Community-Based Research Should Be Based in the Community
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In the first issue of Progress in Community Health Partnership (PCHP), Editorial Board Chair Claude Earl Fox posed some excellent questions for consideration by academic researchers and community-based programs.1 His questions concerned the ability of academia to make community-based participatory research (CBPR) a priority, the sharing of power between academia and community in CBPR, and incentives for academics and community to engage with each other. Perhaps his overarching query was this: "What is the most effective way to involve community in research without controlling the process through the intimidation of the degree?" His stated goal for PCHP was to offer a forum to help "expand the inventory of effective models of [university–community] cooperation."
In our guest editorial for this special issue of PCHP, we present an example of an effective model of collaboration. `Imi Hale—Native Hawaiian Cancer Network is a program in Hawai`i that leverages community and university resources to reduce cancer health disparities experienced by Kanaka Maoli (Native Hawaiians), the indigenous people of the Hawaiian archipelago. As you will read in several of the articles in this special issue, Native Hawaiians with cancer are more likely to be diagnosed with late-stage disease and are more likely to die than Caucasian Americans.2 The National Cancer Institute (NCI) recognizes the need for targeted cancer programming and research in disparate communities and, through its Center to Reduce Cancer Health Disparities, funds 25 Community Network Programs across the country.3 `Imi Hale (pronounced EE-ME HA-LAY) is one of these programs (U01-CA114630).
The overall goal of `Imi Hale is to reduce cancer incidence and mortality among Native Hawaiians by maintaining and expanding an infrastructure that (1) promotes cancer awareness within Native Hawaiian communities, (2) provides education and training to increase cancer prevention and control research by Native Hawaiians, with the goal of developing more Native Hawaiian researchers, and (3) facilitates the application of evidence-based information to reduce cancer health disparities through the development of policy and the translation of science into cancer prevention and control practice.
`Imi Hale's work is guided by CBPR principles and empowerment theory, both aimed at strengthening the capacity of Native Hawaiian individuals and communities to identify their own problems and advocate for their own solutions.2 Since 2000, Native Hawaiian Nā Liko Noelo (Hawaiian for budding researchers) have completed more than 35 research projects, developed more than 20 new educational curricula and products, and published more than 80 manuscripts in peer-reviewed journals. We could identify only three Native Hawaiian researchers in 2000; since then, more than 14 Native Hawaiians have completed or enrolled in doctoral degree programs and are pursuing research, and 30 more have completed or enrolled in medical school or masters degree programs.
`Imi Hale's model of cooperation is quite simple. This program is based in the community, rather than the university. Papa Ola Lōkahi, a community organization dedicated to Native Hawaiian health and well-being, won the first NCI Cooperative Agreement for `Imi Hale in 2000 and has provided a home ever since.
Three groups guide our work (Figure 1). Our 10-member Community Council (100% of Hawaiian ancestry) advises on the cultural appropriateness of the research, researchers, and program activities. Our 10-member Scientific Council (50% Native [End Page 271] Hawaiian) advises on the scientific merit of research projects. Our 11-member Steering Committee (73% Native Hawaiian) establishes policy and approves research pilot projects. Collectively, these groups provide key avenues to increase Native Hawaiian leadership and participation in cancer prevention and control.
Collaboration is critical, and partnerships with more than 60 entities have been formalized through memoranda and contracts. Examples of clinical partners are: the five Native Hawaiian Health Care Systems (NHHCS) providing access and prevention services to Native Hawaiians on the state's 7 inhabited islands; The Queen's Cancer Center, Hawai`i's largest provider of tertiary (and cancer) care; and the Hawai`i Breast and Cervical Cancer Control Program, provider of breast health care, for medically uninsured and underinsured women. Examples of program partners include the American Cancer...
