JMIR Publications

ABSTRACT

Background:

Social media platforms are increasingly used to recruit patients for clinical studies. Yet, patients’ attitudes regarding social media recruitment are underexplored.

Objective:

This mixed-methods study assesses predictors of the acceptance of social media recruitment among Hepatitis B patients, a patient population that is considered particularly vulnerable in this context.

Methods:

Employing a mixed-methods approach, the hypotheses for our survey were developed based on a qualitative interview study with six Hepatitis B patients and 30 multidisciplinary experts. For the paper-based cross-sectional survey, we recruited participants from three clinical centres in Germany. Adult patients capable of judgement with a Hepatitis B diagnosis who understand German and visited one of the three study centres during the data collection period were eligible to participate. Data analysis was conducted in SPSS 28, including descriptive statistics and regression analysis.

Results:

Based on the results of the qualitative interview analysis, we hypothesized that six factors were associated with acceptance of social media recruitment: Using social media in the context of Hepatitis B (H1), digital literacy (H2), interest in clinical studies (H3), trust in non-medical (H4a) and medical information sources (H4b), perceiving the Hepatitis B diagnosis as a secret (H5a), attitudes towards data privacy in the social media context (H5b), and perceived stigma (H6). Regression analysis revealed that the higher the social media use for Hepatitis B (H1), the higher the interest in clinical studies (H3), the more trust in non-medical information sources (H4a), and the less secrecy around a Hepatitis B diagnosis (H5a), the higher the acceptance of social media as a recruitment tool for clinical Hepatitis B studies.

Conclusions:

This mixed-methods study provides the first quantitative insights into social media acceptance for clinical study recruitment among Hepatitis B patients. The study was limited to the German setting and Hepatitis B patients but sets out to be a reference point for future studies assessing the attitudes towards and acceptance of social media recruitment for clinical studies. Such empirical inquiries can facilitate the work of researchers designing clinical studies as well as ethics review boards in balancing the risks and benefits of social media recruitment in a context-specific manner.