The Indigenous Peoples Navigation Network (IPNN): An International Virtual Support Network

FormalPara Key Points

• Indigenous navigation programs have been successfully implemented in many countries.

• Many resources exist to support patient navigators and sharing these resources has benefited local programs.

• Sharing lessons learned from local Indigenous programs can assist other Indigenous navigation programs.

• Globally, and despite historical and cultural differences, Indigenous programs share many commonalities.

Native American Cancer Research Corporation (NACR) has implemented patient navigation services since 1994 and conducted Native Patient Navigation training since the late 1990s. Patient navigators (PNs) who completed the training repeatedly expressed appreciation for the opportunity to talk, network, and collaborate with other PNs who work in Indigenous settings.

In response to this feedback, the Indigenous Peoples Navigation Network (IPNN, pronounced “I-pin”) was initiated on September 21, 2021. The concept was first discussed in 2016, during the first World Indigenous Cancer Conference (Brisbane, Australia) while participants were sharing their histories and experiences. The idea came to fruition when the Academy of Oncology Nurse & Patient Navigators (AONN+)¹ introduced Local Navigation Networks. The IPNN is categorized as a “Local Navigation Network” within AONN+. However, this is a misnomer, as a global organization is clearly not “local.”

The purpose of the IPNN is to provide a virtual support program to address the culturally and geographically unique challenges of Indigenous navigation programs and provide appropriate solutions to them. Many navigators work in isolation. The rationale and focus of the IPNN is to share stories of how navigation programs have overcome challenges in culturally respectful ways. Such stories may prompt PNs working in other regions or continents to try something new or to adapt a strategy that proved successful in another setting.

The IPNN is a voluntary organization for which there is no funding. It includes navigators from different countries who are interested in helping others avoid mistakes and enjoy successes. It presents four webinars each calendar year that average 90 min. Most involve speaker presentations. Participants suggest aspects of their work for which they would like help and, when feasible, identify speakers for those topics.

Participants include cancer PNs who work within Indigenous programs in the USA, Pacific Islands, Canada, Aotearoa New Zealand, and Australia. Most of these countries have similar historical backgrounds, typically involving (but not limited to) invasion and occupation by European and/or other countries, bio-colonialism, loss of lands, and attempts to eliminate local cultural languages and practices. The IPNN members include both Indigenous and non-Indigenous people who work (or want to work) respectfully with Indigenous people and programs. As of August 2023, the IPNN had 59 participants, mostly from the USA and Canada. Its membership in Aotearoa New Zealand and Australia continues to grow.

In 2022, the Professional Oncology Navigation Task Force (PONT) obtained consensus for consistent definitions and phrasing about patient navigation after receiving input from about 50 oncology navigation groups [1, 2]. These PONT definitions are:

• Professional Navigator: A trained individual who is employed and paid by a healthcare, advocacy, and/or community-based organization to fill the role of oncology navigator. Positions that fall under this category include:

  • Oncology Patient Navigator, who provides individualized assistance to patients and families affected by cancer to improve access to healthcare services. The navigator may work at the point of screening, diagnosis, treatment, or survivorship or across the cancer care spectrum. An oncology patient navigator does not have or use clinical training (and is sometimes referred to as a “lay” or “community” navigator).

  • Clinical Navigator:

    • Oncology Nurse Navigator, a professional RN with oncology-specific clinical knowledge who offers individual assistance to patients, families, and caregivers to help overcome healthcare system barriers. An oncology nurse navigator provides education and resources to facilitate informed decision-making and timely access to quality health and psychosocial care throughout all phases of the cancer continuum.

    • Oncology Social Work Navigator, a professional social worker with oncology-specific and clinical psychosocial knowledge who offers individual assistance to patients, families, and caregivers to help overcome healthcare system barriers. An oncology social work navigator provides education and resources to facilitate informed decision-making and timely access to quality health and psychosocial care throughout all phases of the cancer continuum.

• Oncology Navigation: Individualized assistance offered to patients, families, and caregivers to help overcome healthcare system barriers and facilitate timely access to quality health and psychosocial care from pre-diagnosis through all phases of the cancer experience.

• Patient: An individual screened for or diagnosed with cancer as well as their family and support systems.

In the USA, recommendations in July 2023 from the Centers for Medicare & Medicaid Services enabled reimbursement for some patient navigation services [3]. This is a substantial breakthrough for the sustainability of navigation services and professional recognition. PNs complete competency-based training under a variety of domains including professional issues, client and care team interaction, health knowledge, patient care, and communication [4].

The IPNN includes all types of PNs and community health workers. Most IPNN participants are community-based. Some work entirely alone with little or no access to relevant resources.

Many IPNN navigators focus on prevention (e.g., cessation of tobacco smoking, increased physical activity), some specifically on screening (e.g., breast, cervix, colon), and some on survivorship programs. Others address the full cancer continuum (outreach and education through to end of life). Most are involved in small programs, while many are start-ups comprising navigators who want to learn from others about effective and respectful ways to work with Indigenous peoples around the world.

The greatest challenge the IPNN encounters is the fact that its membership spans 24 time zones. Furthermore, many participants have internet issues, such as low bandwidth or lack of access, especially in rural regions. This is extremely problematic, given that all IPNN gatherings are virtual. Since March 2022, the IPNN’s webinars have been recorded and posted on the IPNN website, to address this problem.²

Since September 2021, the IPNN has held nine webinars, which are summarized below.

• 1. An overview of patient navigation and international perspectives, with an informal discussion about how the IPNN could assist Indigenous PNs.

• 2. Community Action Boards and the Seasons of Care Study (to identify cultural modifications, which resulted an online resource³) and Roswell Park’s Indigenous Cancer Program and their new Indigenous navigation program.

• 3. Patient navigation for Aboriginal and Torres Strait Islander people in Australia and the Indigenous Women’s Cancer Action Group in South Australia.

• 4. The PONT definitions, issues specific to PN metrics, and strategies to integrate AONN+-recommended navigation metrics.

• 5. A focus on colorectal cancer incidence and mortality for Alaska Natives, including a discussion about strategies to increase Alaska Natives’ participation in CRC screening.

• 6. The use of consistent terminology and umbrella terms and discussion about resources to help PNs with terminology related to genetic and precision medicine.

• 7. The American Indian Accelerating Colorectal Cancer Screening and Follow-up through Implementation Science (ACCSIS) projects, with a focus on barriers to screening and ways to improve cultural relevance of programs, and an overview of the success of the New Mexico American Indian ACCSIS CRC project.

• 8. A panel discussion about Walking Forward Community Research outcomes which identified culturally specific tailoring of low-dose computed tomography (LDCT) education materials for South Dakota healthcare providers and community members.

• 9. The Michigan Self-Sampling Home Health studies and how PNs can help people learn how to use home testing for human papillomavirus (HPV), and resources available from the AONN+ Cancer Advocacy & Patient Education initiative.