Online Research Participant Communication: Balancing Benefits and Risks

Abstract

Online communication has emerged as an important vehicle for participant interaction during the course of clinical research. At the same time, such communication has been identified as a source of risks both for participants and the scientific integrity of clinical trials. Although strategies for mitigating these risks have become a focus in the research community, missing from the discussion has been a sustained and sympathetic effort to understand the various benefits of online communication for participants themselves. In this article, we provide a taxonomy of the benefits of online communication for participants and argue that attempts to mitigate the risks of online communication by discouraging or placing limits on such communication are generally unadvisable. Instead, we advance a context-sensitive approach that emphasizes education and several actionable recommendations for preserving the benefits of online participant communities while mitigating the risks.