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Diversity of Participation in Clinical Trials and Influencing Factors: Findings from the Health Information National Trends Survey 2020

Abstract

Background

Clinical trial diversity is critical to advance health and health equity. Research addressing the discrepancy between goals of achieving clinical trial diversity and realities of study enrollment remains underdeveloped.

Objective

This study aims to examine the association between race/ethnicity and clinical trial invitation, participation, knowledge, and sources of influence on clinical trial participation.

Design and Participants

A cross-sectional, observational study using nationally representative data from 3689 US adults (≥ 18 years of age) who responded to the Health Information National Trends Survey fielded from February 24 to June 15, 2020.

Main Measures

Primary outcomes included clinical trial invitation, participation, knowledge, and sources of influence on participation. The independent variable of interest is self-reported race/ethnicity.

Key Results

Respondents identifying as non-Hispanic Black (relative to non-Hispanic White) had higher odds of being invited into a clinical trial (adjusted odds ratio: 2.0, 95% confidence interval (CI): 1.1, 3.7), but no differences in odds of participation were observed by race/ethnicity. Respondents from all races/ethnicities reported that personal healthcare providers were the most trusted source of clinical trial information. Hispanic (marginal effect (ME): − 0.09; 95% CI: − 0.16, − 0.03), non-Hispanic Black (ME: − 0.11; 95% CI: − 0.18, − 0.04), and non-Hispanic other (ME: − 0.11; 95% CI: − 0.19, − 0.02) respondents had lower odds than non-Hispanic White respondents of saying they would be influenced “a lot” by their doctor encouraging participation. Non-Hispanic Black respondents had significantly lower odds (relative to non-Hispanic White) of indicating family encouragement would influence their clinical trial participation decision “a lot” (ME: − 0.09; 95%: CI: − 0.14, − 0.03).

Conclusion

While personal healthcare providers were trusted sources of information, racial/ethnic minority populations noted lower odds of clinical trial participation influence from providers and family. Thus, it is imperative for the healthcare, government, and industry organizations to build trust in medicine and science.

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Acknowledgements

Preparation of this manuscript was supported by the Robert Wood Johnson Foundation (Harold Amos Medical Faculty Development Program ID# 76236,JJJ), the National Institute of Diabetes and Digestive and Kidney Diseases (K23DK117041, JJJ), and the National Cancer Institute (K08CA245208, TSN) of the National Institutes of Health. The study sponsors had no involvement in the collection, analysis, or interpretation of data; in the writing of this manuscript; or in the decision to submit the manuscript for publication.

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Correspondence to Daniel M. Walker PhD, MPH.

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Walker, D.M., Swoboda, C.M., Shiu-Yee, K. et al. Diversity of Participation in Clinical Trials and Influencing Factors: Findings from the Health Information National Trends Survey 2020. J GEN INTERN MED (2022). https://doi.org/10.1007/s11606-022-07780-2

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KEY WORDS

  • clinical trials
  • diversity
  • NCI
  • HINTS
  • health equity