Lyndonna Marrast, Joseph Conigliaro, Camille Chan, Eun Ji Kim, Joan Duer-Hefele, Michael A Diefenbach, Karina W Davidson
{"title":"Racial and ethnic minority patient participation in N-of-1 trials: perspectives of healthcare providers and patients.","authors":"Lyndonna Marrast, Joseph Conigliaro, Camille Chan, Eun Ji Kim, Joan Duer-Hefele, Michael A Diefenbach, Karina W Davidson","doi":"10.2217/pme-2020-0166","DOIUrl":null,"url":null,"abstract":"<p><p><b>Aim:</b> 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. <b>Materials & methods:</b> We conducted six focus groups of racial and ethnic minority patients (n = 25) and providers (n = 9). We used content analysis to identify themes. <b>Results:</b> 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. <b>Conclusion:</b> Personalized trials have the potential to change the way we deliver primary care and improve disparities for minorities.</p>","PeriodicalId":19753,"journal":{"name":"Personalized medicine","volume":"18 4","pages":"347-359"},"PeriodicalIF":1.7000,"publicationDate":"2021-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8242982/pdf/pme-18-347.pdf","citationCount":"2","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Personalized medicine","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.2217/pme-2020-0166","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2021/5/28 0:00:00","PubModel":"Epub","JCR":"Q3","JCRName":"PHARMACOLOGY & PHARMACY","Score":null,"Total":0}
引用次数: 2
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.
期刊介绍:
Personalized Medicine (ISSN 1741-0541) translates recent genomic, genetic and proteomic advances into the clinical context. The journal provides an integrated forum for all players involved - academic and clinical researchers, pharmaceutical companies, regulatory authorities, healthcare management organizations, patient organizations and others in the healthcare community. Personalized Medicine assists these parties to shape thefuture of medicine by providing a platform for expert commentary and analysis.
The journal addresses scientific, commercial and policy issues in the field of precision medicine and includes news and views, current awareness regarding new biomarkers, concise commentary and analysis, reports from the conference circuit and full review articles.