Participatory disease surveillance: Engaging communities directly in reporting, monitoring, and responding to health threats

Abstract

Background: Since 2012, the International Workshop on Participatory Surveillance (IWOPS) has served as an informal network to share best practices, consult on analytic methods, and catalyze innovation to advance the burgeoning method of direct engagement of populations in voluntary monitoring of disease. Objective: This landscape provides an overview of participatory disease surveillance systems in the IWOPS network and orients readers to this growing field of practice. Methods: Authors reviewed participatory approaches that include human and animal health surveillance, both syndromic (self-reported symptoms) and event-based, and how these tools have been leveraged for disease modeling and forecasting. The authors also discuss benefits, challenges, and future directions for participatory disease surveillance. Results: There are at least 23 distinct participatory surveillance tools or programs represented in the IWOPS network across 18 countries. Organizations supporting these tools are diverse in nature. Conclusions: Participatory disease surveillance is a promising method to complement both traditional, facility-based surveillance and newer digital epidemiology systems.