Rapid Creation of an Online Discussion Space (r/nipah) During a Serious Disease Outbreak: Observational Study

Abstract

Background During health emergencies, the people within affected communities ask many questions at a time when professional medics and health agencies are overstretched and struggling to cope. Our previous research has shown that, during the 2014-2015 West Africa Ebola crisis, volunteer-moderated online discussion forums were able to provide peer-to-peer reliable, trustworthy, and well-managed information. We speculated that with the right mix of epistemic and experiential knowledge, such a discussion forum could be set up rapidly during a future serious disease outbreak. Objective The aim of this study was to set up a peer-to-peer health information exchange forum within the shortest time possible after the emergence of a real outbreak of a serious infectious disease. An outbreak of Nipah virus in Kerala, India, in May 2018 provided the opportunity to test our theories. Methods We initiated a Nipah virus discussion forum on the platform Reddit, recruiting volunteer moderators from within the existing Reddit community. This facilitated posts and comments to the forum from genuine Reddit users. We gathered and analyzed data on the number of posts, comments, page views, and subscribers during the period of May 24 to June 23, 2018, by using the data analysis tools embedded in the Reddit platform. Results We were able to set up a functioning health information exchange platform by May 24, 2018, within two weeks of the index case and one week of the official World Health Organization verification of a Nipah virus outbreak. Over the following five weeks, the forum received a steady flow of traffic including posts (36) and comments (21) submitted, page views (840), and subscribers (33). On the busiest day, 368 page views were recorded. The forum provided information in the languages spoken in the outbreak region as well as in English on how the virus spreads, symptoms of the disease, and how to take measures to avoid contracting it. Information on government helpline numbers and frequently asked questions was also provided to the community at risk. Conclusions The delivery of a fully functional discussion forum within a short space of time during an actual health emergency demonstrates that our suggestion is fully practical. Our theory that Reddit could provide a suitable platform to host such a forum was upheld. This offers great potential for public health communication during future serious disease outbreaks.