Purpose of review: The purpose of this scoping review was to summarize literature regarding the use of user-generated digital data collected for non-epidemiological purposes in human immunodeficiency virus (HIV) research.
Recent findings: Thirty-nine papers were included in the final review. Four types of digital data were used: social media data, web search queries, mobile phone data, and data from global positioning system (GPS) devices. With these data, four HIV epidemiological objectives were pursued, including disease surveillance, behavioral surveillance, assessment of public attention to HIV, and characterization of risk contexts. Approximately one-third used machine learning for classification, prediction, or topic modeling. Less than a quarter discussed the ethics of using user-generated data for epidemiological purposes. User-generated digital data can be used to monitor, predict, and contextualize HIV risk and can help disrupt trajectories of risk closer to onset. However, more attention needs to be paid to digital ethics and the direction of the field in a post-Application Programming Interface (API) world.
Keywords: Digital data; Digital epidemiology; Digital public health surveillance; HIV; Infodemiology; Infoveillance.
© 2023. The Author(s).