ABSTRACT
OBJECTIVES: Using participatory health informatics (PHI) to detect disease outbreaks or learn about pandemics has gained interest in recent years. However, the role of PHI in understanding and managing pandemics, citizens' role in this context, and which methods are relevant for collecting and processing data are still unclear, as is which types of data are relevant. This paper aims to clarify these issues and explore the role of PHI in managing and detecting pandemics. METHODS: Through a literature review we identified studies that explore the role of PHI in detecting and managing pandemics. Studies from five databases were screened: PubMed, CINAHL (Cumulative Index to Nursing and Allied Health Literature), IEEE Xplore, ACM (Association for Computing Machinery) Digital Library, and Cochrane Library. Data from studies fulfilling the eligibility criteria were extracted and synthesized narratively. RESULTS: Out of 417 citations retrieved, 53 studies were included in this review. Most research focused on influenza-like illnesses or COVID-19 with at least three papers on other epidemics (Ebola, Zika or measles). The geographic scope ranged from global to concentrating on specific countries. Multiple processing and analysis methods were reported, although often missing relevant information. The majority of outcomes are reported for two application areas: crisis communication and detection of disease outbreaks. CONCLUSIONS: For most diseases, the small number of studies prevented reaching firm conclusions about the utility of PHI in detecting and monitoring these disease outbreaks. For others, e.g., COVID-19, social media and online search patterns corresponded to disease patterns, and detected disease outbreak earlier than conventional public health methods, thereby suggesting that PHI can contribute to disease and pandemic monitoring.