Characterization of COVID-19 vaccine clinical trial discussions on the social question-and-answer site Quora

INTRODUCTION: Throughout the COVID-19 pandemic, underserved populations, such as racial and ethnic minorities, were disproportionately impacted by illness, hospitalization, and death. Equity in clinical trials means that the participants in clinical trials represent the people who are most likely to have the health condition and need the treatment that the trial is testing. Infodemiology approaches examining user conversations on social media platforms have the potential to elucidate specific barriers and challenges related to clinical trial participation, including among racial and ethnic minority populations. MATERIALS AND METHODS: The study retrospectively collected and analyzed user question and answer posts from Quora in October 2021 using an inductive content coding approach. We also examined user’s publicly available profile metadata to identify racial and ethnic minority users to capture their experiences, attitudes, topics, and discussions of barriers to COVID-19 vaccine trials. RESULTS: A total of 1073 questions and 7479 answers were collected. A total of 763 questions and 2548 answers were identified as related to COVID-19 vaccine clinical trials. The majority of these online interactions focused on asking questions and sharing knowledge and opinions about COVID-19 vaccine trials, including major topics related to: (a) interpreting whether clinical trial results could be trusted; (b) questions about vaccine efficacy and safety; (c) understanding trial design, regulatory considerations, and vaccine platforms; and (d) questions about trial enrollment, length, and adequate representation. Additionally, four major barriers discussed included: (i) disagreement from users regarding whether clinical trials require representation from different racial and ethnic minorities; (ii) concerns regarding the safety of trials when participating; (iii) lack of knowledge on how to participate in a trial; and (iv) questions of whether participants could withdraw from a trial to access an approved COVID-19 vaccine. CONCLUSIONS: Our study found active user discussions related to COVID-19 vaccine clinical trials on Quora, including those specific to minority health topics and those posted by a smaller group of self-identified racial and ethnic minority online users. Results from this study can help identify barriers to participation among the general public and underrepresented groups while also supporting the design of future outreach strategies to help with recruitment and inclusive trial participation. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13063-023-07837-5.