Community-based participatory research (CBPR) and community-engaged research have been established in the past 25 years as valued research approaches within health education, public health, and other health and social sciences for their effectiveness in reducing inequities. While early literature focused on partnering principles and processes, within the past decade, individual studies, as well as systematic reviews, have increasingly documented outcomes in community support and empowerment, sustained partnerships, healthier behaviors, policy changes, and health improvements. Despite enhanced focus on research and health outcomes, the science lags behind the practice. CBPR partnering pathways that result in outcomes remain little understood, with few studies documenting best practices. Since 2006, the University of New Mexico Center for Participatory Research with the University of Washington’s Indigenous Wellness Research Institute and partners across the country has engaged in targeted investigations to fill this gap in the science. Our inquiry, spanning three stages of National Institutes of Health funding, has sought to identify which partnering practices, under which contexts and conditions, have capacity to contribute to health, research, and community outcomes. This article presents the research design of our current grant, Engage for Equity, including its history, social justice principles, theoretical bases, measures, intervention tools and resources, and preliminary findings about collective empowerment as our middle range theory of change. We end with lessons learned and recommendations for partnerships to engage in collective reflexive practice to strengthen internal power-sharing and capacity to reach health and social equity outcomes.
Saccharomyces cerevisiae a cells secrete an extracellular protein, called "barrier" activity, that acts as an antagonist of a factor, the peptide mating pheromone produced by mating-type a cells. We report here the DNA sequence of BAR], the structural gene for barrier activity. The deduced primary translation product of 587 amino acids has a putative signal peptide, nine potential asparagine-linked glycosylation sites, and marked sequence similarity of the first two-thirds of the protein with pepsin-like proteases. Barrier activity was abolished by in vitro mutation of an aspartic acid predicted from this sequence homology to be in the active site. Therefore, barrier protein is probably a protease that cleaves a factor. The sequence similarity suggests that the first two-thirds of the barrier protein is organized into two distinct structural domains like those of the pepsin-like proteases. However, the BAR) gene product has a third carboxyl-terminal domain of unknown function; deletion of at least 166 of the 191 amino acids of this region has no significant effect on barrier activity.
National Institutes of Health data-sharing policies aim to maximize public benefit derived from genetic studies by increasing research efficiency and the use of a pooled data resource for future studies. While broad access to data may lead to benefits for populations underrepresented in genetic studies, such as indigenous groups, tribes have ownership interest in their data. The Northwest-Alaska Pharmacogenetic Research Network, a partnership involving tribal organizations and universities conducting basic and translational pharmacogenetic research, convened a meeting to discuss the collection, management, and secondary use of research data, and of the processes surrounding access to data stored in federal repositories. This article reports on tribal perspectives that emerged from the dialogue and discusses the implications of tribal government sovereign status on research agreements and data-sharing negotiations. There is strong tribal support for efficient research processes that expedite the benefits from collaborative research, but there is also a need for data sharing procedures that take into account tribal sovereignty and appropriate oversight of research ¬ such as tribally-based research review processes and review of draft manuscripts. We also note specific ways in which accountability could be encouraged by National Institutes of Health as part of the research process.
The Tribal Maternal, Infant, and Early Childhood Home Visiting (Tribal MIECHV) Program provides federal grants to tribes, tribal consortia, tribal organizations, and urban Indian organizations to implement evidence-based home-visiting services for American Indian and Alaska Native (AI/AN) families. To date, only one evidence-based home-visiting program has been developed for use in AI/AN communities. The purpose of this article is to describe the steps that four Tribal MIECHV Programs took to assess community needs, select a home-visiting model, and culturally adapt the model for use in AI/AN communities. In these four unique Tribal MIECHV Program settings, each program employed a rigorous needs-assessment process and developed cultural modifications in accordance with community strengths and needs. Adaptations occurred in consultation with model developers, with consideration of the conceptual rationale for the program, while grounding new content in indigenous cultures. Research is needed to improve measurement of home-visiting outcomes in tribal and urban AI/AN settings, develop culturally grounded home-visiting interventions, and assess the effectiveness of home visiting in AI/AN communities.
Research in Indigenous communities is at the forefront of innovation currently influencing several new perspectives in engaged intervention science. This is innovation borne of necessity, involving efforts to create health equity complicated by a history of distrust of research. Immense diversity across Indigenous cultures, accompanied by variation in associated explanatory models, health beliefs, and health behaviors, along with divergent structural inequities add further complexity to this challenge. The aim of this Supplemental Issue on Promoting Health Equity through Rigorous, Culturally Informed Intervention Science: Innovations with Indigenous Populations in the United States is to highlight the promising new approaches and perspectives implemented by a group of engaged researchers and their community partners, as they seek to move intervention research forward within Indigenous communities. Case studies presented are from projects led by investigators who conduct health promotion and disease prevention research among American Indians, Alaska Natives, and Native Hawaiians, members of the
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