Participatory epidemiology : harnessing the HealthMap platform for community-based disease outbreak monitoring

Abstract

Due to increasing global trade and travel along with a range of environmental factors, emerging infectious diseases such as Severe Acute Respiratory Syndrome (SARS), drug-resistant tuberculosis, and 2009 HiNi continue to have significant impact on morbidity, mortality, and commerce worldwide. Early warning and detection of outbreaks plays an important role in protecting against disease, allowing public health authorities, organizations, and citizens to implement control measures rapidly. Due to its global reach, 2009 pandemic HiNi represented not only a unique call to action for disease outbreak detection systems, but also precipitated increased public awareness of issues of emerging infection. This thesis explores the use of informal, user-contributed disease reports from the general public as a means to improve knowledge of local events and enhance early warning during the first and second waves of 2009 HiNi. Building on the established HealthMap system, which has shown the effectiveness of using news media sources for rapid detection of outbreak events, we introduced the concept of "participatory epidemiology." Through a series of software tools for Web and smartphone, we invited users from the general public to contribute their own knowledge and awareness of local activity. We deployed the system in two phases: in the first phase, users could contribute links to existing sources of online information; in the second phase, users could also contribute free-form reports of their own experiences or events in their local communities. We received over 3,000 user submissions over the course of the study period from March 2009 to April 2010. We evaluated the system by examining a subset of notable reports and analyzing their timeliness as compared to previously existing HealthMap sources, as well as a range of qualitative factors demonstrating the potential for our approach. We further evaluated submissions relating to HiNI in the U.S. by aggregating and comparing their volume to the Centers for Disease Control and Prevention influenza activity metrics, finding a Pearson's correlation of 0.74. Overall, the study indicates that with the appropriate tools, everyday citizens can play an important role in identifying and reporting infectious disease activity. The system is currently in active use and further development is ongoing.