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Use of Popular Opinion Leader Models to Disseminate Information About Clinical Trials to Black Individuals With Lupus in Two US Cities
OBJECTIVE: Clinical trials for systemic lupus erythematosus (“lupus”) under enroll Black individuals despite higher disease prevalence, morbidity, and mortality among Black compared to White individuals. To begin to address this disparity, we leveraged community–academic partnerships in 2 US cities...
Autores principales: | , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Wiley Periodicals, Inc.
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10087388/ https://www.ncbi.nlm.nih.gov/pubmed/35381123 http://dx.doi.org/10.1002/acr.24889 |
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author | Arneson, Laura C. Taber, Kreager A. Williams, Jessica N. Ulysse, Sciaska N. Erickson, Daniel L. Chmiel, Joan S. Milaeger, Holly Freeman, Elmer Canessa, Patricia Song, Jing Chung, Anh H. Feldman, Candace H. Ramsey‐Goldman, Rosalind |
author_facet | Arneson, Laura C. Taber, Kreager A. Williams, Jessica N. Ulysse, Sciaska N. Erickson, Daniel L. Chmiel, Joan S. Milaeger, Holly Freeman, Elmer Canessa, Patricia Song, Jing Chung, Anh H. Feldman, Candace H. Ramsey‐Goldman, Rosalind |
author_sort | Arneson, Laura C. |
collection | PubMed |
description | OBJECTIVE: Clinical trials for systemic lupus erythematosus (“lupus”) under enroll Black individuals despite higher disease prevalence, morbidity, and mortality among Black compared to White individuals. To begin to address this disparity, we leveraged community–academic partnerships in 2 US cities (Boston and Chicago) to train popular opinion leaders (POLs) to disseminate information about clinical trials in predominantly Black communities. METHODS: The team of community and academic partners collaboratively developed a 5‐module curriculum about clinical trials, barriers, facilitators, and structural racism in research. We enrolled POLs in Boston and Chicago to participate virtually in the curriculum and assessed knowledge gained by comparing pre‐ and post‐test scores. We described the POLs' ability to disseminate information about clinical trials through their communities. RESULTS: We enrolled 19 POLs in Boston and 16 in Chicago; overall, 71% reported a lupus diagnosis, 94% were female, and 80% self‐identified as Black or African American. The program was adapted to virtual formats due to the COVID‐19 pandemic. POLs demonstrated significant improvement comparing pre/post scores for the conduct of clinical trials and history of racism in clinical research. Fifteen POLs (43%) reported their dissemination of information about clinical trials. Information reached 425 community members in Boston (90% virtually) and 1,887 in Chicago (95% virtually). CONCLUSION: By leveraging community–academic partnerships, we developed and implemented a curriculum to promote familiarity with clinical trials, leading to information dissemination by POLs in predominantly Black communities that are underrepresented in lupus clinical trials. The program successfully transitioned to a virtual model during the COVID‐19 pandemic. |
format | Online Article Text |
id | pubmed-10087388 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | Wiley Periodicals, Inc. |
record_format | MEDLINE/PubMed |
spelling | pubmed-100873882023-04-12 Use of Popular Opinion Leader Models to Disseminate Information About Clinical Trials to Black Individuals With Lupus in Two US Cities Arneson, Laura C. Taber, Kreager A. Williams, Jessica N. Ulysse, Sciaska N. Erickson, Daniel L. Chmiel, Joan S. Milaeger, Holly Freeman, Elmer Canessa, Patricia Song, Jing Chung, Anh H. Feldman, Candace H. Ramsey‐Goldman, Rosalind Arthritis Care Res (Hoboken) Theme Issue Articles: Health Disparities And Health Equity In The Rheumatic Diseases OBJECTIVE: Clinical trials for systemic lupus erythematosus (“lupus”) under enroll Black individuals despite higher disease prevalence, morbidity, and mortality among Black compared to White individuals. To begin to address this disparity, we leveraged community–academic partnerships in 2 US cities (Boston and Chicago) to train popular opinion leaders (POLs) to disseminate information about clinical trials in predominantly Black communities. METHODS: The team of community and academic partners collaboratively developed a 5‐module curriculum about clinical trials, barriers, facilitators, and structural racism in research. We enrolled POLs in Boston and Chicago to participate virtually in the curriculum and assessed knowledge gained by comparing pre‐ and post‐test scores. We described the POLs' ability to disseminate information about clinical trials through their communities. RESULTS: We enrolled 19 POLs in Boston and 16 in Chicago; overall, 71% reported a lupus diagnosis, 94% were female, and 80% self‐identified as Black or African American. The program was adapted to virtual formats due to the COVID‐19 pandemic. POLs demonstrated significant improvement comparing pre/post scores for the conduct of clinical trials and history of racism in clinical research. Fifteen POLs (43%) reported their dissemination of information about clinical trials. Information reached 425 community members in Boston (90% virtually) and 1,887 in Chicago (95% virtually). CONCLUSION: By leveraging community–academic partnerships, we developed and implemented a curriculum to promote familiarity with clinical trials, leading to information dissemination by POLs in predominantly Black communities that are underrepresented in lupus clinical trials. The program successfully transitioned to a virtual model during the COVID‐19 pandemic. Wiley Periodicals, Inc. 2022-08-23 2023-01 /pmc/articles/PMC10087388/ /pubmed/35381123 http://dx.doi.org/10.1002/acr.24889 Text en © 2022 The Authors. Arthritis Care & Research published by Wiley Periodicals LLC on behalf of American College of Rheumatology. https://creativecommons.org/licenses/by-nc/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes. |
spellingShingle | Theme Issue Articles: Health Disparities And Health Equity In The Rheumatic Diseases Arneson, Laura C. Taber, Kreager A. Williams, Jessica N. Ulysse, Sciaska N. Erickson, Daniel L. Chmiel, Joan S. Milaeger, Holly Freeman, Elmer Canessa, Patricia Song, Jing Chung, Anh H. Feldman, Candace H. Ramsey‐Goldman, Rosalind Use of Popular Opinion Leader Models to Disseminate Information About Clinical Trials to Black Individuals With Lupus in Two US Cities |
title | Use of Popular Opinion Leader Models to Disseminate Information About Clinical Trials to Black Individuals With Lupus in Two US Cities |
title_full | Use of Popular Opinion Leader Models to Disseminate Information About Clinical Trials to Black Individuals With Lupus in Two US Cities |
title_fullStr | Use of Popular Opinion Leader Models to Disseminate Information About Clinical Trials to Black Individuals With Lupus in Two US Cities |
title_full_unstemmed | Use of Popular Opinion Leader Models to Disseminate Information About Clinical Trials to Black Individuals With Lupus in Two US Cities |
title_short | Use of Popular Opinion Leader Models to Disseminate Information About Clinical Trials to Black Individuals With Lupus in Two US Cities |
title_sort | use of popular opinion leader models to disseminate information about clinical trials to black individuals with lupus in two us cities |
topic | Theme Issue Articles: Health Disparities And Health Equity In The Rheumatic Diseases |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10087388/ https://www.ncbi.nlm.nih.gov/pubmed/35381123 http://dx.doi.org/10.1002/acr.24889 |
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