special Diabetes Program for Indians (SDPI) in Community and Competitive Grants focusing on primary prevention and cardiovascular disease; the Child safety seat study; tribal tobacco policy and prevention by providing state funding to Idaho and Oregon; and the Northwest Portland Area Indian Health Board tribal resolution supporting the tribal comprehensive cancer plan. Priority topics for policy change include safe walking trails, seatbelt survey and law, healthy food, immunizations, childhood obesity prevention and tobacco control.

Tobacco control remains a priority, as tribal BRFSS reports show high rates of current smoking in tribes in Northwest Portland Area, ranging from 23.1% in one tribe to 33.5% in another.

 Resource:

Panelist 3: Evelyn Watchman of Navajo Nation presented on the “Navajo Nation Breast and Cervical Cancer Prevention Program (NNBCCPP),” a CDC cooperative agreement that first started in 1996. Its purpose is to increase screening rates and decrease morbidity and mortality rates of breast and cervical cancer. The program provides clinical navigation, including mammography screenings, Pap tests, ultrasounds, colonoscopies and referrals, as well as community navigation, including individual and group education, chapter meetings, school health and tribal fairs.

There are cultural barriers, such as traditional diagnoses that may confuse patients and stigma or taboo that may lead patients to refuse to acknowledge cancer symptoms. Mammograms can also be painful and lead to missed appointments. Environmental and transportation barriers to care exist in Navajo Nation, from unpaved roads to infrastructure erosion due to national disasters.

To lower these barriers and increase screening, NNBCCPP advocated for implementing a two-hour administrative leave for Western Navajo Nation employees so they can attend the annual fair. The Navajo Nation President and Vice-President’s office approved the memorandum.

NNBCCPP also succeeded in getting the Mobile Mammogram unit parked outside a grocery store parking lot. To incentivize screening, patients were given roses and were entered into a drawing for a chance to win a designer purse. The winner of the drawing was announced after the Cancer Awareness Walk. The program also partnered with Bashas Corporation, who provided refreshments.

Ms. Watchman reported that NNBCCPP served 329 women during October Breast Cancer Awareness Month in 2015 through mobile mammography and a mini conference organized during Cervical Cancer Awareness Month in 2016. Strong partnerships with Tsehootsooi Medical Center Mobile Health Program and Hopi Breast and Cervical Cancer Program were key to their success. NNBCCPP is currently working to expand trainings with the Kayenta Public Health Nursing Program and Uranium Program to Hozho, which means to “promote quality of life.”

Panelist 4: Richard Mousseau, MS of the Great Plains Tribal Chairmen’s Health Board presented on “Using Policy, Systems and Environmental Change Approach to Increase Colorectal Cancer Screening.” As part of a CDC cooperative agreement, the Great Plains Tribal Chairmen’s Health Board aims to increase colorectal cancer screening rates in 18 tribes in four states: South Dakota, North Dakota, Nebraska and Iowa. There is great need for screening, as only 27% of American Indian adults between 50 and 75 years of age in the Great Plains region have been screened for colorectal cancer, according to 2015 GPRA measures.

Mr. Mousseau asserted that health programs must shift focus from changing individual behavior to changing policies, systems and environments to help communities make healthier choices to lower the burden of diseases such as obesity, diabetes and cancer. In addition, policy, systems and environmental change can make a positive impact across the cancer continuum: from prevention, early detection, diagnosis, treatment, quality of life, survivorship to end of life care.

Mr. Mousseau also made the connection between policy, systems and environmental approaches and many Great Plains tribes’ cultural beliefs of creating healthy habits and knowledge for future generations, which is encapsulated in the sacred hoop of life and interdependent relationships of the tribal environment.

Mr. Mousseau unpacked what policy, systems and environmental approaches mean in the context of American Indian communities. First, policy interventions aim to change laws, ordinances, tribal resolutions and regulations. For example, policies allowing flex time can be useful in creating opportunities for employees to schedule a screening for colorectal cancer screening during the day and maintain their expected number of work hours.

Second, systems interventions aim to change interconnected elements of a tribe or tribal organization or community. For example, reminder intervention systems can be implemented to prompt colorectal cancer screening in IHS clinics, hospitals and tribal health programs.

Third, environmental interventions aim to bring physical or material changes to the economic, social or physical environment. For example, communities can be designed with safe walkways to encourage physical activity.

 Resources:

 


 

CDC program consultants led afternoon working session discussions on policy, systems and environmental approaches to address cancer disparities in American Indian and Alaska Native communities to inform their action plans (Table 2).

The working session was followed by a summary and evaluation along with a preview of the following day with Ena Wanliss, and Annie Brayboy of CDC.

 


 

In a similar fashion to Day 1, attendees were asked to provide qualitative feedback by writing on large sticky notes to put up on display. On Day 2, the question was: “What is the most significant and unique challenge or barrier that remains in cancer control in Indian Country?” (Figures 4 and 5).

Barriers to access to health services, including lack of transportation, health care facilities and providers as well as long distances to facilities dominated the responses. A lack of patient navigation services was also mentioned as a barrier, and could help mitigate other access barriers.

Programmatic barriers include limited funding, resources and commitment from IHS for cooperation and partnership. Lack of culturally-tailored and tribal-specific program designs is also a barrier for cancer control in Indian Country. There were calls for increased focus on community-driven programs, prevention strategies and integration of cancer and chronic disease efforts. Challenges associated with data collection and dissemination to demonstrate the need for further resources were also mentioned.

Evaluation results from surveys administered at the end of the summit are also available near the end of the report.

Figure 5: Summit participants’ responses to the question: “What is the most significant and unique challenge or barrier that remains in cancer control in Indian Country?” (n=44)

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Finalizing Action Steps and Call to Action

 

The third and last day of the American Indian/Alaska Native Cancer Summit opened with a prayer offered by Karen Morgan of the Alaska Native Tribal Health Consortium. Ena Wanliss and Annie Brayboy from CDC summarized the accomplishments of first two days and objectives of Day 3.


Summit participants gathered by CDC regions to discuss and report back with summaries of their action plans and recommendations for cancer prevention and control in Indian Country over the next decade (Tables 3-8).

Judith Muller, MHA of Alaska Native Tribal Health Consortium and DeAnna Finifrock, MSN, PHN of the Fond Du Lac Reservation Cancer Program moderated the discussion. 

Participants also shared their “take-home points” from the summit, including:

  • Data is important to inform program activities and funding opportunities.

  • Solutions are built within the American Indian and Alaska Native communities. Learning from communities’ successes and challenges is important.

  • nDigi Fest was moving and increased understanding of cultural nuances.

  • Commitments from CDC and the Comprehensive Cancer Control National Partnership to build stronger and healthier communities were demonstrated.

  • Collaboration is important to address the challenges American Indian and Alaska Native communities face.

  • Continued communication is paramount. There is a need for tribal leaders, or potentially CDC, to facilitate bimonthly calls to maintain momentum.

  • Data presented during the summit reinforced the unique challenges experienced by American Indian and Alaska Native populations, which CDC will keep in mind.

  • Feel empowered to go home and address cancer disparities and advocate for cancer programs.

  • Thankful for the opportunity to gather for the summit and engage in open discussion.

Table 3: Summary of overarching policy, systems and environmental priorities and action steps reported by Region E

Table 4: Summary of overarching policy, systems and environmental priorities and action steps reported by Region F

Table 5: Summary of overarching policy, systems and environmental priorities and action steps reported by Region H

Table 6: Summary of overarching policy, systems and environmental priorities and action steps reported by Region I

Table 7: Summary of overarching policy, systems and environmental priorities and action steps reported by Region J1

Table 8: Summary of overarching policy, systems and environmental priorities and action steps reported by Region J2


Lisa Richardson, MD, MPH of CDC gave the closing call to action on “Continuing the Momentum Beyond the Summit.” Dr. Richardson reviewed CDC’s related programs, including the National Breast and Cervical Cancer Early Detection Program, Colorectal Cancer Control Program, Comprehensive Cancer Control Program and National Program of Cancer Registries, and its seven grantees. In addition, the CDC-funded National Native Network is administered by the Inter-Tribal Council of Michigan and directed by a board composed of three other partner organizations.

Dr. Richardson echoed the importance of interventions focused on changing policies, systems and the environment to make individuals’ default decisions healthy. Dr. Richardson also reiterated CDC’s commitment to continued support for cooperative agreement awardees and activities and seeking and investing in new and innovative opportunities.


In similar fashion to Days 1 and 2, attendees were asked to provide qualitative feedback by writing on large sticky notes to put up on display. On Day 3, the question was: “What technical assistance can help you meet American Indian and Alaska Native (AI/AN) programmatic and community needs?” (Figures 6 and 7).

Many participants want more technical assistance on culturally-appropriate and tribal-specific evaluation, communication/messaging and education materials to promote screening and other health services. Similarly, participants want assistance adapting and translating evidence-based interventions (EBIs) to their communities. There is also a need for technical assistance for writing compelling grants and success stories with tribe and community-specific data. Some participants asked for CDC and other organizations to bridge the gap between tribal programs and IHS.

Evaluation results from surveys administered at the end of the summit with further information on technical assistance needs are also available near the end of the report.

 


 

To close the summit, participants held hands in a circle around the perimeter of the conference room, as Eldon Kalemsa of the Hopi Tribe led the prayer.

 

 

 

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After the summit, participants were asked to complete a survey, made available in paper and electronic format, to assess satisfaction with and outcomes of the summit and ways to improve similar meetings in the future. Of the 53 attendees who completed the survey, 23 (43%) represented the American Indian and Alaska Native (AI/AN) National Breast and Cervical Cancer Early Detection Programs (NBCCEDP); 11 (21%) represented AI/AN Comprehensive Cancer Control Programs (NCCCP); 8 (15%) represented CDC staff; 4 (8%) represented other National Partnership staff; 2 (4%) represented AI/AN Coalition Members; 2 (4%) represented AI/AN Colorectal Cancer Control Programs; 2 (4%) represented State NBCCEDP; and 1 represented State NCCCP (2%) (Figure 8). The vast majority of attendees were program coordinators, managers and directors, as well as American Indian and Alaska Native coalition members and data managers (Figure 9), and have held their roles for over two years (Figure 10).

Attendees were also asked in the survey to rate their satisfaction and the process of the summit from 1 (strongly disagree) to 5 (strongly agree). On average, summit attendees agreed that they met their personal and professional goals; the location, timing and content of the summit were appropriate; and their knowledge about cancer control and challenges and opportunities relating to policy, systems and environmental approaches in Indian Country increased (Table 9). 

 

The most valuable components of the summit reported in freeform by attendees included:

  • Networking not only between different tribes, but also with CDC consultants and Comprehensive Cancer Control National Partnership members (n=23);

  • Working sessions, with some specifying the value of discussing goals and creating action plans (n=16); and

  • Presentations, particularly those on data, policy, systems and environmental approaches and other programs’ successes (n=12).

Areas for improvement for future summits include:

  • Increased coordination of presentations, as some survey respondents thought there were too many presentations with overlapping content, especially on data, which some felt were too didactic (n=9);

  • Increased opportunity to network, such as including ice breakers at the beginning of the summit, time to talk specifically to CDC program consultants and work with attendees from regions other than their own (n=4);

  • More central location for meetings, as travel times were strenuous for some. Some also suggested starting the day later to help attendees adjust to the time difference (n=3);

  • Conduct a pre-conference survey to aid agenda setting (n=1);

  • Have an American Indian and Alaska Native attendee lead the working sessions instead of CDC program consultants (n=1);

  • Organize the cultural exchange around lunch time to increase attendance (n=1);

  • More stretch breaks (n=1); and

  • Offer healthier meal options (n=1).

Missing stakeholders survey respondents indicated they would like to see at the next summit are:

  • IHS representatives (n=26);

  • Tribal council members and leaders (n=7);

  • More National Comprehensive Cancer Control Programs, including Susan G. Komen, Leukemia and Lymphoma Society and National Association of Chronic Disease Directors (NACDD) (n=4);

  • State cancer programs (n=3);

  • Centers for Medicare and Medicaid Services (CMS) (n=2);

  • Policymakers (n=2);

  • Chikasaw Nation representatives (n=1);

  • Data managers (n=1); and

  • Other non-funded tribes (n=1).

Future topics of interest to be potentially covered in future summits include:

  • Updates and successes on regional or program progress (n=5);

  • Culture and traditions (n=3);

  • Grant writing and capacity building (n=3);

  • IHS plans and partnership development (n=3);

  • Program evaluation (n=3);

  • Communication and media campaigns (n=2);

  • Success stories and models (n=2);

  • Cancer and chronic disease integration (n=1);

  • Cancer care plans (n=1); and

  • Inter-tribal mentorship (n=1).

Technical assistance needed as identified by survey respondents are:

  • Data collection and sharing (including Electronic Health Records) (n=7);

  • Evaluation (n=7);

  • Communication, dissemination and promotion (n=6);

  • Grant writing (n=2);

  • Testing evidence-based and culturally-tailored interventions (n=2);

  • Mentorship (n=1);

  • Coalition building (n=1); and

  • Momentum-building after the summit (n=1).

As the evaluation results show, the summit provided an opportunity for American Indian and Alaska Native cancer programs, coalitions, CDC staff and stakeholders to network, share ideas and plan activities to reduce cancer disparities. American Indian and Alaska Native programs and coalitions seek support with data collection, evaluation and communication, among others, as well as increased and sustainable funding to continue their work reducing barriers to care in their communities.

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For more resources, visit GW Cancer Center’s Cancer Control Technical Assistance Portal’s (TAP) searchable Resource Repository of tools and resources, including reports, toolkits, fact sheets, infographics and trainings. New resources are added regularly, and readers are also encouraged to submit resources to be added to the repository.

GENERAL:

American Indian Cancer Foundation (AICAF) lists resources derived from the Tribal Health Equity and Healthy Native Foods project, among others.

Comprehensive Cancer Control TAP “is a centralized website the pulls together existing and new technical assistance.”

Intercultural Cancer Council and Caucus (ICC) Library lists fact sheets, publications and reports on cancer disparities.

National Native Network Resource Library and Northwest Portland Area Indian Health Board (NPAIHB) Resource Library collate resources on tribal comprehensive cancer control efforts.

National Association of Chronic Disease Directors (NACDD) Cancer Council “connects together all cancer program staff for knowledge sharing, brainstorming, problem solving and best practice dissemination pertaining to cancer control and prevention.”

Native American Cancer Research Corporation (NACR) lists NACR-developed resources including booklets, videos and fact sheets.

EVALUATION:

Gateway to Health Communication & Social Marketing Practice: Research & Evaluation “provides resources to help build your health communication or social marketing campaigns and programs.”

Implementing, Evaluating and Improving Your Communication Campaigns is a summary of the Ask-the-Expert session with Dr. Shawnika Hull from George Washington University’s Milken Institute School of Public Health, who shared tips and directions for evaluating communication programs.

National Colorectal Cancer Roundtable (NCCRT) Evaluation Toolkit provides “information and tools to help organizations or groups evaluate their efforts, measure outcomes, report their results and improve their programs over time.”

EVIDENCE-BASED INTERVENTIONS:

Best Practices in American Indian and Alaska Native Public Health addresses some successes and challenges of  Tribal Epidemiology Centers.

Joint Jurisdiction Courts: A Manual for Developing Tribal, Local, State and Federal Justice Collaborations is a “roadmap for tribal and community leaders who want to develop joint jurisdiction courts or initiatives in their own communities.”

Understanding the Issues: How to Use Community Assessment, Evidence and Theory to Inform Your Cancer Control Approaches is a summary of the Ask-the-Expert session with speakers from Cancer Prevention and Control Research Network (CPCRN).

GRANTS AND FUNDING:

Grants and Funding: Diversifying and Securing Resources for Cancer Control is a webinar recording featuring experts from comprehensive cancer control consortiums and coalitions.

Tribal Grant Writing Training: Enhancement, Evaluation and Promotion is “designed, specifically for tribes and tribal organizations, to increase knowledge on grant proposal development, writing a good abstract and grant evaluation.”

MEDIA AND COMMUNICATION:

80% by 2018 Communications Guidebook: Effective Messaging to Reach the Unscreened is designed to help educate, empower and mobilize audiences who are not getting screened for colorectal cancer.

Communication Training for Comprehensive Cancer Control Professionals 101: Media Planning and Media Relations “is an on-demand online training that walks participants through the process of media planning, creating media-friendly materials and building relationships with journalists.”

The Media Planning and Media Relations Guide “provides an overview of important content for planning and writing CDC-required media plans.”

Communication Plan Template “is designed to help Comprehensive Cancer Control professionals draft a solid Media/Communication Plan for their program/coalition's media and communication-related activities and for submission to comply with CDC requirements.”

Letter to the Editor Template and Example and Press Release Template and Example are fillable Word documents with delete-able prompts and examples.

Social Media Toolkits “are designed to help public health professionals establish a social media strategy built around various cancer awareness months, weeks and days.”

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Kaplan, G. A., Everson, S. A., Lynch, J. W. (2000). The contribution of social and behavioral research to an understanding of the distribution of disease: a multilevel approach,  In: Smedley B.  and Syme SL. Promoting Health: Intervention Strategies from Social and Behavioral Research, pp. 31-55 

Perdue, D.G., Haverkamp, D., Perkins, C., Daley, C.M., & Provost, E. (2014).Geographic variation in colorectal cancer incidence and mortality, age of onset, and stage at diagnosis among American Indian and Alaska Native people, 1990-2009. Am J Public Health, 104; S404-S414.

Redwood, D., Provost, E., Asay, E., Ferguson, J, & Muller, J. (2013). Giant Inflatable Colon and Community Knowledge, Intention, and Social Support for Colorectal Cancer Screening. Preventing Chronic Disease. Doi: http://dx.doi.org/10.5888/pcd10.120192  

Ryerson, A. B., Eheman, C. R., Altekruse, S. F., Ward, J. W., Jemal, A., Sherman, R. L., Henley, S. J., Holtzman, D., Lake, A., Noone, A.-M., Anderson, R. N., Ma, J., Ly, K. N., Cronin, K. A., Penberthy, L. & Kohler, B. A. (2016). Annual Report to the Nation on the Status of Cancer, 1975-2012, featuring the increasing incidence of liver cancer. Cancer. doi: 10.1002/cncr.29936.

White, M.C., Espey, D.K., Swan, J., Wiggins, C.L., Eheman, C., & Kaur, J.S. (2014). Disparities in Cancer Mortality and Incidence Among American Indians and Alaska Natives in the United States. Am J Public Health, 104:S377-S387.

Cancer Summit Planning Committee

Ena Wanliss, Co-Chair – Centers for Disease Control and Prevention
Annie Brayboy, Co-Chair – Centers for Disease Control and Prevention
Jacqueline Avery – Centers for Disease Control and Prevention
Durado Brooks – American Cancer Society
Margie Burkhart – Cherokee Nation
Margaret Farrell – National Cancer Institute
T’Ronda Flagg – Centers for Disease Control and Prevention
DeAnna Finifrock – Fond du Lac Reservation
Francine Hall – Cheyenne River Sioux Tribe
Don Haverkamp – Centers for Disease Control and Prevention
Joshua Hudson – National Native Network/Intertribal Council of Michigan
Melissa Jim – Centers for Disease Control and Prevention
Kanako Kashima – The George Washington University Cancer Center
Kate Landis – Southcentral Foundation
Ann Larkin – Centers for Disease Control and Prevention
Kim Marcucci – Southcentral Foundation
Raylene Miner – Cheyenne River Sioux Tribe
Richard Mousseau – Great Plains Tribal Chairmen’s Health Board
Judith Muller – Alaska Native Tribal Health Consortium
Jen Olson – South Puget Intertribal Planning Agency
Noel Pingatore – National Native Network/Intertribal Council of Michigan
Dana Russell – Hopi Tribe
Chris Sams – National Native Network/Intertribal Council of Michigan
Aubrey Villalobos – The George Washington University Cancer Center

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Introduction

Follow-up with Tribal Grantees and Stakeholders

Region E Updates
Region F Updates
Region H Updates
Region I Updates
Region J-1 Updates
Region J-2 Updates
Other Stakeholder Updates

Follow-up with Comprehensive Cancer Control National Partnership Stakeholders

Conclusion

Selected Additional Resources



Introduction

The Centers for Disease Control and Prevention (CDC) 2016 Cancer Summit titled “Looking Back and Looking Ahead: The State of Cancer Control in American Indian and Alaska Native (AI/AN) Communities,” convened current and former Division of Cancer Prevention and Control (DCPC) tribal grantees from five CDC regions, CDC staff and Comprehensive Cancer Control National Partnership (CCCNP) members from April 26 to 28, 2016 at the Grand Traverse Resort in Traverse City, Michigan.

The George Washington University (GW) Cancer Center conducted phone interviews with 13 attendees from tribal organizations and stakeholders in October and November, approximately six months after the summit, to assess action plan progress, new partnerships and needed technical assistance since the summit. GW Cancer Center also surveyed six CCCNP representatives. This report summarizes the findings.

Methods

The GW Cancer Center emailed all summit attendees on October 24, 2016, approximately six months after the summit was held, to recruit volunteers for 30-minute phone interviews. Volunteers scheduled a time for the interview using Google Appointments or by directly corresponding with the GW Cancer Center evaluator. Thirteen interviews were completed between October 25 and November 7, 2016.

The interviewer followed an interview guide developed with the cooperation of the AI/AN Summit Planning Committee, which asked demographic questions; about respondents’ confidence level that most activities outlined in the action plans developed during the summit will be achieved on a scale of very confident, confident, unconfident and very unconfident; whether the planned activities were being implemented as a group or by individual organizations; about their readiness level to implement the planned activities on a scale of not ready, getting ready, ready, currently implementing activities and maintaining activities; about the key successes and challenges; the kinds of partnerships developed resulting from the summit; and about any needed technical assistance to achieve the planned activities.

Two members of GW Cancer Center staff analyzed and drew themes from the qualitative data using QSR NVivo 11. Individually identifying information was removed as findings were summarized.

At least one person from each CDC region represented at the summit was interviewed (Figure 1).  There were also two stakeholders that may not directly be working on the action plans, who also provided updates. The majority of interviewees represented AI/AN programs, including the National Breast and Cervical Cancer Early Detection Programs, National Comprehensive Cancer Control Programs and Colorectal Cancer Control Programs. Some interviewees were also working on state programs and one identified as a coalition member. Other interviewees said they were state collaborators, received Health Resources and Services Administration and Good Health and Wellness funding, as well as sub-awards from state and regional entities. Further, 12 were program coordinators, managers or directors and one was a data manager. The interviewees were experienced, with 10 saying they have held the role for over two years, two between 12-24 months and one less than 12 months.

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Region E Updates

Region E (Fond du Lac Band and Lake Superior Chippewa) discussed and created their action plans as a group, but planned each activity to be implemented individually. One representative was interviewed. Areas of focus, planned action steps, stages of change, successes and challenges are summarized in Table 2. The interviewee was confident that the activities outlined during the summit will be achieved.

Area of Focus 1: Systems

The interviewee reported that they are getting ready to implement activities related to systems change, and have established baseline data and quality measures for American Indian Cancer Foundation’s (AICAF) tailored “I Quits” program, which will help demonstrate program effectiveness. A key activity of the “I Quits” program is to increase referrals to smoking cessation counselors. One challenge associated with this area of focus is the uncertainty of funding sustainability and changes in scope of work with the current grant period ending and the new CDC FOA being released.

Area of Focus 2: Collaboration

The interviewee reported that they are not ready to implement activities related to collaboration, but have started to communicate with department leaders in medical, community health services and administrative services to develop a cancer leadership team. One challenge associated with this area of focus is that several advisory committee leaders are retiring and new members will have to be educated and trained, which will be time– and resource-intensive. Further, as mentioned earlier, due to the uncertainty of funding sustainability and potential changes in scope of work with the current grant period ending and the new CDC FOA being released, efforts are being put on hold.

Area of Focus 3: Policy

The interviewee reported that they are maintaining and evaluating activities, and that there have been “highlight achievements” in policy. State Health Improvement Plan (SHIP) from Minnesota has enabled them to hire an additional smoking cessation counselor, who is working closely with the cancer program outreach worker on smoke-free and second-hand policy initiatives with ClearWay. Fond du Lac also passed a tribal ordinance to increase smoke-free zones around tribal office to 25 feet, except for casinos. The first floor of the Fond du Luth Casino has become smoke-free. They originally agreed to implement the policy for one year. However, after recognizing that the smoke-free policy had no negative financial impact, they have continued this policy, and have even started to promote the smoke-free first floor on their website as well as on major highways around Duluth.  Further, large public events such as powwows and community gatherings are assuming 100% smoke-free policies as standard of operations.

Partnerships

The interviewee did not report any new partnerships resulting from the summit, but said that the meeting was “so valuable,” as it offered an opportunity to come together and share information: “we could really see how much progress has been made. For those that were new, hopefully it gave them an understanding about what has transpired since the early 2000s when the majority of tribal programs had nothing… including no databases.”

Technical Assistance Suggestions and Other Comments

Fond du Lac works closely with and receives tailored technical assistance from AICF. The interviewee urged federal programs and funders to continue their work to understand “the sovereign nations and the huge variety” of populations, circumstances and needs.

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Region F Updates

Region F (Cherokee Nation and Kaw Nation) discussed and created their action plans as a group, but planned each activity to be implemented individually. One representative was interviewed. Areas of focus, planned action steps, stages of change, successes and challenges are summarized in Table 3. The interviewee was very confident that the activities outlined during the summit will be achieved.

Area of Focus 1: Policy and Health System

The interviewee reported that they have implemented and are now maintaining health system procedures and policies to increase screenings and decrease the no-show rates for colposcopies. However, getting patients into the clinics remains a challenge, because they are afraid of the screening procedure. In response, the interviewee reported that they are developing communication strategies to promote screenings. 

Area of Focus 2: Systems

The interviewee reported that it took 11 months to implement a new Electronic Medical Record (EMR) software that provides more accurate reports on cancer screening data (the implementation started before the summit). They are currently working to implement a reporting system that automatically generates and sends data to investigators. The interviewee reported that the period during which the new EMR was being installed was stressful for the clinics, and there are challenges associated with the reality that the EMR is primarily built for business purposes, and not necessarily to improve screening and patient care. However, the interviewee said there is wide organizational support among health administrators and tribal administrators, and cancer remains a priority topic and people are passionate about the work.

Area of Focus 3: Outreach, Communication and Messaging

                 The interviewee reported they are getting ready to implement planned activities around environmental change. The data from 2015 showed cancer mortality indicators continuing to rise: “We get a little discouraged with the outcomes data,” the interviewee said. They are coming to the realization that this trend stems from health behaviors that are influenced by the mostly rural environment, but “environmental changes and its impacts are slow to materialize in health outcomes.” For example, more needs to be done to decrease the sales of soda pop in grocery stores: “We feel like we’re spinning our wheels trying to get people into screening.”

Partnerships

The interviewee said that the summit provided the first opportunity to meet with the CDC program officer in person, and spending time with Melissa Jim and David Espey “was great.” The summit was especially meaningful in learning about the racial re-classifications in data.

Technical Assistance Questions and Other Comments

The interviewee suggested that CDC representatives look for opportunities to spend more time on the ground to get to know the community better, especially as the last site-visit was four years ago. The interviewee believes that if CDC were more familiar with the unique circumstances and needs of the program and population, they would be more flexible with funding allocation and understanding of tribal self-determination: “the cancer prevention model they preach does not fit all tribal organizations.”

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Region H Updates

Region H (Cheyenne River Sioux and Great Plains Tribal Chairmen’s Health Board) discussed and created their action plans as a group, but planned some activities to be implemented as a group and some individually. There were three interviews with four representatives (one joint interview). Areas of focus, planned action steps, stages of change, successes and challenges are summarized in Table 4. Two interviewees were confident and one was very confident that the activities outlined during the summit will be achieved.

Area of Focus 1: Systems

The stage of change for systems change activities varied across the three interviews, from “getting ready” to “maintaining activities.”

Cheyenne River Sioux is coordinating with the information technology (IT) department and confirmed that they have capabilities to install customized reminder systems, and will “turn it on” when they are ready. The interviewee was confident that the activities outlined during the summit will be achieved.

The Great Plains Tribal Chairmen’s Health Board also worked with the IT systems at the colorectal cancer facility by attending trainings and having discussions about the advantages of using reminder systems. Transitioning to a new system is taking longer than anticipated. The first phase is to get people educated about the system and the second phase is to scale up. The interviewees also spoke about installing provider-assessment feedback to evaluate effectiveness of the intervention in the next couple of years.

Area of Focus 2: Policy: Tobacco

The stage of change for tobacco policy activities varied across the three interviews, from “not ready” to “implementing activities.”

Cheyenne River Sioux is working with the Canli Coalition and the tribal council to introduce cigarette tax compacts and update the policy and ordinance to include e-cigarettes, while also continuing to promote quitlines. One interviewee was confident that that tax compact for e-cigarettes will pass, with the cooperation of Missouri Breaks Industries, an “Indian-owned medical firm.” There have also been educational sessions on e-cigarettes—for example, two speakers from universities came to the reservation to present on e-cigarettes.

Interviewees of Great Plains Tribal Chairmen’s Health Board report that they are working to raise awareness of the harms of e-cigarettes, but it may take longer than the 1-2 year time frame allotted in the action plan. The timeline may also depend on state-level policy changes: “if [Minnesota] moves in a positive direction, the tribes tend to move that way [… ] We’re not there yet.” Current state efforts are focused on raising the age of e-cigarette sales to 21. The Great Plains Tribal Chairmen’s Health Board also recently started to incorporate the 5 A’s of tobacco cessation in their services and trained approximately 300 people on state quitline and National Indian Network quitlines, which led to an increase in referrals from 19% to 49.5%. The comprehensive cancer control program is coordinating communication and education efforts with a tobacco health educator, who works under the CDC Good Health and Wellness program.

However, interviewees said that “policy change can be hard,” pointing to the example that Cheyenne River is the only tribal community in the region to go smoke-free and it took them five to seven years. They attribute Cheyenne River’s success to the Canli Coalition with multi-sectoral membership including the elderly, youth and other champions. Interviewees emphasized that tobacco policy is especially hard to pass in a region where there is a high prevalence of smoking, as it has a huge impact on tribal leadership that also often smokes, as well as tribal members.

Area of Focus 1: Environment: Physical Activity and Nutrition

The stage of change for environmental change for physical activity and nutrition varied across the three interviews, from “implementing” to “maintaining and evaluating activities.” 

Cheyenne River Sioux’s Youth Diabetes Program received the John Pipe Voices for Change Award for “outcomes achievement” from the American Diabetes Association in 2016 for the activities that include health fairs and powwows for adults and children, where they take their blood pressure and glucose levels and pass out health information materials. The interviewee said that their success is attributable to the staff that are able to leave their office and go into the communities to work with youth; a policy supported by their leader and funding mechanisms. They are also working with the Special Diabetes Program that organizes challenges: people weigh in at the beginning of the program and are challenged to increase physical activity, eat healthfully and lose weight. If people meet their goals, they have the chance to win mountain bikes. They also plan to organize an activity for mountain bike winners to “hit the trails”  this summer. The Tribal Health Department also offers a walking class on Monday, Wednesday and Friday mornings as part of physical activity-leave, which is paid-time off offered to employees to engage in physical activity.

Partnerships in Improving Community Health (PICH), a tribal advisory group, is working on environmental change efforts to improve physical activity levels. PICH adapted and implemented the PSE Community Health Assessment aNd Group Evaluation (CHANGE) tool from CDC and developed a community action plan to work on tobacco, nutrition and physical activity. There are challenges with building walking paths, as outlined in the action plan, due to limited funding.

Partnerships

Cheyenne River Sioux and Great Plains Tribal Chairmen’s Health Board collaborate often, as they are only 2.5 hours away from each other. For example, after the summit, members of the Cheyenne River Sioux went to Albuquerque to attend a leadership training organized by the Great Plains Tribal Chairmen’s Health Board, where they shared summit outcomes with 11 partners.

One interviewee from Cheyenne River Sioux said s/he did not know many other people at the summit, but said that it was “great getting to know various initiatives in the region,” CDC representatives and select CCCNP members.   S/he said it was a good opportunity to meet unfamiliar people from Great Plains Tribal Chairmen’s Health Board as well.

The interviewees from Great Plains Tribal Chairmen’s Health Board attended the meeting for AI/AN Colorectal Cancer Programs the day before the summit, where they met other tribal organizations that were previously funded and learned the keys to their success. The interviewees also said that they “learned a lot” from other comprehensive cancer control programs during the summit: “It was a way to strengthen and build across all tribes that were there—partnership and learning from each other.”

Technical Assistance Suggestions and Other Comments

Interviewees requested that CDC not wait another 10 years before convening another summit for AI/AN programs. They also requested that tribal programs receive more dedicated time at national cancer conferences to convene with one another and present their work. Further, they asked for CDC to consider dedicated funding to tribal programs to be earmarked to reduce competition between tribes and with states. One interviewee mentioned that the quarterly CDC tribal grantee updates are more interesting as there is more emphasis on tribal updates compared to CDC updates: “we can do them more frequently, even monthly, because that’s how we learn from each other.”

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Region I Updates

Region I (Hopi Tribe, Navajo Nation and Tohono O’Odham Nation) discussed and created their action plans as a group, but planned some activities to be implemented as a group and some individually. There were three interviews. Areas of focus, planned action steps, stages of change, successes and challenges are summarized in Table 5. All three interviewees were confident that the activities outlined during the summit will be achieved.

Area of Focus 1: Colorectal Cancer Screening

One interviewee said that they are “getting ready” and another said that they are “currently implementing activities” in this area of focus.

Tohono O’Odham Cancer Partnership is talking to state comprehensive cancer control program staff to talk about the health education efforts promoting Fecal Immunochemical Tests (FIT) for colorectal cancer screening.  Tohono O’Odham and comprehensive cancer control program staff met to exchange known best and promising practices and are working together to create an educational PowerPoint intended to be shown to community members.

Navajo Nation identified ownership and provided tribal language for educational materials and public service announcements (PSAs) on local radio stations about colorectal exams.

Hopi Tribe is working with the Indian Health Service (IHS) to provide patient navigation services for clients who need colorectal cancer screening. Patient Navigators speak to clients in their own language to help them overcome barriers to care. Hopi has identified courses that have a good reputation and have sent navigators to attend workshops in-person. One interviewee reported the challenges of dealing with conflicting recommendations for clinical breast exams between various authority organizations is confusing.

Area of Focus 2: Breast Cancer Screening in Navajo Nation

Interviewees said that they are ready for activities in this area of focus.

Navajo Nation clarified the Memorandum of Understanding (MOU) agreement on services that are to be provided from both tribal health services and IHS, and confirmed that the Government Performance and Results (GPRA) standards have been met. However, a potential challenge is that the new medical health facility CEO can change whether the MOU remains or make amendments or revisions.

Barriers to this work include time constraints and limited staff capacity. For example, Tohono O’Odham’s procedures and rules and regulations have changed in accordance with changes in their separate health department entity, causing priorities to compete for time.

Area of Focus 3: Breast Cancer Screening for the Hopi Community

Interviewees said that they are ready for activities in this area of focus.

Arizona’s comprehensive cancer control program is ready to review the MOU for Hopi’s breast cancer screening community and getting ready to share with Navajo Nation. The interviewee also mentioned that many health insurance plans in Arizona found the mortality data among minority populations compelling and agreed to cover mammograms starting at age 40, despite USPSTF recommendations.  However, there are challenges with health care coverage and the restriction CDC places on using funds to cover those who have private insurance. As many Hopis are employees of the tribal government that provides self-insurance programs, the breast cancer screening program cannot use CDC funds to pay for such services.

Further, the 10th annual Tribal Collaborative conference held in November 2016 featured a breast surgeon that spoke on the importance of listening to patients and their family history.

Partnerships

One interviewee mentioned that the summit spurred partnership with the National Native Network that sent their staff to visit the Hopi reservation in September 2016.  The summit helped to reinforce the partnership and kinship of Indian Country and “that we can be a resource for one another.”

One interviewee said that regional efforts were already well-integrated and partnership and collaboration were strong, so the summit did not spark new partnerships, but “we all loved the conference.” The Tribal Collaborative involves every member of the program, including state, San Carlos Apache Tribe, Tohono O’Odham Nation, Hopi, Navajo Nation and other stakeholders such as the American Cancer Society Cancer Action Network. They hold annual meetings to continue the collaborative work.

Technical Assistance Suggestions and Other Comments

One interviewee requested technical assistance on evaluation and assessment of programs to demonstrate effectiveness and secure future funding.

One interviewee mentioned that the federal government needs to provide support to programs and funding opportunities that demonstrate respect for traditional ways and historical trauma, as not every tribe is on the same trajectory for health improvement and systems advancement. Further, s/he suggested that CDC continue to foster and broker partnerships between grantees and CCCNP organizations.

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Region J-1 Updates

Region J-1 (Southeast Alaska Regional Health Consortium [SEARHC], Alaska Native Tribal Health Consortium, Arctic Slope, Southcentral Foundation and Yukon-Kuskokwim Health Corporation) discussed and created their action plans as a group, but planned some activities to be implemented as a group and some individually. There were two interviews with three representatives (one joint interview). Areas of focus, planned action steps, stages of change, successes and challenges are summarized in Table 6. All interviewees were confident that the activities outlined during the summit will be achieved.

Area of Focus 1: Access to Services

One interviewee said they are getting ready and another said they are currently implementing the planned activities in this area of focus.

SEARHC is working on developing a wellness committee that is recognized by the consortium’s management and approved the Well-Integrated Screening and Evaluation for Women Across the Nation (WISEWOMEN) Women’s Health Program that allows the 800-900 consortium employees discounts to the swimming pool (45% of SEARHC employees are Alaska Native or Native American). This is a success for increasing access to wellness facilities, as there are not many other options for physical activity, especially during the winter. SEARHC also presented the recommendation for employees to get time off for colonoscopies to the executive management committee, and is currently undergoing review. The response has been slow, as SEARHC already offers a generous paid-time-off policy. Further, due to recent employee turnover, the wellness committee has been inactive; however, the interviewee expected it to revitalize in 2017.

Alaska’s comprehensive cancer control program is a statewide organization has offices across Alaska, and some already have employee wellness programs including time-off for cancer screenings, and others are currently discussing and organizing efforts. The interviewee also mentioned that with shrinking resources and high turnover, persuading more offices to invest in employee wellness is challenging.

Area of Focus 2: Recruitment and Retention

One interviewee said they are getting ready and another said they are currently implementing the planned activities in this area of focus. 

SEARHC has partnered with the state breast and cervical cancer early detection program to train staff on patient navigation using the University of Alaska’s online courses that are currently being developed. SEARHC is also working with medical, nurse practitioner and physician assistant students doing monthly rotations, with the goal of showcasing the region and compelling them to return to provide services. Further, SEARHC leveraged its close partnership with the Alaska Native Medical Center to have an oncologist lead a grand rounds with providers in August 2016. The oncologists presented information to the providers and organized a support group retreat for people living with cancer. The SEARHC population is too small to keep an oncologist on staff and clinicians take on a wider range of responsibilities, which makes such exposure to cancer specialists important for clinicians in the region. Overall, high turnover in rural areas and unique regional geography remain a challenge.

Alaska’s comprehensive cancer control program also added increased provider education to their work plan.

Area of Focus 3: Continuity of Services; Linking Prevention to Care

One interviewee said they are currently implementing and another said they are maintaining and evaluating the planned activities in this area of focus. 

Alaska’s comprehensive cancer control program reported that they have been most successful at identifying and building relationships with unique partners, including Walgreens, community health centers and parish nurses. They conducted key informant interviews  with these partners during summer 2016 to collect process evaluation data on what did and did not work, and are currently writing a work plan based on the feedback. For example, they found that two mobile mammography programs were not coordinating with each other, but “that bridge is being built.” Further, they found that, according to the Young Women’s Christian Association (YWCA), that women are getting screenings locally, which contradicts the assumption that many people go to Anchorage. In response, the comprehensive cancer control program is working to accept local programs and educate local providers to leverage their screening services. The comprehensive cancer control program also partnered with the breast and cervical cancer prevention program and leveraged their partners and funding to conduct outreach to communities, food banks, churches, people with lower health literacy and English as a second language communities.

Partnerships

One interviewee said that the summit “helped solidify the region as a group and helped reconnect some group members that had fallen away… Really great outcome,” and that in-person meetings are advantageous for building relationships compared to conference calls and electronic communication.

Another interviewee said that the summit was useful to know future areas of priority and available resources for Alaska Natives: “I remember taking notes during presentations and thinking: ‘I’m going to follow up with them.’ Liver cancer, for example. I appreciate the ability to network with these experts.” The interviewee reported being mostly familiar with everyone in attendance, “which is not a bad thing. It’s good to see some continuity,” but would have liked to have seen more people from IHS.

Technical Assistance Suggestions and Other Comments

Both interviewees mentioned that resources on employee wellness would be helpful to make the quick and convincing case to employers by presenting the costs and benefits. This resource might include how to encourage employees to support needed paid-time off to support the 80% by 2018 colorectal cancer screening goal. It might also include newsletters and templates that the human resources department or the wellness committees could reuse for their employees.

Another suggestion was for more success stories for health care professional retention and increased access to services, as well as examples of successful workplace health policies.

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Region J-2 Updates

Region J-2 (Native American Rehabilitation Association, South Puget Intertribal Planning Agency, Northwest Portland Area Indian Health Board and California Rural Indian Health Board) discussed and created their action plans as a group, but planned some activities to be implemented as a group and some individually. There was one interview. Areas of focus, planned action steps, stages of change, successes and challenges are summarized in Table 7. The interviewee was confident that the activities outlined during the summit will be achieved.

Area of Focus 1: Tobacco Cessation for Survivors

The interviewee reported they are not ready to implement the planned activities in this area of focus, but mentioned that they are working on developing smoking cessation resources in general. Tobacco cessation specifically for cancer survivors is not their first priority, given the high rates of tobacco use in the community in general (approximately 40%) and relatively low numbers of cancer survivors (approximately 300 new diagnoses in the whole region).  Additionally, it is difficult to plan programs and evaluate changes, as cancer centers do not collect data on smoking among cancer survivors and the data that Centers for Medicare and Medicaid services collect with the lung cancer screening registry is not publicly available.

Area of Focus 2: Survivor Groups

The interviewee reported they are getting ready to implement the planned activities in this area of focus and have been connecting tribal programs to resources and survivorship programs in cancer centers.

Area of Focus 1: HPV Vaccinations

The interviewee mentioned that they have worked on mini-projects funded by the Cancer Prevention and Control Research Network to conduct focus groups with community members on HPV vaccination interventions at pharmacies. Staffing changes at partner organizations and pharmacies and limited time have been a challenge to administer the vaccines.

Partnerships

The interviewee said that the summit allowed for in-depth conversations with some attendees, especially CCCNP members. For example, a conversation initiated about a paper from the National Academy of Medicine that reported data on the impact of insurance outcomes among native patients, which conflicted with other data sources, spurred further dialogue.

Technical Assistance Suggestions and Other Comments

The interviewee said that additional funding for tobacco cessation resources for tribes would be beneficial and for CDC to promote clinical cessation interventions and not quitlines to reach cancer survivors, pregnant women and tribal members.

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Other Stakeholder Updates

Intertribal Council of Michigan and State of Michigan Partner

Two stakeholders who attended the summit also provided updates and comments during their interviews.

Updates:

  • Formed cancer screening and prevention workgroup, which has been successful with addressing infant health, and are seeking to extend the success to cancer and maternal health issues.
  • Created an action plan to provide training and education to non-traditional providers such as home-visitors for mothers to talk about cancer screening. This included a session on colorectal, breast and cervical cancer screenings.
  • Organized dance shawl workshop in November 2016, where women wear shawls that represent meaning and serve as a catalyst for community members to start talking about health topics and disparities. They will promote breastfeeding, screening and mammograms as methods of prevention.
  • Planning to host the first-ever Smoking Cessation and Reduction in Pregnancy Training (SCRIPT) in February 2017 in Michigan for health care providers and educators who provide direct services with families, especially pre- and post-natal smoking cessation. SCRIPT is a train-the-trainer model with a focus on sustaining smoking cessation postpartum.

Comments:

  • It is important to include breastfeeding as a cancer prevention method in technical assistance materials and resources.
  • More resources and capacity to talk about LGBTQ and two-spirit health would be meaningful.
  • The summit was a good way to promote efforts in cancer data linkages to correct misclassifications for AI/AN populations.​

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Methods

In response to feedback from AI/AN Summit Planning Committee members that it would be beneficial to also conduct follow-up evaluation with CCCNP stakeholders, GW Cancer Center created a short survey, which was open for over two weeks in November and December 2016. The demographic information of six respondents are summarized in Table 7. The six respondents participated in most of the workgroups, whether actively or passively, and were from CDC, National Cancer Institute, GW Cancer Center and the American College of Surgeons on Cancer. The survey respondents identified technical assistance providers as well as representatives of the AI/AN National Breast and Cervical Cancer Early Detection Programs, AI/AN Colorectal Cancer Control Programs and/or State National Comprehensive Cancer Control Programs. Three were program officers, two were program coordinators, managers or directors and one was an epidemiologist, and all had held their positions for more than two years.

Updates

Increased Knowledge

Of the six respondents, five indicated that they learned something new about the tribes from the summit, including about the uniqueness of the AI/AN community as a whole, issues most important to the tribes and AI/AN community and important differences from the rest of the U.S. population (one strongly disagreed). These takeaways highlight the need to focus research, programming, technical assistance and funding that are tailored to the community. Respondents specified their key takeaways as follows:

  • Highest risks in Indian Country are so different from what CDC funds.”
  • “I learned more about how they operationalize colorectal cancer screening, particularly in the Northern Plains and the Southwest.”
  • “The importance of advocacy to gain important and relevant data for cancer control planning and surveillance.“
  • “The critical importance of issues [such as] tobacco cessation [and] availability of healthy food.”

Intention to Use Newly Acquired Knowledge

Four survey respondents indicated that knowledge gained during the summit had improved his/her relationship with the tribes as follows:

  • The summit “increased awareness of the importance of inclusion of the tribes in the provision of [technical assistance] from a national perspective.”
  • Since the summit, “I have taken an active role in brokering the relationship between [my organization] and tribal representatives to get useful data into the hands of tribes and make sure tribal concerns are included in strategic planning. [I have] been working to increase research training funding for AI/AN researchers.”
  • The summit helped them understand “the context” in which they work.
  • The summit has prompted an effort to look “at cancer from a primary prevention level: what preventative measures can prevent multiple cancer types?”

Successes of the Summit

Four respondents said that the collaborative workgroup activities were the keys to the summit’s success, and opportunities for attendees to interact, provide input, form relationships and build trust. Two respondents attributed the summit’s success to the authentic speakers and attendees, and one pointed to the “packed” agenda and wealth of relevant and interesting information provided.

Improvements for Future Summits

Four respondents strongly agreed that the summit should be repeated again in the future. One agreed and another strongly disagreed. Three survey respondents suggested that follow-up technical assistance or scheduled meetings may be ways to ensure the delivery of specific, measurable, achievable, realistic and time-bound (SMARTer) action plans from future summits. One respondent also suggested that there be discussion about baseline targets for objectives and assistance finding the appropriate data.

Summit Evaluation

Three respondents strongly agreed and three agreed that the evaluation of the summit was useful, mostly because it simply provided documentation and data on inputs, comments and feedback from summit attendees. One specified that having participants “write comments on large sheets of paper” for qualitative feedback was particularly helpful, and another appreciated that specific time was allocated to evaluation during the summit, rather than at the end of the summit.

Planned Technical Assistance and Support for AI/AN Tribes and Grantees

Two respondents specified their current efforts to acquire more funding for tribal programs: one specified that a small CDC team has developed funding to create a tribal clinic assessment tool for 2017/2018 and are convening regularly to discuss the plan. Further, one respondent specified that there are ongoing efforts to connect tribal programs to CCCNP contacts that can share experiences and best practices. Finally, one respondent is planning for more tribal involvement in the Cancer Moonshot initiative.

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The 2016 CDC Cancer Summit provided a much-needed opportunity for AI/AN grantees and stakeholders to gather. The first objective of the summit to “provide a forum for open dialogue about topics of interest to all CDC DCPC tribal grantees” was met: whether attendees renewed existing relationships or formed new partnerships, attendees overwhelmingly reported that they learned from each other. The second objective of the summit, to “provide an opportunity… to work together in teams to collaboratively identify priority areas and strategies for American Indian and Alaska Native communities,” was also met with the creation of action plans during the summit in April 2016. Six months later, this report reveals steady progress and some key early successes. Although notable barriers to action plan implementation persist, from program and health care workforce retention and funding sustainability to the time-consuming nature of implementing policy, systems and environmental strategies, programs have continued to work on priority cancer topics including tobacco cessation, HPV vaccination and colorectal cancer screening.

AI/AN grantees and stakeholders continue to request technical assistance with program evaluation. Topics of interest include workforce retention; workplace wellness frameworks and policies; and LGBTQ and two spirit health. Those interviewed also frequently cited the need for funding mechanisms to be sensitive to the needs, circumstances, traditions and settings of AI/AN communities. They further emphasized the uniqueness of each tribe and the need to adjust funding opportunities and program expectations accordingly.

The summit also proved beneficial to CCCNP organizations. Many reported having learned something new and become more aware of and sensitive to the needs of tribal grantees and the communities they serve. CCCNP attendees reported that they have already started to work within their respective organizations to improve opportunities and resources made available to AI/AN grantees.

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The CDC provides information on disparities in “Cancer Among American Indians and Alaska Natives.” For additional resources, visit GW Cancer Center’s Cancer Control Technical Assistance Portal’s (TAP) searchable Resource Repository of tools and resources, including reports, toolkits, fact sheets, infographics and trainings. New resources are added regularly, and readers are also encouraged to submit resources to be added to the repository.

GENERAL:

American Indian Cancer Foundation (AICAF) lists resources derived from the Tribal Health Equity and Healthy Native Foods project, among others.

Comprehensive Cancer Control TAP “is a centralized website the pulls together existing and new technical assistance.”

Intercultural Cancer Council and Caucus (ICC) Library lists fact sheets, publications and reports on cancer disparities.

Northwest Portland Area Indian Health Board (NPAIHB) Resource Library collate resources on tribal comprehensive cancer control efforts.

National Association of Chronic Disease Directors (NACDD) Cancer Council “connects together all cancer program staff for knowledge sharing, brainstorming, problem solving and best practice dissemination pertaining to cancer control and prevention.”

Native American Cancer Research Corporation (NACR) lists NACR-developed resources including booklets, videos and fact sheets.

EVALUATION:

CDC’s Comprehensive Cancer Control Branch Program Evaluation Toolkit “is a ‘how to’ guide for planning and implementing evaluation activities in cancer prevention and control programs.”

Gateway to Health Communication & Social Marketing Practice: Research & Evaluation “provides resources to help build your health communication or social marketing campaigns and programs.”

Implementing, Evaluating and Improving Your Communication Campaigns is a summary of the Ask-the-Expert session with Dr. Shawnika Hull from George Washington University’s Milken Institute School of Public Health, who shared tips and directions for evaluating communication programs.

National Colorectal Cancer Roundtable (NCCRT) Evaluation Toolkit provides “information and tools to help organizations or groups evaluate their efforts, measure outcomes, report their results and improve their programs over time.”

GRANTS AND FUNDING:

Grants and Funding: Diversifying and Securing Resources for Cancer Control is a webinar recording featuring experts from comprehensive cancer control consortiums and coalitions.

Tribal Grant Writing Training: Enhancement, Evaluation and Promotion is “designed, specifically for tribes and tribal organizations, to increase knowledge on grant proposal development, writing a good abstract and grant evaluation.”

LGBT & TWO-SPIRIT HEALTH:

Center for American Progress provides an overview of Two-Spirit health and actions to support Two-Spirit/Native American LGBT people.

Tribal Equity Toolkit Tribal Resolutions and Codes to Support Two Spirit & LGBT Justice in Indian Country facilitates the development of tribal laws that ensure that Two Spirit/LGBT people have the same access and opportunities as other community members.

SMOKING CESSATION FOR SURVIVORS:

National Native Network Resource Library features resources that “serves to decrease commercial tobacco use and cancer health disparities among members of American Indian and Alaska Native Tribes across North America.”

Tobacco Cessation and Control Resources includes “effective resources for oncology care providers and patients.”

WORKPLACE WELLNESS:

Engaging Businesses in Comprehensive Cancer Control Coalitions: The Value Proposition for Comprehensive Cancer Control supports coalitions in analyzing their current membership and identifying and engaging new members from the business community

Making the Business Case: How Engaging Employees in Preventing Care Can Reduce Healthcare Costs illustrates to employers how cancer costs burden businesses and how companies can start offering preventive and cancer-screening services.

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Updated February 2017