Cited by 6Ethics in Clinical ResearchStatistical Methods in Clinical TrialsCultural Competency in Health Care

Racial and Ethnic Minority Patient Participation in N-of-1 Trials: Perspectives of Healthcare Providers and Patients

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Marrast, Lyndonna, Conigliaro, Joseph, Chan, Camille, Kim, Eun Ji, Duer-Hefele, Joan, Diefenbach, Michael A, Davidson, Karina W·2021·Personalized Medicine

Abstract

Aim: Patients from racial and ethnic minority backgrounds in the USA have historically been under-represented in research trials. Understanding their viewpoints regarding participation in N-of-1 trials is imperative as we design and implement these studies. Materials & methods: We conducted six focus groups of racial and ethnic minority patients (n = 25) and providers (n = 9). We used content analysis to identify themes. Results: Our results noted the importance of considering family members in N-of-1 trial recruitment and participation, patients’ desire for education as a design feature, for ‘lifestyle’ changes as a treatment option and for use of nonevidence-based treatments in the design of future N-of-1 trials. Conclusion: Personalized trials have the potential to change the way we deliver primary care and improve disparities for minorities.

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  • Present-day challenges such as language barriers, cultural differences and a lack of cultural competence can make it difficult for researchers to rebuild trust and establish clear communication with potential participants.

    “Beyond these historical issues, present-day challenges such as language barriers, cultural differences and a lack of cultural competence can make it difficult for researchers to effectively rebuild trust and establish clear communication with potential participants [14–17].”

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Authors
Marrast, L., Conigliaro, J., Chan, C., Kim, E. J., Duer-Hefele, J., Diefenbach, M. A., & Davidson, K. W.
Affiliations
Feinstein Institute for Medical Research (US)
Venue
Personalized Medicine
Published
2021-05-28
Volume
18
Issue
4
Pages
347-359
ISSN
  • 1741-0541 (ISSN-L)
  • 1744-828X
OpenAlex
W3165564203
Cited by
6
References
50
Citations by year
2025: 4 · 2023: 1 · 2021: 1
FWCI
0.43
Type
journal article
Language
en
Open access
Locations
  • Personalized Medicine (publishedVersion)
  • PubMed Central (publishedVersion)
  • PubMed (publishedVersion)
Funders
  • National Library of Medicine of the National Institutes of Health (R01LM012836-03S1)
  • Behavioral and Sleep Medicine (BSM) PRIDE (R25HL105444)
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
  • Physical Sciences › Mathematics › Statistics and Probability › Statistical Methods in Clinical Trials
  • Social Sciences › Sociology and Political Science › Cultural Competency in Health Care
Keywords
N-of-1 trials, racial and ethnic minority patients, underrepresentation in clinical trials, patient perspectives, healthcare provider perspectives, trial recruitment, health disparities, patient education, lifestyle intervention, primary care
MeSH terms
Ethnic and Racial Minorities, Ethnicity, Health Personnel, Humans, Minority Groups, Patient Participation

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