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Abstract

Aim: To identify factors associated with willingness to participate in a COVID-19 clinical trial and reasons for and against participating. Materials & methods: We surveyed Massachusetts (MA, USA) residents online using the Dynata survey platform and via phone using random digit dialing between October and November 2021. Respondents were asked to imagine they were hospitalized with COVID-19 and invited to participate in a treatment trial. We assessed willingness to participate by asking, “Which way are you leaning” and why. We used multivariate logistic regression to model factors associated with leaning toward participation. Open-ended responses were analyzed using conventional content analysis. Results: Of 1071 respondents, 65.6% leaned toward participating. Multivariable analyses revealed college-education (OR: 1.59; 95% CI: 1.11, 2.27), trust in the healthcare system (OR: 1.32; 95% CI: 1.10, 1.58) and relying on doctors (OR: 1.77; 95% CI: 1.45, 2.17) and family or friends (OR: 1.31; 95% CI: 1.11, 1.54) to make health decisions were significantly associated with leaning toward participating. Respondents with lower health literacy (OR: 0.57; 95% CI: 0.36, 0.91) and who identify as Black (OR: 0.40; 95% CI: 0.24, 0.68), Hispanic (OR: 0.61; 95% CI: 0.38, 0.98), or republican (OR: 0.61; 95% CI: 0.38, 0.97) were significantly less likely to lean toward participating. Common reasons for participating included helping others, benefitting oneself and deeming the study low risk. Common reasons for leaning against were deeming the study high risk, disliking experimental treatments and not wanting to be a guinea pig. Conclusion: Our finding that vulnerable individuals and those with lower levels of trust in the healthcare system are less likely to be receptive to participating in a COVID-19 clinical trial highlights that work is needed to achieve a healthcare system that provides confidence to historically disadvantaged groups that their participation in research will benefit their community.

Shareable abstract

A survey among Massachusetts residents identifies factors associated with participating in COVID-19 clinical trials and the need to build trust among historically disadvantaged groups in research.

Plain language summary

What is this article about?

This article describes a survey in which respondents were asked to imagine they were hospitalized with COVID-19 and invited to participate in a study of a COVID-19 treatment. They were asked whether they would participate and why.

What were the results?

Of the 1071 respondents, 65.6% leaned toward participating. Respondents with a college education, greater trust in the healthcare system and who rely on others to make healthcare decisions were more likely to participate. Respondents who identified as Black, Hispanic or republican and those who needed help reading medical materials were less likely to participate. Reasons for participating included helping others, benefitting oneself and deeming the study low risk. Reasons for not participating were deeming the study high risk, disliking experimental treatments and not wanting to be a guinea pig.

What do the results mean?

Historically disadvantaged groups were less likely to participate in a possible clinical trial. Work is needed to create a healthcare system that provides confidence to historically disadvantaged groups that if they take part in research, it will benefit their community.

Supplementary Material

File (appendix 1.docx)
File (appendix 2.docx)

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