Community-Based Participatory Research Integrates Behavioral and Biological Research to Achieve Health Equity for Native Hawaiians

Abstract

Native Hawaiians bear a disproportionate burden of type-2 diabetes and related complications compared to all other groups in Hawai‘i (e.g., Whites, Japanese, Korean). Distrust in these communities is a significant barrier to participation in epigenetic research studies seeking to better understand disease processes. The purpose of this paper is to describe the community-based participatory research (CBPR) approach and research process we employed to integrate behavior and biological sciences with community health priorities. A CBPR approach was used to test a 3-month evidence-based, diabetes self-management intervention (N = 65). To investigate the molecular mechanisms linking inflammation with glucose homeostasis, a subset of participants (n = 16) provided peripheral blood mononuclear cells. Community and academic researchers collaborated on research design, assessment protocols, and participant recruitment, prioritizing participants’ convenience and education and strictly limiting the use of the data collected. Preliminary results indicate significant changes in DNA methylation at gene regions associated with inflammation and diabetes signaling pathways and significant improvements in hemoglobin A1c, self-care activities, and diabetes distress and understanding. This study integrates community, behavioral, and epigenomic expertise to better understand the outcomes of a diabetes self-management intervention. Key lessons learned suggest the studies requiring biospecimen collection in indigenous populations require community trust of the researchers, mutual benefits for the community and researchers, and for the researchers to prioritize the community’s needs. CBPR may be an important tool in providing communities the voice and protections to participate in studies requiring biospecimens.

Type 2 Diabetes and Indigenous Peoples

“…One pilot study with a wait-list control group in Native Hawaiians showed that culturally adapted diabetes self-management education building on culturally relevant knowledge and activities (i.e. groupbased educational format to facilitate social support, convenient community location, delivered by local community members in the local language, incorporation of local images/food/common physical activities/local people to increase relevance) for 3 months improved A1C, diabetes understanding and diabetes selfmanagement (97,98). In a qualitative study in rural Australia, participants reported both negative influences (i.e.…”

Best Practices for Community-Engaged Research with Pacific Islander Communities in the US and USAPI: A Scoping Review

“…Community-based organizations.-The involvement of community leaders through community-based organizations was discussed in 80% of the articles. [62][63][64][65][66][67]69,70,[98][99][100][101][102][103][104][105][106][107][108][109][110][111][112]116,117,[120][121][122][123][124][125][126][127][128][129][130][131][132][133][134][135][136] The involvement of community-based organizations was cited as a way to leverage, build, and sustain leadership within the Pacific Islander community. 81 Community-based organizations (e.g., federally qualified community health centers and grassroots non-profit community-based organizations) were described as playing a direct role in the research design, study conduct, and dissemination of the results back to the community.…”

“…Community advisory board.-More than half (54%) of the reviewed articles mentioned partnering with a community advisory board. 62,[64][65][66][67]69,70,[72][73][74][75][76][78][79][80][81][82][83][84][85][86][87][88][89][90][91][92][93][94][95][98][99][100][101][102][103][104][105][106][107][108][109][110][111][112]116,117,[120][121][122][123]…”

“…Group engagement.-Over half (55%) of the articles discussed the importance of implementing research in group settings citing using focus group discussions and collecting data via surveys in groups as examples. [62][63][64]66,67,[70][71][72]74,[76][77][78][79][80][81][85][86][87][88]90,92,93,[95][96][97]99,100,102,104,106,108,109,112,113,116,119,121,124,125,127,134,144,145 Group engagement in study activities supported increased community and participant comfort with research activities and was described as reflective of Pacific Islander cultural values, yielding enhanced involvement from Pacific Islander participants. For example, Kagawa-Singer et al documented that Pacific Islander participants may be more comfortable providing information if friends from their community were allowed to participate as well.…”

The 2014 Minority Health and Health Disparities Grantees’ Conference

“…They recommended that academic institutions must reach out to local community groups and together address local health issues that affect the community. Townsend and collaborators [9] conducted a CBPR to better understand and address the disproportionate burden of type-2 diabetes and related complications among Native Hawaiians compared to all other groups in Hawaii (e.g., Whites, Japanese, Korean). Their study findings stressed the importance of securing the thrust of communities for research participation, and engagement in health assessments and disease control and prevention.…”