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

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.

Estimating foot‐and‐mouth disease (FMD) prevalence in central Myanmar: Comparison of village headman and farmer disease reports with serological findings

“…A comparison of the three models described shows that modelling the proportion of animals which have NSP FMDV ELISA results (corrected OD) over 50% inhibition is a better use of the data than modelling the average corrected OD ELISA results at the village level. A future surveillance design in this region could make use of mobile technology to collect FMD outbreak reports from the village headmen of villages not included in the existing study (van Andel et al, ; Smolinski, Crawley, Olsen, Jayaraman, & Libel, ; Truong, ) and to collect blood samples from a limited subset of these villages to examine the external validity of the method. It is possible that these activities could be combined with census‐taking activities which are ongoing.…”

Environmental observation, social media, and One Health action: A description of the Local Environmental Observer (LEO) Network

“…Through LEO, members may choose to report a health-related outcome that they experienced, but the information is subject to lack of systematization, bias of self-report, diagnostic uncertainty, and confidentiality issues. Despite these limitations, the health information reported through LEO could serve as an indicator of issues requiring follow-up for public health practitioners, similar to unofficial reporting in event-based surveillance [ 36 ].…”

Eradication of Peste des Petits Ruminants Virus and the Wildlife-Livestock Interface

“…Diverse risk assessment approaches, including spatio-temporal risk mapping, can guide prioritization at wildlife-livestock interfaces (39,40). Participatory epidemiology supports this process, facilitates community engagement, and generates broader support for management decisions (41)(42)(43).…”