Lyndonna Marrast1,2, Joseph Conigliaro1,2, Camille Chan2, Eun Ji Kim1,2, Joan Duer-Hefele3, Michael A Diefenbach2, Karina W Davidson3. 1. Department of Medicine, Division of General Internal Medicine, The Donald & Barbara Zucker School of Medicine at Hofstra/Northwell, New Hyde Park, NY 11042, USA. 2. Institute for Health System Science, Center for Health Innovations & Outcomes Research, Feinstein Institutes for Medical Research, Manhasset, NY 11030, USA. 3. Institute for Health System Science, Center for Personalized Health, Feinstein Institutes for Medical Research, Manhasset, NY 11030, USA.
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.
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.
Entities:
Keywords:
N-of-1 trial; focus group; personalized trial; perspectives; racial and ethnic minority populations; research participation
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