Improving Native Hawaiian Health Through Community-Based Participatory Research

Abstract

Native Hawaiians, representing 20% of Hawai'i's population, have higher mortality rates and lower life expectancy than all other ethnic groups in Hawai'i and most ethnic groups in the United States. Although research is needed to reduce health disparities, past research abuses have led to feelings of distrust among many Native Hawaiians toward traditionally conducted research. 'Imi Hale-Native Hawaiian Cancer Awareness, Research and Training Network was established in 2000, one of 18 Special Population Networks funded by the National Cancer Institute (NCI), to build a sustainable infrastructure for cancer prevention and control based on principles of community-based participatory research (CBPR). These principles give community members a voice in directing research and provide opportunities for community members to gain from research projects. This paper describes the major structures and mechanisms established by 'Imi Hale to assure community involvement and benefit. We also provide examples of how Native Hawaiians have impacted the design and conduct of specific research projects and how individuals and communities have benefited. 'Imi Hale advisors regularly complete a survey to gauge adherence to CBPR principles, and results from the 2002 survey are presented. The findings suggest that adhering to CBPR principles presents challenges to researchers, but that this approach is well received by the Native Hawaiians involved with 'Imi Hale, many of whom have seen positive benefits for themselves and their communities.

Engaging Pacific Islanders in Research: Community Recommendations

“…1–3 As a result, new models of research have emerged highlighting the potential of community-engaged research and the need to build the capacity among researchers to engage respectfully, ethically, and meaningfully with communities. 4–8 Gaining a better understanding of how researcher capacity can be enhanced from community perspectives may help in more effectively addressing health disparities in minority communities. 9,10 …”

“…8,26–31 One such example is the Ulu Network, a community coalition formed in 2003 by The Center for Native and Pacific Health Disparities Research (The Center) at the University of Hawai‘i, John A. Burns School of Medicine’s Department of Native Hawaiian Health. 11,32 In the Hawaiian language ulu means to grow and it is also the name the breadfruit tree ( Artocarpus altilis ), which produces a popular Pacific produce.…”

Native Hawaiian Views on Biobanking

“…In a 2001 needs assessment involving 980 Native Hawaiians, genetic and biological research was identified as one of five priority issues for awareness and research [11]. However, participants were opposed to research that promotes outsider advancement, provides little or no benefit to participating communities, or uses results to stigmatize Native Hawaiians [12]. A 2004 survey of 357 Native Hawaiians assessed preferences for informed consent and disclosure of results from genetics research and compared findings against those from a White sample [13].…”

Promoting Breast Cancer Screening Among Chamorro Women in Southern California

“…Researchers working with Native Hawaiian populations in Hawaii have reported on a similar type of contamination and have described alternative methods such as focus groups and case studies to document outcomes of community-based participatory research efforts. 15,16 Last, there were several other limitations of this study that may have impacted our ability to detect differences in women's knowledge, beliefs, attitudes, and behaviors. First, we had a significant loss to follow-up (of 26.5%) of respondents during the study.…”