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Influenza-like Illness (ILI) definitions for Influenzanet, FluTracking, Reporta and Flu Near You/ SaludBoricua

Influenza-like Illness (ILI) definitions for Influenzanet, FluTracking, Reporta and Flu Near You/ SaludBoricua

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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....

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Context 1
... register, complete an intake questionnaire containing various medical, geographic and behavioral questions, and receive weekly emails for reporting symptoms (or a lack thereof ) since their last visit to the website [5] (Table 1). The incidence of ILI among participants is determined in real time using a syndromic case definition [5] (Table 2) and graphic representation of the results is dynamically updated on the system's web site. ...
Context 2
... system design and objectives vary across these systems, they all include a registration process which collects varying amounts of background data and weekly email prompts to encourage reporting of symptoms expe- rienced that week (Table 1). Symptom data is processed in real-time using syndromic definitions (Table 2) and is displayed, generally in the form of maps or timelines, on the system's website communicating the information back to the public. Many of the sites also provide public health news or information about the diseases that they target. ...

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... Brazil has one of the largest global disease registration systems, the Notifiable Diseases Information System (SINAN), which provides notifications of predominant diseases occurring in Brazil (Instrução normativa n.º 02/SVS/MS, de 22 de novembro de 2005, 2005). In addition, there are the "Observatory of Dengue" and "Dengue on the Web" applications that use websites as platforms for interaction and spatialization of information (Wójcik et al., 2014). In the healthcare sector, Brazil has seen the development of significant digital platforms, including "Saúde na Copa," created in 2014 in conjunction with the World Cup, and "Guardians of Health," established in 2016 in association with the Olympic Games. ...
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... This analysis is limited by various factors. A known weakness of participatory surveillance systems is the bias associated with participant self-selection into the program, as those who choose to participate are systematically different than those who do not (19). As such, participant populations in participatory syndromic surveillance systems tend to differ from the population they are intended to represent. ...
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... Unlike traditional surveillance systems, which rely on reports from health professionals or laboratory testing based on specific case definitions, participatory surveillance involves individuals sharing information, typically about symptoms rather than diagnoses [4]. As such, they are more sensitive but less specific than traditional surveillance systems and can provide timely information about disease within a population [4,5]. Research has indicated that, in view of influence surveillance, participatory surveillance systems can act as reliable complements to current sentinel surveillance systems [6]. ...
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Background Seasonal influenza causes significant morbidity and mortality, with an estimated 9.4 million hospitalisations and 290 000-650 000 respiratory related-deaths globally each year. Influenza can also cause mild illness, which is why not all symptomatic persons might necessarily be tested for influenza. To monitor influenza activity, healthcare facility-based syndromic surveillance for influenza-like illness is often implemented. Participatory surveillance systems for influenza-like illness (ILI) play an important role in influenza surveillance and can complement traditional facility-based surveillance systems to provide real-time estimates of influenza-like illness activity. However, such systems differ in designs between countries and contexts, making it necessary to identify their characteristics to better understand how they fit traditional surveillance systems. Consequently, we aimed to investigate the performance of participatory surveillance systems for ILI worldwide. Methods We systematically searched four databases for relevant articles on influenza participatory surveillance systems for ILI. We extracted data from the included, eligible studies and assessed their quality using the Joanna Briggs Critical Appraisal Tools. We then synthesised the findings using narrative synthesis. Results We included 39 out of 3797 retrieved articles for analysis. We identified 26 participatory surveillance systems, most of which sought to capture the burden and trends of influenza-like illness and acute respiratory infections among cohorts with risk factors for influenza-like illness. Of all the surveillance system attributes assessed, 52% reported on correlation with other surveillance systems, 27% on representativeness, and 21% on acceptability. Among studies that reported these attributes, all systems were rated highly in terms of simplicity, flexibility, sensitivity, utility, and timeliness. Most systems (87.5%) were also well accepted by users, though participation rates varied widely. However, despite their potential for greater reach and accessibility, most systems (90%) fared poorly in terms of representativeness of the population. Stability was a concern for some systems (60%), as was completeness (50%). Conclusions The analysis of participatory surveillance system attributes showed their potential in providing timely and reliable influenza data, especially in combination with traditional hospital- and laboratory led-surveillance systems. Further research is needed to design future systems with greater uptake and utility.
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Background While laboratory testing for infectious diseases such as COVID-19 is the surveillance gold standard, it is not always feasible, particularly in settings where resources are scarce. In the small country of Lesotho, located in sub-Saharan Africa, COVID-19 testing has been limited, thus surveillance data available to local authorities are limited. The goal of this study was to compare a participatory influenza-like illness (ILI) surveillance system in Lesotho with COVID-19 case count data, and ultimately to determine whether the participatory surveillance system adequately estimates the case count data. Methods A nationally-representative sample was called on their mobile phones weekly to create an estimate of incidence of ILI between July 2020 and July 2021. Case counts from the website Our World in Data (OWID) were used as the gold standard to which our participatory surveillance data were compared. We calculated Spearman’s and Pearson’s correlation coefficients to compare the weekly incidence of ILI reports to COVID-19 case count data. Results Over course of the study period, an ILI symptom was reported 1,085 times via participatory surveillance for an average annual cumulative incidence of 45.7 per 100 people (95% Confidence Interval [CI]: 40.7 – 51.4). The cumulative incidence of reports of ILI symptoms was similar among males (46.5, 95% CI: 39.6 – 54.4) and females (45.1, 95% CI: 39.8 – 51.1). There was a slightly higher annual cumulative incidence of ILI among persons living in peri-urban (49.5, 95% CI: 31.7 – 77.3) and urban settings compared to rural areas. The January peak of the participatory surveillance system ILI estimates correlated significantly with the January peak of the COVID-19 case count data (Spearman’s correlation coefficient = 0.49; P < 0.001) (Pearson’s correlation coefficient = 0.67; P < 0.0001). Conclusions The ILI trends captured by the participatory surveillance system in Lesotho mirrored trends of the COVID-19 case count data from Our World in Data. Public health practitioners in geographies that lack the resources to conduct direct surveillance of infectious diseases may be able to use cell phone-based data collection to monitor trends.
... Common platforms underlying participatory surveillance systems include social media sites, the Web, smartphone apps, and connected devices 2,10 . One of the most crucial challenges is recruitment and retention of a large cohort of participants reflecting the population of interest 3,11,12 . ...
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Participatory surveillance systems crowdsource individual reports to rapidly assess population health phenomena. The value of these systems increases when more people join and persistently contribute. We examine the level of and factors associated with engagement in participatory surveillance among a retrospective, national-scale cohort of individuals using smartphone-connected thermometers with a companion app that allows them to report demographic and symptom information. Between January 1, 2020 and October 29, 2022, 1,325,845 participants took 20,617,435 temperature readings, yielding 3,529,377 episodes of consecutive readings. There were 1,735,805 (49.2%) episodes with self-reported symptoms (including reports of no symptoms). Compared to before the pandemic, participants were more likely to report their symptoms during pandemic waves, especially after the winter wave began (September 13, 2020) (OR across pandemic periods range from 3.0 to 4.0). Further, symptoms were more likely to be reported during febrile episodes (OR = 2.6, 95% CI = 2.6–2.6), and for new participants, during their first episode (OR = 2.4, 95% CI = 2.4–2.5). Compared with participants aged 50–65 years old, participants over 65 years were less likely to report their symptoms (OR = 0.3, 95% CI = 0.3–0.3). Participants in a household with both adults and children (OR = 1.6 [1.6–1.7]) were more likely to report symptoms. We find that the use of smart thermometers with companion apps facilitates the collection of data on a large, national scale, and provides real time insight into transmissible disease phenomena. Nearly half of individuals using these devices are willing to report their symptoms after taking their temperature, although participation varies among individuals and over pandemic stages.
... KEYWORDS participatory surveillance; digital epidemiology; influenza-like illness; data transfer; surveillance; digital platform; Global Flu View; program; data sharing; public health; innovative; flu Overview Digital epidemiology has expanded significantly in recent years [1,2], encompassing not only passive digital disease detection [3], but also active crowdsourcing programs known as participatory surveillance (PS) [4][5][6][7]. PS has been defined as the bidirectional process of transmitting and receiving data for action by directly engaging the target population [8]. ...
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Participatory surveillance (PS) has been defined as the bidirectional process of transmitting and receiving data for action by directly engaging the target population. Often represented as self-reported symptoms directly from the public, PS can provide evidence of an emerging disease or concentration of symptoms in certain areas, potentially identifying signs of an early outbreak. The construction of sets of symptoms to represent various disease syndromes provides a mechanism for the early detection of multiple health threats. Global Flu View (GFV) is the first-ever system that merges Influenza-like Illness (ILI) data from more than eight countries plus one region (Hong Kong) on four continents for global monitoring of this annual health threat. GFV provides a digital ecosystem for spatial and temporal visualization of syndromic aggregates compatible with ILI from the various systems currently participating in GFV in near real-time, updated weekly. In 2018, the first prototype of a digital platform to combine data from several ILI PS programs was created. At that time, the priority was to have a digital environment that brought together different programs through an Application Program Interface (API), providing a real-time map of syndromic trends that could demonstrate where and when ILI was spreading in various regions of the globe. After two years running as an experimental model and incorporating feedback from partner programs, GFV was restructured to empower the community of public health practitioners, data scientists and researchers by providing an open data channel among these contributors for sharing experiences across the network. GFV was redesigned to serve not only as a data hub but also as a dynamic knowledge network around participatory ILI surveillance by providing knowledge exchange among programs. Connectivity between existing PS systems enables a network of cooperation and collaboration with great potential for continuous public health impact. The exchange of knowledge within this network is not limited only to health professionals and researchers but also provides an opportunity for the general public to have an active voice in the collective construction of health settings. The focus on preparing the next generation of epidemiologists will be of great importance to scale innovative approaches like PS. GFV provides a useful example of the value of globally integrated PS data to help reduce the risks and damages of the next pandemic.
... Symptom-based participatory surveillance -such as Outbreaks Near Me (44), FluTracking (45) and InfluenzaNet (46) -in which cohorts of individuals regularly report their symptoms, is a long-established approach to monitoring seasonal influenza (47). During the COVID-19 pandemic, those systems were rapidly adapted (or established) to contribute to SARS-CoV-2 surveillance (48,49). ...
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