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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.

SUBMITTER: Townsend CK

PROVIDER: S-EPMC4730395 | biostudies-literature | 2015 Dec

REPOSITORIES: biostudies-literature

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Project description:BackgroundThis formative study leveraged a community-academic partnership to identify barriers to care that are potential sources of breast cancer disparities in Black women. Through this partnership and using a community-based participatory research approach, the objective was to develop a community task force to inform future interventions aimed at addressing breast cancer disparities and increasing health equity.MethodsThe authors assessed gaps in care related to breast cancer in Buffalo, New York, by collecting and analyzing qualitative data from focus groups and interviews with breast cancer survivors and breast navigation groups assessing barriers and facilitators across the cancer care continuum. Then, community-based participatory research approaches were used to build a task force to develop an action plan addressing gaps in care.ResultsThe authors conducted a thematic analysis of qualitative findings to understand barriers and facilitators to cancer care. Three main domains of themes emerged, including medical mistrust, fear, and stigma; the importance of patient navigation as a form of social support; and the importance of faith and faith-based community. Finally, the findings were presented to a newly formed community task force to validate the data collected and set future priorities to address breast cancer disparities and increase breast health equity in the region.ConclusionsThe authors observed that health equity is a critically important issue in cancer care and that developing culturally tailored interventions has the potential to improve care delivery and reduce breast cancer disparities. Learning from and working with community members helps set the future agenda related to health equity.Plain language summaryOur overall goal was to assess gaps in breast cancer care in Buffalo, New York, and to use community-based participatory approaches to build a task force to work toward breast health equity. Recent and historical data indicate that the Western New York community is facing a continued wide gap in breast cancer mortality trends between Black and White patients. We collected qualitative data to understand potential sources of inequity related to breast cancer and presented findings to a community task force to set future priorities for addressing breast cancer disparities and increasing breast health equity in our region.

Project description:National and international codes of research conduct have been established in most industrialized nations to ensure greater adherence to ethical research practices. Despite these safeguards, however, traditional research approaches often continue to stigmatize marginalized and vulnerable communities. Community-based participatory research (CBPR) has evolved as an effective new research paradigm that attempts to make research a more inclusive and democratic process by fostering the development of partnerships between communities and academics to address community-relevant research priorities. As such, it attempts to redress ethical concerns that have emerged out of more traditional paradigms. Nevertheless, new and emerging ethical dilemmas are commonly associated with CBPR and are rarely addressed in traditional ethical reviews. We conducted a content analysis of forms and guidelines commonly used by institutional review boards (IRBs) in the USA and research ethics boards (REBs) in Canada. Our intent was to see if the forms used by boards reflected common CBPR experience. We drew our sample from affiliated members of the US-based Association of Schools of Public Health and from Canadian universities that offered graduate public health training. This convenience sample (n = 30) was garnered from programs where application forms were available online for download between July and August, 2004. Results show that ethical review forms and guidelines overwhelmingly operate within a biomedical framework that rarely takes into account common CBPR experience. They are primarily focused on the principle of assessing risk to individuals and not to communities and continue to perpetuate the notion that the domain of "knowledge production" is the sole right of academic researchers. Consequently, IRBs and REBs may be unintentionally placing communities at risk by continuing to use procedures inappropriate or unsuitable for CBPR. IRB/REB procedures require a new framework more suitable for CBPR, and we propose alternative questions and procedures that may be utilized when assessing the ethical appropriateness of CBPR.

Project description:IntroductionMedication reconciliation, a technique that assists in aligning a care team's understanding of an individual's true medication regimen, is vital to optimize medication use and prevent medication errors. Historically, most medication reconciliation research has focused on institutional settings and transitional care, with comparatively little attention given to medication reconciliation in community settings. To optimize medication reconciliation for community-dwelling older adults, healthcare professionals and older adults must be engaged in co-designing processes that create sustainable approaches.MethodsAcademic researchers, older adults, and community- and health system-based healthcare professionals engaged in a participatory process to better understand medication reconciliation barriers and co-design solutions. The initiative consisted of two participatory research approaches: (1) Sparks Innovation Studios, which synthesized professional expertise and opinions, and (2) a Community Consultation Studio with older adults. Input from both groups informed a list of possible solutions and these were ranked based on evaluative criteria of feasibility, person-centeredness, equity, and sustainability.ResultsSparks Innovation Studios identified a lack of ownership, fragmented healthcare systems, and time constraints as the leading barriers to medication reconciliation. The Community Consultation Studio revealed that older adults often feel dismissed in medical encounters and perceive poor communication with and among providers. The Community Consultation Studio and Sparks Innovation Studios resulted in four highly-ranked solutions to improve medication reconciliation: (1) support for older adults to improve health literacy and ownership; (2) ensuring medication indications are included on prescription labels; (3) trainings and incentives for front-line staff in clinic settings to become champions for medication reconciliation; and (4) electronic health record improvements that simplify active medication lists.ConclusionEngaging community representatives with academic partners in the research process enhanced understanding of community priorities and provided a practical roadmap for innovations that have the potential to improve the well-being of community-dwelling older adults.

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

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