scholarly journals 3392 Tapping into Community Insight and Lived Experience to Inform, Guide and Direct Translational Science Initiatives

2019 ◽  
Vol 3 (s1) ◽  
pp. 95-95
Author(s):  
Miles McNeeley ◽  
Katrina Kubicek ◽  
Lourdes Baezconde-Garbanati ◽  
Karen D. Lincoln ◽  
Michele Kipke
Keyword(s):  
African American ◽  
Los Angeles ◽  
Clinical Research ◽  
Community Engagement ◽  
Community Advisory Board ◽  
Translational Science ◽  
Community Members ◽  
Black African ◽  
African American Communities ◽  
Community Input

OBJECTIVES/SPECIFIC AIMS: This study aims to describe adaptability in methods used to apply community input to programming within the field of translational science. The outcomes of community informed programming include opportunities for innovative projects and approaches, and better responsiveness to community needs. It is anticipated that this will result in greater community involvement in research, moving towards greater health equity. METHODS/STUDY POPULATION: The SC CTSI is situated in urban Los Angeles, one of the most diverse communities in the world. Eight SC CTSI Community Engagement Core initiatives that employ community partnership are illustrated. The activities include social marketing campaigns for cervical cancer prevention; use of community-embedded research ambassadors to increase scientific literacy in Latino and Black/African-American communities; use of innovative technologies to educate pediatric patients and families about clinical research; working with the entertainment industry to promote clinical research in popular television shows; a community advisory board that is tailored and embedded in each CSTA core group; a community based research dissemination program; an ad-hoc community advisory group assembled to adapt a research 101 curriculum for Black/African-American communities; and a series of listening sessions conducted throughout Los Angeles. RESULTS/ANTICIPATED RESULTS: Integration of community voices provide direction for future planning, programming and execution of all referenced initiatives. Ultimately, the goal for these discussions with community members is to develop innovative approaches to CTSA programming. DISCUSSION/SIGNIFICANCE OF IMPACT: Racial and ethnic minorities continue to experience underrepresentation in clinical research trials. CTSAs have been tasked with addressing barriers that have historically led to disparities in research participation, and by extension, the effectiveness of medical interventions in diverse populations. Community input is an invaluable source for knowledge and innovative ideas in how to increase involvement in various aspects of the research process, including dissemination, recruitment and enrollment in clinical trials. CTSAs have increasingly augmented Community Engagement programs within their respective cores to address population disparities. The approaches used to engage communities require an element of fluidity and flexibility, and a reliance on the input of community members, in order to maintain relevant and desired community engagement practices.

scholarly journals Earning the Trust of African American Communities to Increase Representation in Dementia Research

2020 ◽  
Vol 30 (Suppl) ◽  
pp. 719-734
Author(s):  
Elena Portacolone ◽  
Nynikka R. Palmer ◽  
Peter Lichtenberg ◽  
Catherine M. Waters ◽  
Carl V. Hill ◽  
...  
Keyword(s):  
Older Adults ◽  
African American ◽  
Focus Groups ◽  
Community Advisory Board ◽  
New Paradigm ◽  
Major Barrier ◽  
Black African ◽  
Dementia Research ◽  
African American Communities ◽  
African American Older Adults

Black/African American populations are un­derrepresented as participants in dementia research. A major barrier to participation of African American older adults in dementia research is a tendency to distrust research institutions owing to both historical and contemporary racism. Building on the Ford framework, the objective of our study was to examine factors that influence participa­tion in dementia research among African American older adults and caregivers, with an emphasis on understanding factors related to trust. Data were collected during January 2019 and March 2020 from 10 focus groups with African American older adults (n=91), 5 focus groups with caregiv­ers (n=44), and interviews with adminis­trators of community-based organizations (n=11), and meetings with our Community Advisory Board. Inductive/deductive con­tent analysis was used to identify themes. The results identified an overall tension be­tween distrust of researchers and a compel­ling desire to engage in dementia research. This overarching theme was supported by six themes that provided insights about the multiple layers of distrust, as well as expectations about the appropriate conduct of researchers and academic institutions. Strong commitment to the community was identified as a priority. The findings suggest that a paradigm shift is needed to increase the representation of African Americans in dementia research. In this new paradigm, earning the trust of African American com­munities becomes a systemic endeavor, with academic, state, and national institutions deeply committed to earning the trust of African American communities and guiding researchers in this endeavor. The findings also generated actionable recommendations to help improve representation of African American older adults in dementia research.Ethn Dis. 2020;30(Suppl 2):719-734; doi:10.18865/ed.30.S2.719

scholarly journals Earning the Trust of African American Communities to Increase Representation in Dementia Research

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 878-878
Author(s):  
Elena Portacolone ◽  
Nynikka Palmer ◽  
Peter Lichtenberg ◽  
Catherine Waters ◽  
Carl Hill ◽  
...  
Keyword(s):  
Older Adults ◽  
African American ◽  
Focus Groups ◽  
Community Advisory Board ◽  
New Paradigm ◽  
Major Barrier ◽  
Black African ◽  
Dementia Research ◽  
African American Communities ◽  
African American Older Adults

Abstract Black/African American populations are underrepresented as participants in dementia research. A major barrier to participation of African American older adults in dementia research is a tendency to distrust research institutions owing to a legacy of racism. Building on the Ford framework, the objective of our study was to examine factors that influence participation in dementia research among African American older adults and caregivers, with an emphasis on understanding factors related to trust. Data were collected from 10 focus groups with African American older adults (n=91), 5 focus groups with caregivers (n=44), and interviews with administrators of community-based organizations (n=11), and meetings with our Community Advisory Board. Inductive/deductive content analysis was used to identify themes. The results identified an overall tension between distrust of researchers and a compelling desire to engage in dementia research. This overarching theme was supported by six themes that provided insights about the multiple layers of distrust, as well as expectations about the appropriate conduct of researchers and academic institutions. Strong commitment to the community was identified as a priority. The findings suggest that a paradigm shift is needed to increase the representation of African Americans in dementia research. In this new paradigm, earning the trust of African American communities becomes a systemic endeavor, with academic, state and national institutions deeply committed to earning the trust of African American communities and guiding researchers in this endeavor. The findings also generated actionable recommendations to help improve representation of African American older adults in dementia research.

scholarly journals Exploring the potential role of community engagement in evaluating clinical and translational science grant proposals

2018 ◽  
Vol 2 (3) ◽  
pp. 139-146 ◽  
Author(s):  
Jeffrey W. Treem ◽  
Margaret Schneider ◽  
Robynn L. Zender ◽  
Dara H. Sorkin
Keyword(s):  
Community Engagement ◽  
Potential Role ◽  
Review Process ◽  
Translational Science ◽  
Community Members ◽  
Grant Proposals ◽  
Stage Process ◽  
Stage 1 ◽  
The University

IntroductionThis study explored the effects of integrating community members into the evaluation of clinical and translational science grants.MethodsThe University of California, Irvine Institute for Clinical and Translational Sciences (ICTS) engaged 21 community reviewers alongside scientific reviewers in a 2-stage process of evaluating research proposals. In Stage 1 reviewers scored proposals, and during Stage 2 two study sections convened: one a mix of community reviewers and scientific reviewers, and one only engaging scientific reviewers. In total, 4 studies were discussed by both study sections.ResultsComparisons of reviews revealed little difference between ratings of community reviewers and those of scientific reviewers, and that community reviewers largely refrained from critiquing scientific or technical aspects of proposals.ConclusionsThe findings suggest that involving community reviewers early in the grant cycle, and exposing them to the entirety of the review process, can bolster community engagement without compromising the rigor of grant evaluations.

scholarly journals The Significance of Strategic Community Engagement in Recruiting African American Youth & Families for Clinical Research

2011 ◽  
Vol 21 (2) ◽  
pp. 273-280 ◽  
Author(s):  
Alfiee M. Breland-Noble ◽  
◽  
Carl C. Bell ◽  
Antoinette Burriss ◽  
H. Kathy Poole
Keyword(s):  
African American ◽  
Clinical Research ◽  
Community Engagement ◽  
African American Youth

scholarly journals Complexity Beyond Intersections: Race, Class, and Neighborhood Disadvantage among African American Muslims

2018 ◽  
Vol 6 (2) ◽  
pp. 98-106 ◽  
Author(s):  
Pamela Prickett
Keyword(s):  
African American ◽  
Los Angeles ◽  
Neighborhood Disadvantage ◽  
American Muslims ◽  
Community Members ◽  
Muslim Immigrants ◽  
American Muslim ◽  
Poor Neighborhood ◽  
Race Ethnicity ◽  
First And Second Generation

This study uses the case of African American Muslims to examine the intersection of religious inequality with other forms of disadvantage. It draws on more than six years of ethnographic and historical research in an African American Muslim community in a poor neighborhood in Los Angeles, comparing the experiences of community members with existing research on first- and second-generation Muslim immigrants. It addresses the three most prominent axes of difference between African American and immigrant Muslims—race/ethnicity, class, and neighborhood disadvantage—to explicate the ways in which religion may compound existing inequalities, or in some cases create new forms of difference. It also shows how identifying as native-born Americans allows African American Muslims to claim religion as a cultural advantage in certain situations. Religion is complex not only when different forms of inequality intersect but when these intersections create a different way of understanding what religion means for people of faith.

scholarly journals Highway safety in Black/African-American communities: Issues and strategies

2002 ◽  
Author(s):  
Sylvia Cordy ◽  
Kevin Raines ◽  
Judith Singletary ◽  
Rochelle Tillery-Larkin
Keyword(s):  
African American ◽  
Highway Safety ◽  
Black African ◽  
African American Communities

scholarly journals Evaluation of 3 approaches for increasing patient engagement in clinical research: Feedback from a community engagement advisory board

2018 ◽  
Vol 2 (1) ◽  
pp. 14-19 ◽  
Author(s):  
Alicia K. Matthews ◽  
Kevin Rak ◽  
Emily Anderson ◽  
Amparo Castillo ◽  
Raymond Ruiz ◽  
...  
Keyword(s):  
Clinical Research ◽  
Community Engagement ◽  
Survey Data ◽  
Research Participation ◽  
Advisory Board ◽  
Community Advisory Board ◽  
Board Members ◽  
Patient Portals ◽  
Patient Registries ◽  
Advantages And Disadvantages

IntroductionThe purpose of this study was to obtain feedback from a diverse group of community advisory board members about different clinic or hospital-based approaches to increasing research participation.MethodsMembers of an established community engagement advisory board (n=16) provided qualitative and survey data regarding attitudes and preferences for 3 hospital and clinic system strategies to recruit patients into clinical research including universal consent for research, patient registries, and patient portals.ResultsOverall, there was moderate support for each of the 3 approaches discussed. Board members described advantages and disadvantages of each method. Based on the qualitative data, universal consent was viewed as the best strategy for consenting high volumes of patients for research. However, patient registries and portals were seen as more acceptable, less-intrusive and more likely to result in higher participation rates. Survey data were consistent with qualitative findings.ConclusionsInput from community stakeholders is needed to identify strategies to enhance participation and increase diversity in clinical research. Members of our CEAB identified patient registries and portals as feasible and nonintrusive approaches to increasing research participation. Additional research is needed to confirm these findings and to establish best practices for supporting patients in using registry approaches.

Climate Change, Justice, and Adaptation among African American Communities in the Chesapeake Bay Region

2012 ◽  
Vol 4 (1) ◽  
pp. 34-47 ◽  
Author(s):  
Michael Paolisso ◽  
Ellen Douglas ◽  
Ashley Enrici ◽  
Paul Kirshen ◽  
Chris Watson ◽  
...  
Keyword(s):  
Climate Change ◽  
African American ◽  
Chesapeake Bay ◽  
Community Members ◽  
Adaptation Capacity ◽  
Community Adaptation ◽  
Wide Range ◽  
Holistic Understanding ◽  
African American Communities

Abstract In this paper, the authors present results from a study of climate change and community adaptation, focusing on two African American communities on the Eastern Shore of the Chesapeake Bay. These two communities are representative of small, resource-poor communities that are particularly prone to increased flooding, storms, and erosion accompanying climate change. The authors frame their research within a focus on distributive and procedural justice, including considerations of the role of adaptation capacity and vulnerability. They use methods from cognitive–environmental anthropology and psychometrics to ground a participatory and multidisciplinary approach that emphasizes community participation and the sharing of scientific and program information on climate change and adaptation. Their results suggest that community members have a holistic understanding of climate change, recognize a wide range of potential community and individual impacts, face specific vulnerabilities, and are organized through their churches to engage in efforts to reduce the impacts of increased flooding and storms on their communities.

Sign in / Sign up

Export Citation Format

Share Document