Participatory surveillance is a form of public health surveillance in which members of the public, community workers, or other nontraditional participants report health information directly to support disease monitoring. In epidemiology, participatory surveillance complement traditional surveillance via collection of community data, often through digital symptom-reporting platforms, surveys, or local reporting networks. Most common uses are for influenza and influenza-like illness, and can promote earlier detection of outbreaks, more area coverage, and public engagement. However, it is generally used as a complement to established surveillance systems since self-reported data may be affected by bias, uneven participation, and validation challenges.
History Towards the beginning of the development of Web 2.0, an increase in online socializing and interaction emerged, largely from the function of social media platforms. Social media platforms originally emerged within the context of the online information highway, where users can control what information is available to other users of the platform. Users can now digitally attach people to locations, without having to physically be within the location, a concept coined as geotagging. With added awareness of the locations of users, an aspect of greater socialization and interconnectivity emerges within both the digital and tangible world. Since the online information highway collects and stores information more permanently than the physical world, many interactions amongst online users can last much longer than physical ones. Since users can control the information and locations in which they associate themselves, they can in part surveil themselves and others to an extent. This is participatory surveillance within a web-based paradigm. In addition to this, participatory surveillance has begun to be referred to as a tool for ecological field research. Currently, it is extremely difficult to detect disease outbreaks in enough time to prepare people for the outcomes. Often, in hard to reach areas such as the Arctic, researchers cannot gain an intensive look into the subject of disease outbreak closely enough to gain accurate results. Indigenous peoples know the ecology of the land better and how to reach overlooked locations of research. Researchers can use these people as rural surveyors, capturing instances of disease outbreak much quicker and easier than the researchers themselves.
Public health and epidemiology Participatory surveillance is used in public health to gather information on symptoms, exposures, or events from the public or from community-based reporters. It differs from other methods like passive surveillance (which depends on reports submitted from hospitals, clinics, public health units, laboratories, or other institutions). Instead, participatory surveillance allows data to be contributed directly by individuals. These systems are often digital, but they can also involve community networks and field reporting. Participatory surveillance systems have been used for influenza-like illness, event detection, and multisector surveillance. They have included human, animal, and environmental health. A 2022 review identified 60 ongoing participatory surveillance systems across five continents. Best-practice guidance for design, implementation, reporting, and analysis of participatory surveillance (for illnesses similar to influenza) has been published by the WHO. Some of the epidemiologic advantages of participatory surveillance include: ability to collect information from both symptomatic and asymptomatic individuals, to capture initially untreated people, and to supplement facility-based surveillance. Some of the limitations include biases, uneven participation, and validation challenges.
Comparison with other surveillance approaches In passive surveillance, health entities receive reports from hospitals, clinics, laboratories, public health units, and other groups that report public health data. Participatory surveillance also differs from active, sentinel, and syndromic surveillance. These are established surveillance strategies used for different public health purposes. Participatory surveillance is unique because data is contributed directly by community members, typically before formal diagnosis or beginning of treatment.
Social media
Counter-surveillance Counter-surveillance refers to surveillance-based challenges to power imbalances between individuals and institutions. Although state and industry mass surveillance has received substantial public attention in the wake of disclosures like those made by Edward Snowden about the National Security Agency, interest in activist-deployed and peer surveillance has been increasing. Whereas the average person may not fully understand the surveillance programs of larger collectivities, people are drawing upon surveillance tools themselves in interpersonal relationships and in attempts to bring about institutional accountability. Some researchers assert that by using these technologies of surveillance, the same ones used by companies to track consumer tendencies, the public is essentially feeding into practices of their own personal surveillance.
Empowerment One argument towards social media based participatory surveillance is participatory surveillance within social digital media schemas work to emphasize the power that comes from monitoring what is surveilled of themselves in the context of others rather than being constituted as an invasion of privacy, or disempowerment. Within the visual discourse of reality television, the artistic narrative associated with presenting lives, creates a fake reality in which people can contextualize, therefore keeping the reality of some aspects of an individual or collectives' lives still privatized. This thinking can be transposed to other socially constructed media technologies. In contrast, ambient awareness is associated with cell phones since they are rarely turned off. This poses a greater security risk. Surveillance webcams focus on the aspects of what real users want to show to the digital audience. It is privatized in the respect that users control what they allow others to see causing them to feel liberated.
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