Participatory Healthcare INformatics
In recent years, there has been increased interest in using Participatory Health Informatics (PHI) to detect disease outbreaks or learn about pandemics. However, the role of PHI in understanding and managing pandemics, the role of citizens in this context, and which methods are relevant for data collection and processing to remain unclear, as do the types of data that are relevant.
We identified studies investigating the role of PHI in detecting and managing pandemics through a literature review. PubMed, CINAHL (Cumulative Index to Nursing and Allied Health Literature), IEEE Xplore, ACM (Association for Computing Machinery) Digital Library, and Cochrane Library studies were screened. Data from studies that met the eligibility criteria were extracted and narratively synthesized.
The small number of studies for most diseases prevented firm conclusions about the utility of PHI in detecting and monitoring disease outbreaks. For others, such as COVID-19, social media and online search patterns matched disease patterns and detected disease outbreaks earlier than traditional public health methods, implying that PHI can help with disease and pandemic monitoring.