Minority Health and Health Equity Archive
Permanent URI for this collectionhttp://hdl.handle.net/1903/21769
Welcome to the Minority Health and Health Equity Archive (MHHEA), an electronic archive for digital resource materials in the fields of minority health and health disparities research and policy. It is offered as a no-charge resource to the public, academic scholars and health science researchers interested in the elimination of racial and ethnic health disparities.
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Item Ethics of Health Research in Communities: Perspectives From the Southwestern United States(2010) Williams, R. L.; Willging, C. E.; Quintero, G.; Kalishman, S.; Sussman, A. L.; Freeman, W. L.PURPOSE: The increasing attention paid to community-based research highlights the question of whether human research protections focused on the individual are adequate to safeguard communities. We conducted a study to explore how community members perceive low-risk health research, the adequacy of human research protection processes, and the ethical conduct of community-based research. METHODS: Eighteen focus groups were conducted among rural and urban Hispanic and Native American communities in New Mexico using a semistructured guide. Group transcriptions were analyzed using iterative readings and coding, with review of the analytic summary by group members. RESULTS: Although participants recognized the value of health research, many also identified several adverse effects of research in their communities, including social (community and individual labeling, stigmatization, and discrimination) and economic (community job losses, increased insurance rates, and loss of community income). A lack of community beneficence was emphasized by participants who spoke of researchers who fail to communicate results adequately or assist with follow-through. Many group members did not believe current human research and data privacy processes were adequate to protect or assist communities. CONCLUSIONS: Ethical review of community-based health research should apply the Belmont principles to communities. Researchers should adopt additional approaches to community-based research by engaging communities as active partners throughout the research process, focusing on community priorities, and taking extra precautions to assure individual and community privacy. Plans for meaningful dissemination of results to communities should be part of the research design.Item The Marriage of Community-based Participatory Research and Practice-based Research Networks: Can It Work? -A Research Involving Outpatient Settings Network (RIOS Net) Study(2009) Williams, R. L.; Shelley, B. M.; Sussman, A. L.BACKGROUND: Interest in community-based participatory research (CBPR) has surged during the last several years because of its potential to enhance the quality and usefulness of research outcomes. Practice-based research networks (PBRNs) potentially can provide a bridge between the research endeavor and communities; PBRNs have been identified as a promising venue for CBPR. However, this marriage of CBPR and PBRNs faces many challenges, such as locus of project idea generation, time constraints, and funding limitations. METHODS: This was a case study of the application of the CBPR model and CBPR principles specific to PBRN research using a recent PBRN study of communication about traditional, complementary, and alternative medicines. RESULTS: Challenges (eg, added cost, time) and benefits (eg, improved research data collection process, enhanced data analysis) resulted from application of the CBPR model and are detailed. CONCLUSIONS: For practical and ethical reasons, PBRNs need to adopt the CBPR approach for certain types, if not all, of their research. This might require operational adaptations by the PBRN (eg, a community advisory board, community membership in the network board of directors, and outreach to community groups for input into network priorities) as well as dedicated time and funding.