FormalPara Key Points

  • Cross collaboration between clinicians and community organizations is essential for cancer education and screening.

  • Successful patient navigation includes working with sovereign Native Nations, not-for-profits serving the community, grassroots organizations, and human/health service providers adjacent to Native Nations.

  • The Two-Row philosophy is a framework other Indigenous communities may benefit from.

Indigenous peoples experience higher cancer disparities and mortality rates due to a variety of preventable cancers [1, 2]. However, narratives of resilience are starting to emerge that balance out the cancer journey. This is exemplified by Indigenous women who have experienced cancer, who share strength stories by reflecting on their own personal growth in response to having cancer, and who assist others facing their own cancer journeys [3]. Cancer detection, services, and outcomes are influenced by geographic location, availability, proximity, and access to health centers and cancer health services. A cancer diagnosis is both life changing and intimidating [4, 5].

Indigenous patient navigators provide many unique services to community members undergoing cancer treatment. These include but are not limited to cancer education, cancer screening scheduling, appointment reminders, health literacy, and in-person appointment support. Patient navigator roles and training differ by site and program specifics. This level of complex relationship building requires a team that can provide comprehensive, quality cancer care and provide support that incorporates cultural norms and beliefs. It also requires collaborative efforts between healthcare systems that border reservations and urban areas to capture Indigenous populations on and off sovereign land.

The Two-Row framework respects different cultures while striving for the same goal of peace and harmony. It is reflected in the patient navigation program by having two arms or two vessels, Indigenous and rural communities, with the same goal of reducing the cancer burdens in these areas.

Patient navigators are an essential component of community-based cancer screening and of cancer patients’ recovery, strength, and healing. Key components of successful navigation include trust in healthcare systems, community integration of navigation programs into current health systems on sovereign land, communication between Indigenous Nations and urban centers, and familiarity with Indigenous knowledge, traditional medicines, ceremonies, and cultural protocols through the cancer journey. Indigenous cancer- and health-focused patient navigators are an integral part of saving lives as they provide education, appointment reminders, support, resources, and a familiar face to those who may hesitate to attend cancer screenings, cancer education, or cancer treatment. They are resiliency leaders in cancer healthcare and are integral to preventive medicine [6].

Two-Row Wampum: A Parallel for Collaborating in Different Health Systems

The Two-Row Wampum Agreement was a 1613 agreement between the Haudenosaunee (Iroquois) and representatives of the Dutch government, in what is now New York State. The Wampum consists of two purple rows or lines representing two vessels traveling in parallel along the river of life. These two rows never intersect and are surrounded by white wampum shells, which represent the two parties to the agreement traveling in peace and friendship without mutual interference. The Two-Row Wampum framed a process of nation-to-nation governance, demonstrating how multiple nations can work side-by-side while respecting each other’s governance and ways of life by avoiding navigating into the other’s path. This wampum was a contract upon which a treaty was founded, and it served as guide to peaceful, respectful, and friendly collaboration. The agreement also showcased sovereignty and respect between cultures, ways of life, languages, and coexisting governance [7].

In a recent health initiative implemented in the Haudenosaunee landscapes throughout New York State and primarily in Western New York, the Two-Row philosophy was woven into a cancer-focused quality improvement project, “Two-Row Collaboration: Indian Health Service, Rural Partnerships, and the Cancer Care Continuum,” that collaborated with health systems on Indigenous sovereign land, Indigenous community health programs, Indigenous not-for-profit organizations, grassroots organizations, and health organizations in neighboring Haudenosaunee territories. A collective review of successes and gaps in service related to the cancer-care continuum was formalized into a plan of action.

UN, US Treaty, and Trust Responsibilities: Indigenous Health Programs

Wampum agreements were interwoven with treaties [8], which are supreme laws of the land between Indigenous Nations and the US government. Many of the first wampum agreements and treaties were between the United States and the Haudenosaunee Nations. Part of Article VI of the 1794 Treaty of Canandaigua states, “Now that provision sets aside money to be used annually to purchase goods and to compensate artificers, who shall reside with or near them, and be employed for their benefit.” Venables [9, 10] suggests that provision and obligation extend to Haudenosaunee education, social welfare, and health, notwithstanding any financial limitation. Furthermore, the United States acknowledges that its trust obligations toward American Indian governments and peoples extends to healthcare (e.g., health service evaluation, quality improvement) in both the Snyder Act (25 USC 13) [11] and the Indian Health Care Improvement Act (25 USC 1602) [12]. Combined, these form part of government-to-government responsibilities to Indigenous healthcare programming, including cancer-care programming and patient navigation. They coincide, at the international level, with the United Nations’ positioning on the health rights of Indigenous peoples.

Quality Improvement, Service, and Bidirectional Modeling

The project “Two-Row Collaboration: Indian Health Service, Rural Partnerships, and the Cancer Care Continuum” conducted multiple roundtable discussions on sovereign Indigenous lands in New York State, Ontario and Quebec (Canada), and neighboring rural communities. Quality improvement findings documented ways of improving culturally driven cancer prevention and cancer screening services, with specific needs in patient navigation focused on all aspects of the cancer-care continuum. That includes education, screening, diagnosis, treatment, and survivorship. The results of this project are jointly informed by cancer health disparities specific to the Haudenosaunee confederacy, made up of ancestrally related Indigenous Nations. The project led to the creation of a multi-area Indigenous patient navigation program founded on the principles of the Two-Row Wampum. This includes respectfully implementing sovereign understanding across multiple health delivery systems and community organizations.

The emerging service paired patient navigators to practice in community-based settings on Indigenous territories and to geographically matched off-territory healthcare systems. These teams of Indigenous navigators and off-territory navigators provided in-person and on-site navigation with specific attention toward co-occurring conditions including cancer, obesity, and Type 2 diabetes. The navigation focused on prevention, screening, treatment, education, palliative care, and survivorship. Navigators were embedded in community spaces with rotations in a cancer center to cover in-hospital concerns. Navigators were also drawn from local Indigenous and rural communities to honor community knowledge and provide employment opportunities. Lastly, local and regional mobile screening efforts were coupled with virtual navigation to ensure robust integration.

Quality improvement initiatives to translate findings into service delivery lay the foundation for bidirectional networks to support navigation services and collective service programs working with and for Indigenous communities and adjacent safety-net providers across the cancer-care continuum. Bidirectional sharing between health systems identifies existing community resources and addresses gaps in care to streamline cancer screening, information, and treatment processes, making navigation a crucial and life-saving part of the process.

Health Sovereignty in Patient Navigation

Indigenous peoples have the right to self-determination, sovereignty, and treaty. According to the American Indian Law Alliance, a non-governmental organization with consultative status on the United Nations Economic and Social Council [13], many Indigenous Nations continue to operate under their own laws and traditional governance from the perspective or mindset of healthy generations. This right to self-determination is affirmed in Article 4 of the United Nations Declaration on the Rights of Indigenous Peoples.

In the realm of cancer care, Indigenous governments have the sovereign right to prioritize and implement health policies, including initiatives such as cancer patient navigation incorporating implementation, collaboration, medical billing, payment, and reimbursement structures [14].

Institutions that co-create strategic plans to work with Indigenous Nations in and around their geographic service area via affiliated offices and networks create sovereign frameworks for sustainable change [15]. Part of these responsibilities can be through service contracts or cancer-specific memorandums of understanding that honor sovereign leadership and direction. By doing so, cancer centers and cancer-care organizations can engage long-standing conversations and historical relationships through treaties or agreements such as the Two-Row Wampum, cognizant of nation-to-nation responsibilities toward Indigenous cancer healthcare [8, 11, 12]. Collectively, Indigenous cancer center teams led and facilitated by members of local and regional Indigenous Nations can work together toward action-focused and strategic quality improvement initiatives that shape future cancer-care services.

The goal for Indigenous navigation programs is partnership with community champions such as Indigenous health systems, community not-for-profit organizations, or grassroots organizations. Doing so helps to create the trust needed to proactively provide early screening and detection information and train eligible community members to provide cancer and cancer-screening education. Navigators can work closely with community-based teams to engage in warm handoffs from provider, social worker, or case worker to navigator and assist in proactive screening education sessions. Navigators can also work closely with primary care providers and clinical staff to initiate screening opportunities at federal cancer centers and/or other providers across the region. They can work with existing community-oriented resources to avoid duplicating effort while supporting existing teams. In the absence of resources, navigators work with community partners to build culturally appropriate cancer health resources [16]. Ultimately, cancer-focused patient navigators continue to help create and maintain trust of cancer screening within Indigenous communities and provide support across the cancer continuum, thus reducing overall healthcare costs, saving lives, and supporting wellness for future generations.

Conclusion

Cancer is a concern in many Indigenous communities. Programs that intersect cancer centers and urban, rural, territory, reservation, or reserve-based services are critical to improving screening, treatment, and survivor rates. Translational, structured, and sustainable quality improvement efforts to develop new practice models are essential in the ever-changing field of cancer service delivery. This includes the use of successful Indigenous-based models of cancer care-focused patient navigation and based on self-determination, Indigenous knowledge, and strengths-based models. Continued community-based quality improvement mechanisms of cancer care that move toward permanent integration of patient navigation programs are important for community programs to initiate, track, and evaluate ways to tackle the cancer incidence and improve cancer outcomes in Indigenous communities. In addition to quality improvement, there is a need for scientific research in cancer prevention, service, and treatment. These actions will contribute to the maintenance of sovereign health through ancestral ways of living that look forward through multiple generations toward continued resilience built on partnership, relationship, and sovereignty.

This research was supported by shared resources from the Roswell Park Comprehensive Cancer Center Support Grant, National Cancer Institute (P30CA016056), and the Bristol Myers Squibb Foundation.