With increased participation, FNY has the potential to serve as a viable complement to existing outpatient, hospital-based, and laboratory surveillance systems. Although many established systems have the benefits of specificity and credibility, participatory systems offer advantages in the areas of speed, sensitivity, and scalability.
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.
BackgroundFlu Near You (FNY) is an Internet-based participatory surveillance system in the United States and Canada that allows volunteers to report influenza-like symptoms using a brief weekly symptom report.ObjectiveOur objective was to evaluate the representativeness of the FNY population compared with the general population of the United States, explore the demographic and behavioral characteristics associated with FNY’s high-participation users, and summarize results from a user survey of a cohort of FNY participants.MethodsWe compared (1) the representativeness of sex and age groups of FNY participants during the 2014-2015 flu season versus the general US population and (2) the distribution of Human Development Index (HDI) scores of FNY participants versus that of the general US population. We analyzed associations between demographic and behavioral factors and the level of participant follow-up (ie, high vs low). Finally, descriptive statistics of responses from FNY’s 2015 and 2016 end-of-season user surveys were calculated.ResultsDuring the 2014-2015 influenza season, 47,234 unique participants had at least one FNY symptom report that was either self-reported (users) or submitted on their behalf (household members). The proportion of female FNY participants was significantly higher than that of the general US population (n=28,906, 61.2% vs 51.1%, P<.001). Although each age group was represented in the FNY population, the age distribution was significantly different from that of the US population (P<.001). Compared with the US population, FNY had a greater proportion of individuals with HDI >5.0, signaling that the FNY user distribution was more affluent and educated than the US population baseline. We found that high-participation use (ie, higher participation in follow-up symptom reports) was associated with sex (females were 25% less likely than men to be high-participation users), higher HDI, not reporting an influenza-like illness at the first symptom report, older age, and reporting for household members (all differences between high- and low-participation users P<.001). Approximately 10% of FNY users completed an additional survey at the end of the flu season that assessed detailed user characteristics (3217/33,324 in 2015; 4850/44,313 in 2016). Of these users, most identified as being either retired or employed in the health, education, and social services sectors and indicated that they achieved a bachelor’s degree or higher.ConclusionsThe representativeness of the FNY population and characteristics of its high-participation users are consistent with what has been observed in other Internet-based influenza surveillance systems. With targeted recruitment of underrepresented populations, FNY may improve as a complementary system to timely tracking of flu activity, especially in populations that do not seek medical attention and in areas with poor official surveillance data.
Grindr outreach by Public Health in a suburban county seems acceptable to MSM and leads to a 14-fold increase in MSM reached for counseling and education compared with a traditional outreach period. Further evaluation of technology-enabled approaches for STD/HIV prevention in suburban and rural MSM is warranted.
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