Associations Between Race/Ethnicity, Language, and Enrollment on Cancer Research Studies

Abstract

Purpose The objective of this study was to determine whether differences in patients’ race/ethnicity, preferred language, and other factors were associated with patient enrollment in oncology research studies. Patients and Methods We conducted a retrospective cross-sectional analysis of all adults (>18 and ≤90) seen at a large, metropolitan cancer center from 2005 to 2015, examining if enrollment to a research study, varied by race/ethnicity, preferred language, comorbidities, gender, and age. Results A total of 233 604 patients were available for initial analysis. Of these, 93 278 (39.9%) were enrolled in a research protocol (therapeutic and non-therapeutic studies). Patients who self-reported their race/ethnicity as Native, Other, Unknown, or Refuse to Answer were less likely to be enrolled on a study. Patients with one or more comorbidities, and those whose preferred language was English, were more likely to be enrolled on a research study. A logistic regression model showed that, although Non-Hispanic Black patients were more likely to have one or more comorbidities and had a higher proportion of their subset selecting English as their preferred language, they were less likely to be enrolled on a study, than our largest population, Non-Hispanic/White patients. Conclusions We identified differences in research study enrollment based on preferred language, and within race/ethnicity categories including Native-Populations, Other, Unknown or Refuse to Answer compared to Non-Hispanic/White patients. We also highlighted the lower odds of enrollment among Non-Hispanic/Black patients, in the setting of factors such as comorbidities and English language preference, which were otherwise found to be positive predictors of enrollment. Further investigation is needed to design targeted interventions to reduce disparities in oncology research study enrollment, with particular focus on language diversity.

Disparities in clinical trial enrollment at a Canadian comprehensive cancer center: A 15‐year retrospective study

“…2006 to 2016 (N = 19,453) found that patients with a preferred language other than English were over 50% less likely to participate in a CT. 46 Similarly, a retrospective cross-sectional analysis of patients seen at an NCI-designated comprehensive cancer center between 200-2015 (N = 233,604) found that patients with a non-English language preference had a 45% reduced odds of enrollment in a research study in adjusted analyses (OR, 0.55; 95% CI, 0.53-0.58). 47 Disparities in trial access for this population are further heightened by the requirement of English fluency as an inclusion criterion. A review of 10,000 CT protocols registered with Clin-icalTrials.gov found that the proportion of CTs with an English fluency requirement has increased from 1.7% of trials before 2000 to 9% of trials after 2010.…”

Evaluating the impact of a SIMPlified LaYered consent process on recruitment of potential participants to theStaphylococcus aureusNetwork Adaptive Platform trial: study protocol for a multicentre pragmatic nested randomised clinical trial (SIMPLY-SNAP trial)

“…This can inadvertently deprive underprivileged or marginalised sectors of society from participation in clinical research 14. Patients of minority ethnic background have been shown to be less likely to be enrolled in research studies 15 16. Greater diversity can improve generalisability of trial results by making a trial population more representative of the general population.…”