Indigenizing and Ruralizing NCI Screen to Save Program: Resources, Optimizing Outreach, Teaching, Science (ROOTS).

Colorectal cancer (CRC) is a complex health disparity in many Indigenous and rural populations. While it affects anyone regardless of race, age, gender, or other common differences among people, Indigenous and rural populations are at a higher risk of dying from colorectal cancer. An NCI Screen to Save (S2S) program was culturally tailored to promote awareness and knowledge of colorectal cancer and screening in both Indigenous and rural communities across a sector in Northeastern USA. Indigenous and rural community outreach teams at an NCI-designated cancer center partnered with a community advisory board to provide an indigenized/ruralized version of the NCI Screen to Save program delivered to both Indigenous and rural/suburban communities. In total, n = 79 pre/post surveys were obtained from n = 82 participants, who had an average age of 49 years. Findings demonstrated that Indigenous/rural participants in both off-territory/non-reservation communities and a tribal community that received a culturally tailored version of NCI's S2S program were able to identify both smoking and tobacco use along with lack of physical activity as risk factors for colorectal cancer. Post-intervention, participants reported being more likely to increase physical activity. Most importantly, participants said they would be more likely to be screened for colorectal cancer along with their family and friends based on their cancer screening experiences. Culturally tailored CRC messaging is an effective means for increasing screening intentions and decreasing cancer health disparities among both indigenous and rural populations. Future research should include the relationship of diet to obesity-related cancers, greater integration of Indigenous-rural patient navigation programs, creation of more information on genetic screening, and quality improvement to service translational science initiatives.

Food insecurity and its consequences in indigenous children and youth in Canada.

Food insecurity (FI) is at a crisis level in some Indigenous communities and impacts many of the half million First Nations Inuit and Métis (FNIM) children across Canada, particularly in isolated northern communities. This can lead to malnutrition and can have significant impacts on the physical, intellectual, emotional and social development of a child, often with lasting effects across the life course. This is a narrative review article with extensive search of the medical literature with input from the FNIM National organizations. The primary cause of FI is an imbalance between the high price of food relative to household income, where poverty is a driving factor. The cost and lack of availability to healthy foods has resulted in a transition to unhealthy market foods. Food security programs need to be prioritized, multi-faceted and multi-tiered within a framework of food sovereignty. Translational science, research, to practice is also important. The use of successful Indigenous based models of FI, towards food sovereignty using self-determination, Indigenous Knowledge, strength-based models, and ancestral sustainability are critical. Continued community-based evaluation of FI towards sustainable healthy food programs are important for communities to initiate track, evaluate, and grow robust community-based programs to counter-balance FI. Continued scientific research in the fields of FI, food sovereignty, and their relationship to co-occurring conditions related to healthy eating and beverage consumption are vastly important to the health of Indigenous Peoples. These are all part of many Indigenous connection to the earth, through food source, the maintenance of health through ancestral ways of living, set in the premise of looking forward multiple generations towards the continued resiliency through food, diet, relationship, and sovereignty. Food Security is a human right and needs to be urgently addressed for Indigenous children in Canada.

Empowering Equitable Data Use Partnerships and Indigenous Data Sovereignties Amid Pandemic Genomics.

The COVID-19 pandemic has inequitably impacted Indigenous communities in the United States. In this emergency state that highlighted existing inadequacies in US government and tribal public health infrastructures, many tribal nations contracted with commercial entities and other organization types to conduct rapid diagnostic and antibody testing, often based on proprietary technologies specific to the novel pathogen. They also partnered with public-private enterprises on clinical trials to further the development of vaccines. Indigenous people contributed biological samples for assessment and, in many cases, broadly consented for indefinite use for future genomics research. A concern is that the need for crisis aid may have placed Indigenous communities in a position to forego critical review of data use agreements by tribal research governances. In effect, tribal nations were placed in the unenviable position of trading short-term public health assistance for long-term, unrestricted access to Indigenous genomes that may disempower future tribal sovereignties over community members' data. Diagnostic testing, specimen collection, and vaccine research is ongoing; thus, our aim is to outline pathways to trust that center current and future equitable relationship-building between tribal entities and public-private interests. These pathways can be utilized to increase Indigenous communities' trust of external partners and share understanding of expectations for and execution of data protections. We discuss how to navigate genomic-based data use agreements in the context of pathogen genomics. While we focus on US tribal nations, Indigenous genomic data sovereignties relate to global Indigenous nations regardless of colonial government recognition.

Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data.

Addressing Indigenous rights and interests in genetic resources has become increasingly challenging in an open science environment that promotes unrestricted access to genomic data. Although Indigenous experiences with genetic research have been shaped by a series of negative interactions, there is increasing recognition that equitable benefits can only be realized through greater participation of Indigenous communities. Issues of trust, accountability and equity underpin Indigenous critiques of genetic research and the sharing of genomic data. This Perspectives article highlights identified issues for Indigenous communities around the sharing of genomic data and suggests principles and actions that genomic researchers can adopt to recognize community rights and interests in data.

Factors associated with biomedical research participation within community-based samples across 3 National Cancer Institute-designated cancer centers.

BACKGROUND: Engaging diverse populations in biomedical research, including biospecimen donation, remains a national challenge. This study examined factors associated with an invitation to participate in biomedical research, intent to participate in biomedical research in the future, and participation in biomedical research and biospecimen donation among a diverse, multilingual, community-based sample across 3 distinct geographic areas. METHODS: Three National Cancer Institute-designated cancer centers engaged in community partnerships to develop and implement population health assessments, reaching a convenience sample of 4343 participants spanning their respective catchment areas. Data harmonization, multiple imputation, and multivariable logistic modeling were used. RESULTS: African Americans, Hispanic/Latinos, and other racial minority groups were more likely to be offered opportunities to participate in biomedical research compared to whites. Access to care, history of cancer, educational level, survey language, nativity, and rural residence also influenced opportunity, intent, and actual participation in biomedical research. CONCLUSIONS: Traditionally underserved racial and ethnic groups reported heightened opportunity and interest in participating in biomedical research. Well-established community partnerships and long-standing community engagement around biomedical research led to a diverse sample being reached at each site and may in part explain the current study findings. However, this study illustrates an ongoing need to establish trust and diversify biomedical research participation through innovative and tailored approaches. National Cancer Institute-designated cancer centers have the potential to increase opportunities for diverse participation in biomedical research through community partnerships and engagement. Additional work remains to identify and address system-level and individual-level barriers to participation in both clinical trials and biospecimen donation for research.

Improving Research Literacy in Diverse Minority Populations with a Novel Communication Tool.

Racial/ethnic minorities are underrepresented in clinical research in the USA for multifarious reasons, including barriers to effective communication between researchers and potential research participants. To address the communication barriers between researchers and potential participants, we developed a Research Literacy Support (RLS) tool. The focus of this report is to present findings from the second and third phases of development that refined and assessed usability of the RLS tool. We utilized a mixed-methods approach that entailed iterative cognitive testing with participants (N = 52) from diverse racial/ethnic backgrounds and interviews with clinical research recruiters (N = 20) to modify and refine the design and content of the RLS tool (phase 2). This was followed by assessment of the usability of the RLS tool by 100 participants (phase 3). During phase 2, participants provided feedback about layout, word choice, and comprehension of the tool. In phase 3, participants recognized that they had gained knowledge about clinical research from the RLS tool, although they still had a substantial learning gap after using the tool, indicating an opportunity for further refinement. The RLS tool may help advance health equity by addressing communication barriers that may impede minority participation in clinical research.

Views on clinical trial recruitment, biospecimen collection, and cancer research: population science from landscapes of the Haudenosaunee (People of the Longhouse).

Biomedical research in culturally distinct communities is often a challenge. Potential barriers to participation occur because science is presented in a format that lacks cultural acknowledgement. Investigations may also fail to showcase beneficial relevance to the communities or include them in true partnership. The history of biomedical research within Native American societies has been complicated by these issues. Historical trauma among many Native groups sometimes transcends into contemporary challenges in both recruitment to and participation particularly in biobanking research. The participants for this study included members of the Haudenosaunee, the People of the Longhouse. Native Americans, including the Haudenosaunee, endure some of the worst health disparities in the country. These include high rates of cancer, obesity, and diabetes which may be linked at least partially to genetic predisposition. Results from a Haudenosaunee urban population shared response on ways to improve recruitment strategies for biospecimen, cancer, and other health-related clinical trials. Mixed methods approaches were used, and community responses indicated the importance of creating trust through respectful partnership; promoting culturally appropriate recruitment materials; the need for a greater understanding of consenting and signature processes; the necessity for concise summary sheets; and a desire to have information that community member understand. Discussion items also include international Indigenous perspectives to biobanking and genetic-related health disparity research.

Mortality disparities: A comparison with the Haudenosaunee in New York State.

Identifying health status and disparities for Indigenous populations is the first logical step toward better health. We compare the mortality profile of the American Indian and Alaska Native (AI/AN) population with that of non-Hispanic whites in the Haudenosaunee Nations in New York State, the Indian Health Service (IHS) East region (Nashville Area) and the United States. Data from the linkage of IHS registration records with decedents from the National Death Index (1990-2009) were used to identify AI/AN deaths misclassified as non-AI/AN. Analyses were limited to persons of non-Hispanic origin. We analyzed trends for 1990-2009 and compared AI/AN and white persons in the Haudenosaunee Nations in New York State, IHS East region and the United States. All-cause death rates over the past two decades for Haudenosaunee men declined at a greater percentage per year than for AI/AN men in the East region and United States. This decrease was not observed for Haudenosaunee women with all-cause death rates appearing to be stable over the past two decades. Haudenosaunee all-cause death rates were 16% greater than that for whites in the Haudenosaunee Nations. The most prominent disparities between Haudenosaunee and whites are concentrated in the 25-44 year age group (Risk Ratio=1.85). Chronic liver disease, diabetes, unintentional injury, and kidney disease death rates were higher in Haudenosaunee than in whites in the Haudenosaunee Nations. The Haudenosaunee cancer death rate (180.8 per 100,000) was higher than that reported for AI/AN in the East (161.5 per 100,000).Haudenosaunee experienced higher rates for the majority of the leading causes of death than East AI/AN. These results highlight the importance of Haudenosaunee-specific data to target prevention efforts to address health disparities and inequalities in health.

Developing an obesity-cancer intervention for workplaces: Indigenous, Native American, Maori and other minority occupational settings.

There is growing evidence for links between obesity and certain types of cancer. Studies done within Native American, Maori, and other Indigenous populations suggest the need to promote healthier lifestyles, including the maintenance of optimal body weight through nutrition and physical activity, to lower the risk factors of obesity-related cancers. What is missing is a program that combines culturally attuned workplace interventions that deal with obesity reduction as it relates to cancer prevention. The main purpose of this project was to discuss the process of developing an employee assistance program module to reduce the risk for obesity-related cancers. Expert curriculum developers specialising in workplace disease management assisted with the creation of a unique obesity and cancer prevention program. Several national leaders in Indigenous and minority health were consulted for feedback. The completed intervention included a six-session model with cultural features wrapped around topics of obesity-related cancer warning signs, diet and physical activity guidance, stress management, goal-setting, and resource linkage. A Native American workplace was selected for feasibility and pilot testing. Preliminary results are also discussed. Ultimately, this paper presents a novel intervention approach to address health issues for Native Americans, with indicators for use in other Indigenous populations globally.

Chapter 13. Using narrative therapy with Native American recreational tobacco users.

This article describes a technique for helping recreational tobacco-using Native American clients change their smoking lifestyle. The technique is based in social work practice with a specific focus on the use of narrative therapy. The foundation of narrative therapy can be used across ethnicities for smoking-related issues. Finally, we propose the use of a clinical instrument, called the Success Journal, for practitioner use.