Reasons for declining participation in inpatient research among historically minoritized racial and ethnic communities: A scoping review

Background: To promote equitable recruitment for studies conducted in the inpatient hospital setting, we sought to characterize reasons why individuals, both from historically minoritized racial and ethnic groups and the broader patient population, refuse participation in clinical trials within inpa...

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Main Authors: Poyani Bavishi, Alyssa A. Grimshaw, Oscar F. Rojas Perez, Brian D. Kiluk, E. Jennifer Edelman
Format: Article
Language:English
Published: Elsevier 2024-12-01
Series:Contemporary Clinical Trials Communications
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Online Access:http://www.sciencedirect.com/science/article/pii/S2451865424001339
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author Poyani Bavishi
Alyssa A. Grimshaw
Oscar F. Rojas Perez
Brian D. Kiluk
E. Jennifer Edelman
author_facet Poyani Bavishi
Alyssa A. Grimshaw
Oscar F. Rojas Perez
Brian D. Kiluk
E. Jennifer Edelman
author_sort Poyani Bavishi
collection DOAJ
description Background: To promote equitable recruitment for studies conducted in the inpatient hospital setting, we sought to characterize reasons why individuals, both from historically minoritized racial and ethnic groups and the broader patient population, refuse participation in clinical trials within inpatient settings. Methods: An exhaustive search of the literature was conducted in Cochrane Library, Google Scholar, Embase, MEDLINE, PubMed, Scopus, and Web of Science databases to find relevant articles published from the inception of each database to April 30, 2023. Studies recruiting patients during their inpatient stay and reporting reasons for refusing participation in clinical trials met the inclusion criteria. Results: The search resulted in 2264 citations, of which 22 were included. Fourteen did not report data related to race, while 19 reported no ethnicity data. Reasons for refusal across trials included study burden and inconvenience (n = 16), transportation and logistical issues (n = 13), lack of interest in research (n = 12), and refusal to be randomized (n = 10). Prominent concepts included the importance of incorporating social support systems in consenting processes, lack of efforts to include data or recruitment efforts for individuals from minoritized groups, and physician involvement in recruitment. Discussion: To enhance participation among historically minoritized communities in clinical trials, greater efforts must be made to collect demographic information and document refusal reasons to inform future recruitment methods. Strategies include proactively accounting for culture and language differences in study design and recruitment and intentionally engaging social support networks. Limiting study burden and logistics and optimizing collaborations between clinical and research teams would promote accessibility and foster patient trust.
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spelling doaj-art-614b0169a8d84a0bbabd49a05536bb382025-08-20T02:49:41ZengElsevierContemporary Clinical Trials Communications2451-86542024-12-014210138610.1016/j.conctc.2024.101386Reasons for declining participation in inpatient research among historically minoritized racial and ethnic communities: A scoping reviewPoyani Bavishi0Alyssa A. Grimshaw1Oscar F. Rojas Perez2Brian D. Kiluk3E. Jennifer Edelman4Yale School of Public Health, New Haven, CT, USA; Montefiore Medical Center, New York City, NY, USA; Corresponding author. 3331 Bainbridge Avenue, Bronx, NY, 10467, USA.Harvey Cushing/John Hay Whitney Medical Library, Yale University, New Haven, CT, USADepartment of Psychiatry, Yale School of Medicine, New Haven, CT, USADepartment of Psychiatry, Yale School of Medicine, New Haven, CT, USADepartment of Internal Medicine and Yale Program in Addiction Medicine, Yale School of Medicine, and Yale Center for Interdisciplinary Research on AIDS, Yale School of Public Health, New Haven, CT, USABackground: To promote equitable recruitment for studies conducted in the inpatient hospital setting, we sought to characterize reasons why individuals, both from historically minoritized racial and ethnic groups and the broader patient population, refuse participation in clinical trials within inpatient settings. Methods: An exhaustive search of the literature was conducted in Cochrane Library, Google Scholar, Embase, MEDLINE, PubMed, Scopus, and Web of Science databases to find relevant articles published from the inception of each database to April 30, 2023. Studies recruiting patients during their inpatient stay and reporting reasons for refusing participation in clinical trials met the inclusion criteria. Results: The search resulted in 2264 citations, of which 22 were included. Fourteen did not report data related to race, while 19 reported no ethnicity data. Reasons for refusal across trials included study burden and inconvenience (n = 16), transportation and logistical issues (n = 13), lack of interest in research (n = 12), and refusal to be randomized (n = 10). Prominent concepts included the importance of incorporating social support systems in consenting processes, lack of efforts to include data or recruitment efforts for individuals from minoritized groups, and physician involvement in recruitment. Discussion: To enhance participation among historically minoritized communities in clinical trials, greater efforts must be made to collect demographic information and document refusal reasons to inform future recruitment methods. Strategies include proactively accounting for culture and language differences in study design and recruitment and intentionally engaging social support networks. Limiting study burden and logistics and optimizing collaborations between clinical and research teams would promote accessibility and foster patient trust.http://www.sciencedirect.com/science/article/pii/S2451865424001339Hospital MedicineSocioeconomic Disparities in HealthPatient SelectionClinical Trials as TopicPatient Participation
spellingShingle Poyani Bavishi
Alyssa A. Grimshaw
Oscar F. Rojas Perez
Brian D. Kiluk
E. Jennifer Edelman
Reasons for declining participation in inpatient research among historically minoritized racial and ethnic communities: A scoping review
Contemporary Clinical Trials Communications
Hospital Medicine
Socioeconomic Disparities in Health
Patient Selection
Clinical Trials as Topic
Patient Participation
title Reasons for declining participation in inpatient research among historically minoritized racial and ethnic communities: A scoping review
title_full Reasons for declining participation in inpatient research among historically minoritized racial and ethnic communities: A scoping review
title_fullStr Reasons for declining participation in inpatient research among historically minoritized racial and ethnic communities: A scoping review
title_full_unstemmed Reasons for declining participation in inpatient research among historically minoritized racial and ethnic communities: A scoping review
title_short Reasons for declining participation in inpatient research among historically minoritized racial and ethnic communities: A scoping review
title_sort reasons for declining participation in inpatient research among historically minoritized racial and ethnic communities a scoping review
topic Hospital Medicine
Socioeconomic Disparities in Health
Patient Selection
Clinical Trials as Topic
Patient Participation
url http://www.sciencedirect.com/science/article/pii/S2451865424001339
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