Abstract and Introduction
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.
Black people living in the United States are disproportionately diagnosed with hepatitis C virus (HCV) compared with White people. Since 2011, direct-acting antiviral regimens have improved treatment efficacy and reduced treatment-related adverse events for patients with HCV.[2–12] Despite comprising 23% of the HCV-diagnosed population, Black patients made up only 2%–22% of patients enrolled in pharmaceutical industry-sponsored clinical trials of HCV direct-acting antivirals.[2–12] Low levels of participation in HCV-related health and biomedical research can make it difficult to generalize efficacy, safety and other study findings to Black people living with HCV.
Across a variety of health conditions, most prior research on racial disparities in research participation has focused on understanding willingness to participate (WTP) in health/medical research studies; however, the degree to which WTP drives actual research participation has been challenged. Prior studies have found that negative attitudes towards research,[16,17] perceived health risks,[18,19] lack of knowledge about research conduct,[17,20,21] health literacy[19,22,23] and lack of trust in doctors[16,20,24] may play a role in determining WTP in research. Lack of trust in doctors conducting research stems from historical abuses and community trauma, such as the Tuskegee syphilis study. Additional factors beyond WTP, including systemic racism, proximity to medical centres, and access to health care, limit access to and availability of research opportunities for Black people.
No prior research has been conducted with Black individuals with liver disease to understand attitudes and perceptions related to participation in health/medical research. This knowledge could enhance ways to incorporate the patient's voices into drug development and pharmaceutical industry-sponsored clinical trials. Using a national cohort of patients with current or prior HCV infection who self-identified as Black or African American, this mixed-methods study aimed to (1) evaluate WTP in various types of research; (2) assess attitudes, perceptions and other factors potentially associated with WTP in research; (3) identify factors associated with WTP in research; and (4) elicit feedback on strategies to increase Black patients participation in research.
J Viral Hepat. 2021;28(7):982-993. © 2021 Blackwell Publishing