FormalPara Key Points

  • ‘Imi Hale was funded with a grant from the National Cancer Institute directly to the community-based, community-governed organization Papa Ola Lōkahi. Funds were managed and governed by Papa Ola Lōkahi, with the university subcontracted to provide assistance with research.

  • ‘Imi Hale demonstrated a high level of responsiveness to community-identified priorities and needs, instilling accountability to report and translate data and lessons learned to the communities served.

  • ‘Imi Hale invested equal time and resources in cancer education and awareness, training, service development, and research capacity building.

  • ‘Imi Hale developed an extensive and diverse network of local, national, and international partners to offer knowledge, resources, services, and guidance in cancer health disparities research and programming.

Native Hawaiians, Indigenous to the Hawaiian archipelago, were once a self-governed, robust, and self-sufficient group. Their advanced social, environmental, and health systems allowed them to prosper in these remote Pacific islands for over 2000 years. Colonizers brought disease, guns, and Western concepts of propriety and private property, resulting in a 90% decline in the Indigenous population within 100 years of contact, along with loss of land, livelihood, language, culture, and power [1].

Hawai‘i began to collect race-specific cancer data in the 1970s, and the Native Hawaiian Health Care Improvement Act of 1988 (PL 100-579) increased attention to Hawaiian health issues. Native Hawaiians were reported to be disproportionately affected by cancer. However, fewer than five Native Hawaiians held cancer-related leadership positions in 2000. Existing research did not address Native Hawaiian priorities, was not conducted in culturally appropriate ways, and was not perceived by Hawaiians as beneficial, generating feelings of exploitation and stigmatizing Native Hawaiians as sick and uncaring about their health [2].

The ‘Imi Hale Native Hawaiian Cancer Network was funded by the National Cancer Institute (NCI) from 2000 to 2017 to address cancer health disparities faced by Native Hawaiians (U01CA86105, U01CA114630, U54CA153459). The project achieved excellent outcomes, detailed in Table 67.1. Two key factors contributed to its success. First, the award was granted to a Native Hawaiian non-profit organization rather than an academic institution. Second, the project allocated equal resources to education, service, policy development, and research.

Table 67.1 ‘Imi Hale program successes
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Reasons for Success

Community-Based, Community-Placed, and Community-Governed

Papa Ola Lōkahi, an organization serving Native Hawaiians and associated with five Native Hawaiian Health Care Systems (NHHCSs), was awarded funding by the NCI. While NCI typically funds universities, this arrangement provided a Native Hawaiian organization and community network a chance to promote cancer awareness and facilitate cancer research. Unencumbered by the bureaucracy and high operating costs of a university, ‘Imi Hale was able to efficiently utilize resources and quickly enact subcontracts. This resulted in an infrastructure that elevated community voice and expanded Native Hawaiian capacity to engage in the research enterprise, an arena from which they were historically excluded (except as “subjects”).

‘Imi Hale was conceived by Native Hawaiian healthcare providers, and 66% of staff members were Native Hawaiian with strong ties to the community. Subcontracts were established with the University of Hawai‘i to provide research expertise. Specifically, a trusted professor with a track record in community-based participatory research was contracted at 75% of full-time to provide one-on-one assistance, training, and mentorship to Native Hawaiian researchers and to assist staff in navigating the university system when needed [3]. Two more seasoned investigators provided higher-level guidance on research. The parent NCI grant solicited pilot research applications from awardees annually. ‘Imi Hale gave priority to the research proposals of Native Hawaiian investigators (90% of the total), providing just-in-time training with research design, implementation, and dissemination.

‘Imi Hale was governed by predominantly Native Hawaiian working committees (Fig. 67.1). A 10-member Community Council (100% Native Hawaiian) advised on the cultural appropriateness of research, researchers, and program activities. A 10-member Scientific Council (50% Native Hawaiian) advised on the scientific merit of research projects. An 11-member Steering Committee (73% Native Hawaiian) set policy. Furthermore, ‘Imi Hale established and staffed the 20-member Native Hawaiian Institutional Review Board (IRB, 78% Native Hawaiian, 40% community representatives). Council and IRB members reviewed every project, privileging Native Hawaiian priorities and views [4].

Fig. 67.1
A radial chart labeled Hawaiian community. Arrows mark percentages of Hawaiians in community council 100%, Imi Hale staff 75%, researchers 95%, Native Hawaiian I R B 78%, Native health care system 80%, steering committee 73%, and scientific council 50%.

‘Imi Hale’s infrastructure

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For example, Council members suggested interviewing Native Hawaiian cancer survivors to better learn about their challenges in seeking care and participating in clinical trials. On-the-ground providers helped develop interview questions, and Native Hawaiian researchers were trained to lead focus groups while following cultural protocols. The Native Hawaiian IRB mandated additional safeguards, including having counseling available for participants for a year after the study. Results were shared first with participants, then with Council members and community partners, and finally published [5].

Lacking the infrastructure of a university, ‘Imi Hale sought and benefitted from the mentorship of researchers, programs, and policy experts from other institutions, including other NCI grantees, the Oregon Health Sciences University, Native American Cancer Research Corporation, the Native Hawaiian Civic Clubs, the Harold P Freeman Patient Navigation Institute, and multiple others that actively served and engaged Indigenous/minority researchers and communities.

Focus on Program and Policy, as Well as Research

Unlike traditional National Institutes of Health (NIH)–funded initiatives that focus on research, this funding mechanism required grantees to also address cancer education and awareness. ‘Imi Hale invested heavily in developing culturally relevant materials to supplant national materials that had little relevance to Hawaiian communities. Using a four-step protocol that involved pretesting and feedback from consumers and providers, these products reflected Hawaiian values, language, and authentic community voices [6]. More than 150 educational products were developed, including brochures, posters, toolkits, training curricula, and presentations. For two decades, ‘Imi Hale was the largest producer and distributor of cancer-education materials in the state, supplying the local health department, healthcare centers, and cancer-support groups.

In research, ‘Imi Hale assisted more than 150 Native Hawaiian students, post-docs, faculty, and clinicians with research design, grant proposals, manuscripts, and presentations. Investigators applied for research funding through NCI and other sources, and more than $9 million was secured for 50 research projects. Findings from these projects appeared in over 190 peer-reviewed articles. Many investigators were supported to attend research training outside of Hawai‘i, and more than 40 were assisted in pursuing graduate degrees. Today, these individuals are leading research and programs in Hawai‘i.

‘Imi Hale was instrumental in securing $26 million to support various cancer care initiatives, including Hawai‘i’s cancer patient navigation training program. Each 48-hour training involved 30 faculty who taught about cancer, clinical trials, and social services [7]. Over eight years, 16 training programs, seven annual conferences, and 50 continuing education sessions were conducted; 223 navigators, 45% from rural areas, were trained; and 13 health centers established navigation programs and positions. A rural hospital was assisted in conducting a randomized clinical trial of a screening navigation program that resulted in a significant increase in cancer screening [8]. In another initiative, Pacific Islander women were trained as lay navigators, leading to a significant increase in compliance with mammography screening [9].

In the policy arena, ‘Imi Hale collaborated with state and pharmaceutical partners to expand the capabilities of pharmacies in administering HPV vaccines to adolescents and to make this a school-recommended vaccine. The team helped change state and county laws to reduce access and exposure to tobacco. These initiatives garnered support and involvement from youth and organizational partners and were reinforced by ‘Imi Hale education resources [10].

In healthcare, ‘Imi Hale worked with Hawai‘i’s largest medical center to develop cancer biobanking policies that consented patients post-op for remnant tissue, allowing them to opt out of blanket consent and choose to be reconsented when their tissue was requested for research. ‘Imi Hale partnered with the same facility to increase primary care physician knowledge and willingness to refer Native Hawaiian to clinical trials [11]. ‘Imi Hale trained NHHCS staff in tobacco cessation and helped the network develop and institutionalize a tobacco cessation protocol across the five clinics [12]. The program also partnered with the state’s 14 Federally Qualified Health Centers (FQHCs) to provide training on updated colorectal cancer screening protocols, resulting in increased screening rates.

Conclusion

The ‘Imi Hale Native Hawaiian Cancer Network serves as a compelling case study, demonstrating the effectiveness of a community-based, community-placed, community-governed, cancer-control program. Attending to Native Hawaiian self-determination, ‘Imi Hale was developed and operated by Native Hawaiians for Native Hawaiians. This yielded meaningful and more equitable partnerships with the university and other providers while increasing community capacity and agency to address cancer health disparities.