Chief Innovation Officer
Boston Children’s Hospital
The 21(st) century has seen the rise of Internet-based participatory surveillance systems for infectious diseases. These systems capture voluntarily submitted symptom data from the general public and can aggregate and communicate that data in near real-time. We reviewed participatory surveillance systems currently running in 13 different countries. These systems have a growing evidence base showing a high degree of accuracy and increased sensitivity and timeliness relative to traditional healthcare-based systems. They have also proven useful for assessing risk factors, vaccine effectiveness, and patterns of healthcare utilization while being less expensive, more flexible, and more scalable than traditional systems. Nonetheless, they present important challenges including biases associated with the population that chooses to participate, difficulty in adjusting for confounders, and limited specificity because of reliance only on syndromic definitions of disease limits. Overall, participatory disease surveillance data provides unique disease information that is not available through traditional surveillance sources.