JMIR Publications

ABSTRACT

Background:

Background:

Public social networks such as Twitter offer the clinical research community a novel opportunity for identifying and engaging potential study participants based on user activity data. However, the availability of public social media data has led to new ethical challenges. Researchers have voiced the need for involving users’ perspectives in the development of ethical norms and regulations.

Objective:

Objective:

This study examined the attitudes and level of concern among the public (Twitter users and non-users) about using Twitter for monitoring social media users and their conversations with the aim of identifying and recruiting potential clinical trial participants.

Methods:

Methods:

We used two online methods for recruiting study participants: the survey was (1) advertised on Twitter (May 11–31, 2017) and (2) deployed on TurkPrime, a crowdsourcing data acquisition platform (May 23 – June 8, 2017). Eligible participants were adults (18+) who lived in the United States. People with and without Twitter accounts were included in the study.

Results:

Results:

While nearly half the respondents (N=603; 94 on Twitter and 509 on MTurk) indicated agreement that social media monitoring constitutes a form of eavesdropping that invades their privacy, over a third disagreed, and nearly one in five had no opinion. A Chi-squared test revealed a positive relationship between respondents’ general privacy concern and their average concern about internet research (P <.005). We also found associations between respondents’ Twitter literacy and their concern about the ability for researchers to monitor their Twitter activity generally for the purpose of clinical trial recruitment (P=.001), respondents’ Twitter literacy and whether they consider Twitter monitoring for clinical trial recruitment as eavesdropping (P=.000) and an invasion of privacy (P=.003). As Twitter literacy increases, so does people’s concern about researchers monitoring Twitter activity. Our data support the previously suggested use of the “nonexceptionalist methodology” for assessing social media in research insofar as social media-based recruitment in itself does not need to be considered exceptional from the participant’s perspective, while researchers should also remain mindful that some participants will find it problematic. The expressed attitudes were highly contextual, depending on additional factors that influence participant’s level of concern with social media monitoring for clinical trial participant recruitment, e.g., monitored type of information, disease or health topic of the clinical trial, nature of the entity engaged in the monitoring.

Conclusions:

Conclusions:

The results of this study suggest that the idea of minimizing the risk and maximizing the benefit should not be used to argue for not using social media monitoring on Twitter to enhance clinical trial recruitment. The data contribute to the critical dialogue with the public and support the formulation of evidence-based guidelines to assist researchers and IRB professionals using social media in clinical research recruitment. Clinical Trial: N/A