Knowing when to act: A call for an open misinformation library to guide actionable surveillance

Abstract

The design and reporting of data-driven studies seeking to measure misinformation are patchy and inconsistent, and these studies rarely measure associations with, or effects on, behaviour. The consequence is that data-driven misinformation studies are not yet useful as an empirical basis for guiding when to act on emerging misinformation threats, or for deciding when it is more appropriate to do nothing to avoid inadvertently amplifying misinformation. In a narrative review focused on examples of health-related misinformation, we take a critical perspective of data-driven misinformation studies. To address this problem, we propose a curated and open library of misinformation examples and describe its structure and how it might be used to support actionable surveillance. We draw on experiences with other curated repositories to speculate on the likely challenges related to achieving critical mass and maintaining data consistency. We conclude that an open library of misinformation could help improve the consistency of data-driven misinformation study design and reporting, as well as provide an empirical basis from which to make decisions about how to act on new and emerging misinformation threats.

Measuring the burden of infodemics with a research toolkit for connecting information exposure, trust, and health behaviours

“…To answer key questions about associations between information exposure and harmful or nonprotective health behaviours, we need to develop new tools for tracking information exposure in ways that can be individually linked to outcomes from surveys of attitudes, behaviours, or data about diagnoses or health outcomes. To make it easier to synthesise results across studies (Dunn et al, 2021), these tools also need to make it easy for investigators to implement standardised protocols so that studies can be deployed quickly and consistently everywhere, including in low resource settings.…”

“…Social media analysis is a common study design in infodemiology (Wang et al, 2019), but very few are designed to link measures of individual information exposure to risks of harmful or non-protective behaviours or health outcomes, or observe or measure trust as a modifying factor. Most social media analyses only measure the incidence of relevant information online and can only speculate on impact (Dunn et al, 2021). This skewed focus in infodemiology research affects our ability to assess the burden of disease associated with information exposure, and limits the potential to use infodemiology research to inform public health actions aimed at reducing the impact of exposure to low-quality or harmful information on health outcomes (Dunn et al, 2018).…”

Measuring the burden of infodemics with a research toolkit for connecting information exposure, trust, and health behaviours

“…Social media analysis is a common study design in infodemiology [ 30 ], but very few are designed to link measures of individual information exposure to risks of harmful or non-protective behaviours or health outcomes, or observe or measure trust as a modifying factor. Most social media analyses only measure the incidence of relevant information online and can only speculate on impact [ 10 ]. This skewed focus in infodemiology research affects our ability to assess the burden of disease associated with information exposure, and limits the potential to use infodemiology research to inform public health actions aimed at reducing the impact of exposure to low-quality or harmful information on health outcomes [ 9 ].…”

Utility and usability evaluation of an information diary tool to measure health information access and exposure among patients with high cardiovascular risk

“…More recently, there has been a range of studies that use data from social media at scale to estimate information exposure. However, these studies do not recruit participants, and hence remain disconnected from their health behaviors ( 16 , 17 ). For studies that recruit participants, there is a lack of standardized approaches and inconsistency in how information access and exposure are measured ( 2 , 13 ).…”