Participatory Disease Surveillance: Engaging Communities Directly in Reporting, Monitoring, and Responding to Health Threats.

Mark S Smolinski,Marlo Libel,Adam W Crawley,Tanvi Jayaraman,Jennifer M Olsen

doi:10.2196/publichealth.7540

Abstract

BackgroundSince 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.ObjectiveThis landscape provides an overview of participatory disease surveillance systems in the IWOPS network and orients readers to this growing field of practice.MethodsAuthors 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.ResultsThere 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.ConclusionsParticipatory disease surveillance is a promising method to complement both traditional, facility-based surveillance and newer digital epidemiology systems.

Highlights

Finding outbreaks faster no matter where they first appear on the planet is a continuous challenge
While participatory epidemiology originated within the animal health community as a way to monitor health events in rural areas where surveillance resources are often limited, one of the first uses of crowdsourcing for public health surveillance was initiated in 2003 in the Netherlands by Science in Action [1,2,3,4,5]
A loose collaboration of participatory disease surveillance system creators and stewards have convened periodically as the International Workshop on Participatory Surveillance (IWOPS), which met for the first time in 2012 in San Francisco, again in 2013 in Amsterdam and most recently in 2016 in Newcastle, Australia

Summary

Introduction

Finding outbreaks faster no matter where they first appear on the planet is a continuous challenge. New approaches to detect and monitor disease threats have emerged to supplement “traditional” disease surveillance approaches such as indicatorand facility-based surveillance (eg, notifiable diseases and laboratory tests) One of these novel approaches leverages digital connectivity to engage the public in “actively” providing public health practitioners with data that can be aggregated and analyzed for a variety of purposes including monitoring disease trends, identifying risk factors, and detection of outbreaks. This active approach of direct engagement is often referred to as participatory disease surveillance. 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

Methods

Results

Conclusion