Willingness to participate in research among black patients with liver disease: A national cross‐sectional study

Abstract

In the United States, Black people are disproportionately diagnosed with hepatitis C virus (HCV) compared with White people but are under‐represented in HCV studies. In this US‐based cross‐sectional telephone survey study, we assessed willingness to participate (WTP) in health/medical research and attitudes and beliefs that may influence WTP among Black patients with HCV. Two hundred participants who had current or prior HCV diagnosis and self‐identified as Black or African American were recruited from a national HCV cohort study and an outpatient hepatology clinic. WTP responses ranged from 1 (not at all willing) to 5 (very willing). Multivariable models were used to identify factors associated with the overall mean WTP score. In addition, an open‐ended question solicited strategies to help increase research participation from the Black community. Overall, participants reported moderate WTP in research (Mean [95% Confidence Interval (CI)] = 3.78 [3.68, 3.88]). Of 13 types of research presented, participants reported lowest WTP for randomized controlled trials of medications (Mean [95% CI] = 2.31 [2.11, 2.50]). The initial multivariable model identified higher subjective knowledge of research as positively associated with WTP (Parameter estimate [95% CI] = 0.15 [0.02, 0.27]). Sensitivity analyses also identified higher perceived benefits of research as an additional factor associated with WTP. Qualitative findings indicate that greater community‐based outreach efforts would increase accessibility of research opportunities. When given the opportunity to participate, Black participants with HCV reported moderate WTP in health/medical research. Research sponsors and investigators should employ community‐based outreach to expand access and awareness of research opportunities.

Implementing pragmatic clinical trials in hepatology

“…As a result, it can be challenging to recruit patients from rural areas, racial and ethnic minorities, and women. [28] A pragmatic trial reduces the barriers to participation, improving diversity and generalizability.…”

“…However, they also have the unintended effect of precluding involvement in trials by patients without transportation and those with inflexible obligations to their job and family. As a result, it can be challenging to recruit patients from rural areas, racial and ethnic minorities, and women 28 . A pragmatic trial reduces the barriers to participation, improving diversity and generalizability.…”