Insights in Public Health: Hana Pu No Ke Ola O Hana ("Working Together for the Health of Hana"): Our 14-year CBPR Journey.

There are substantial and persistent health disparities among Native Hawaiians that are best addressed through multilevel socio-ecological approaches, which are tailored to the needs of the community. Partnerships that link academic investigators with grass roots community members have the potential to profoundly reduce health disparities and improve health and wellness by increasing the capacity of community-based organizations to provide leadership in health advocacy, support community health promotion, and participate in health research. We describe a 14-year partnership to reduce Native Hawaiian health disparities between investigators from The Queen's Medical Center and University of Hawai'i John A. Burns School of Medicine (QMC-JABSOM) and community members in Hana, a geographically isolated, underserved, rural community with the second largest concentration of Native Hawaiians in the state. Our relationship started as an investigator-initiated, National Institutes of Health-sponsored study to explore familial cardiomyopathy, and transitioned to a community-based project that combined community cardiovascular health screening fairs with a qualitative research study to understand attitudes towards genetic research. Most recently, QMC-JABSOM has partnered closely with Ma Ka Hana Ka 'Ike, an award-winning construction skills training program for at-risk youth in Hana, to develop innovative, culturally based interventions to improve health and well-being among Native Hawaiians using principles of community-based participatory research.

Navigating the cultural geography of indigenous peoples' attitude toward genetic research: the Ohana (family) heart project.

BACKGROUND: Little is known about the burden of heart failure among indigenous populations, including Native Hawaiians (NH). Recent concerns about genetic research in the NH community resonate with similar concerns raised by American Indian, Alaskan Native and Canadian First Nations communities and have raised questions about the best way to proceed with studies involving biological specimens. OBJECTIVE: To help us plan a study to investigate disparities in heart failure incidence and outcomes in a NH community, we performed a qualitative study to examine the community's expectations for heart failure research that includes the collection of biological specimens. METHODS: Eighty-five NH with a personal or family history of heart failure, who lived in a geographically isolated community in the state of Hawai'i participated in 1 of 16 semi-structured interviews. Interviews were conducted in a standard manner, with open-ended questions designed to explore their expectations for a heart failure research study that included the collection of biological specimens. Interviews were analyzed thematically through iterative readings and coding. RESULTS: four key themes regarding heart failure research with the use of biological specimens characterized their expectations: (a) Need to foster trust between investigator and community; (b) Establish a partnership with the community to identify needs and goals; (c) Need for mutual benefit to investigator and community; (d) Identification of a key voice to represent the community. Participants expressed strong support for research. However, the strength of that support was directly related to the strength of the relationship between the research team and the community. The collection of biological specimens for genetic analyses was not an explicit concern or barrier per se. CONCLUSIONS: It appears feasible to conduct a heart failure research study that includes the collection of biological samples. However, success will likely require addressing the community's expectations, including the need for a long-term partnership built on trust and mutual benefit, and a key voice to represent the community.