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Needs, Priorities, and Recommendations for Engaging Underrepresented Populations in Clinical Research: A Community Perspective

Engaging underrepresented groups in outcomes research is a public health priority for reducing health and health care disparities; yet, engaging these groups is challenging. Failure to involve these underrepresented populations in research further exacerbates these disparities. This article presents...

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Autores principales: Erves, Jennifer Cunningham, Mayo-Gamble, Tilicia L., Malin-Fair, Alecia, Boyer, Alaina, Joosten, Yvonne, Vaughn, Yolanda C., Sherden, Lisa, Luther, Patrick, Miller, Stephania, Wilkins, Consuelo H.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer US 2016
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5408035/
https://www.ncbi.nlm.nih.gov/pubmed/27812847
http://dx.doi.org/10.1007/s10900-016-0279-2
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author Erves, Jennifer Cunningham
Mayo-Gamble, Tilicia L.
Malin-Fair, Alecia
Boyer, Alaina
Joosten, Yvonne
Vaughn, Yolanda C.
Sherden, Lisa
Luther, Patrick
Miller, Stephania
Wilkins, Consuelo H.
author_facet Erves, Jennifer Cunningham
Mayo-Gamble, Tilicia L.
Malin-Fair, Alecia
Boyer, Alaina
Joosten, Yvonne
Vaughn, Yolanda C.
Sherden, Lisa
Luther, Patrick
Miller, Stephania
Wilkins, Consuelo H.
author_sort Erves, Jennifer Cunningham
collection PubMed
description Engaging underrepresented groups in outcomes research is a public health priority for reducing health and health care disparities; yet, engaging these groups is challenging. Failure to involve these underrepresented populations in research further exacerbates these disparities. This article presents the health and research priorities of diverse groups of underrepresented populations in biomedical research, their concerns for participating in research, and strategies to engage them in their healthcare and research studies. Eleven community listening sessions, ranging from 7 to 13 community members each (N = 117), representing racial/ethnic minority, economically disadvantaged (e.g., uninsured), and hearing impaired communities. We used an inductive, qualitative content analysis approach to analyze the data for emerging themes. We identified the following themes: Uncertainties of underrepresented populations regarding research participation; Ineffective communication about research opportunities and research findings; Research on primary care and prevention are priorities for underrepresented populations in research; and Research teams need training in cultural competence and humility. Underrepresented groups provided research priorities, concerns, and strategies to engage them in their healthcare and in research studies. Findings from this study could facilitate improvement of research participation among underrepresented groups, ultimately reducing health disparities and improving quality of life among groups commonly omitted from research recruitment and participation.
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spelling pubmed-54080352017-05-12 Needs, Priorities, and Recommendations for Engaging Underrepresented Populations in Clinical Research: A Community Perspective Erves, Jennifer Cunningham Mayo-Gamble, Tilicia L. Malin-Fair, Alecia Boyer, Alaina Joosten, Yvonne Vaughn, Yolanda C. Sherden, Lisa Luther, Patrick Miller, Stephania Wilkins, Consuelo H. J Community Health Original Paper Engaging underrepresented groups in outcomes research is a public health priority for reducing health and health care disparities; yet, engaging these groups is challenging. Failure to involve these underrepresented populations in research further exacerbates these disparities. This article presents the health and research priorities of diverse groups of underrepresented populations in biomedical research, their concerns for participating in research, and strategies to engage them in their healthcare and research studies. Eleven community listening sessions, ranging from 7 to 13 community members each (N = 117), representing racial/ethnic minority, economically disadvantaged (e.g., uninsured), and hearing impaired communities. We used an inductive, qualitative content analysis approach to analyze the data for emerging themes. We identified the following themes: Uncertainties of underrepresented populations regarding research participation; Ineffective communication about research opportunities and research findings; Research on primary care and prevention are priorities for underrepresented populations in research; and Research teams need training in cultural competence and humility. Underrepresented groups provided research priorities, concerns, and strategies to engage them in their healthcare and in research studies. Findings from this study could facilitate improvement of research participation among underrepresented groups, ultimately reducing health disparities and improving quality of life among groups commonly omitted from research recruitment and participation. Springer US 2016-11-03 2017 /pmc/articles/PMC5408035/ /pubmed/27812847 http://dx.doi.org/10.1007/s10900-016-0279-2 Text en © The Author(s) 2016 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.
spellingShingle Original Paper
Erves, Jennifer Cunningham
Mayo-Gamble, Tilicia L.
Malin-Fair, Alecia
Boyer, Alaina
Joosten, Yvonne
Vaughn, Yolanda C.
Sherden, Lisa
Luther, Patrick
Miller, Stephania
Wilkins, Consuelo H.
Needs, Priorities, and Recommendations for Engaging Underrepresented Populations in Clinical Research: A Community Perspective
title Needs, Priorities, and Recommendations for Engaging Underrepresented Populations in Clinical Research: A Community Perspective
title_full Needs, Priorities, and Recommendations for Engaging Underrepresented Populations in Clinical Research: A Community Perspective
title_fullStr Needs, Priorities, and Recommendations for Engaging Underrepresented Populations in Clinical Research: A Community Perspective
title_full_unstemmed Needs, Priorities, and Recommendations for Engaging Underrepresented Populations in Clinical Research: A Community Perspective
title_short Needs, Priorities, and Recommendations for Engaging Underrepresented Populations in Clinical Research: A Community Perspective
title_sort needs, priorities, and recommendations for engaging underrepresented populations in clinical research: a community perspective
topic Original Paper
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5408035/
https://www.ncbi.nlm.nih.gov/pubmed/27812847
http://dx.doi.org/10.1007/s10900-016-0279-2
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