The COVID-19 pandemic has highlighted the myriad ways people seek and receive health information, whether from the radio, newspapers, their next door neighbor, their community health worker, or increasingly, on the screens of the phones in their pockets. The pandemic’s accompanying infodemic, an overwhelming of information, including mis- and disinformation following a health emergency, has overwhelmed individuals, communities and health systems. Too much information, or information overload, can lead to people to have information avoidance, such as trying to avoid the news or turning off alerts on their phones. This impacts how they receive information, and getting credible, accurate information to them becomes more challenging when people limit the sources of information they consult. This applies to both health workers and individuals. Therefore, listening and understanding those information needs and behaviors is critical for mounting an effective emergency response.
This new reality of how information is catered and served by algorithms on social media and web feeds for individuals and how they consult different sources means more flexible approaches are needed to better monitor and understand the information environment people and communities live in. Recurring questions and concerns that go unaddressed across time and geography can create breeding grounds for misinformation. For example, conversations about public health and social measures introduced in one country could affect discourse in another country. Concerns about vaccine side effects could be hijacked and fictionalized to spread emotionally distressing misinformation about vaccines harming vulnerable people. Narratives of concern that were left unaddressed in communities often would resurface during COVID-19. Questions and concerns about health, especially about emerging health topics that feature unsettled science are legitimate, but if they are not fully addressed, less reliable sources will fill the void. This makes health information and misinformation different from other types of misinformation that were discussed before the pandemic in areas of elections and climate change.
Therefore, a systematic approach to monitoring infodemics and developing infodemic insights that are reproducible and evidence-based are needed. When monitoring conversations and the information environment on health topics, people will express questions, concerns, confusion and narratives that can inform the whole of the emergency response, thereby improving the likelihood of population acceptance and adherence to health guidance, treatments, diagnostics and public health and social measures. Infodemic insights recommendations may include clarifying confusing health guidance, improving service delivery, improving risk communication, deepening community engagement, or strengthening health worker capacity.
Today, WHO’s trained infodemic managers, over 1,300 from over 142 countries, have deepened their understanding of the complex information environment and how it affects health systems and health emergency responses. More than 95% of Member States reported tracking health misinformation and it continues to be a challenge for other outbreaks and emergencies. The learnings from these experiences are that we need to better triangulate between online and offline data sources to create a comprehensive picture of how a population’s questions, concerns, information voids, narratives and circulating mis- and disinformation affect their perceptions, attitudes and behavior. Building on this experience and in wide consultation from working infodemic managers across UN agencies and global public health partners, forthcoming guidance on integrating diverse datasets in analyzing and understanding infodemics in specific populations and contexts will be published in a manual by WHO and partners.
From the very first infodemiology conference and the first WHO global infodemic manager trainings in 2020, principles of ethics have been discussed when conducting social listening and infodemic management activities. In early 2023, WHO convened an ethics panel on ethics of social listening and infodemic management, with forthcoming guidance for health authorities that conducting social listening and infodemic insights generation, designing and implementing infodemic management interventions, and building public health systems to promote resilience to health misinformation.
This is an especially timely topic, as social listening and infodemic monitoring strategies have become more sophisticated, where new data sources are used in understanding how people search for, receive, feel about, share and act on health information. Some ethical concerns may be tied to data sources that are not public or where users have an expectation of privacy, such as closed social media networks. Some refer to this as “dark social” but absence of health authority voices in closed online spaces should not automatically make these closed spaces suspect or interpreted as sinister. This can problematize a group of people based on a small percentage of conversations that may be labeled mis- or disinformation, from a community that may not trust their health authority or have not found readily available health information from credible sources. Because understanding closed communities is not new to public health, other approaches and public data sources can be used to identify a community’s questions and needs for health information and health services that respect these social spaces and technological limitations of social media monitoring tools.
For example, public health professionals in other areas of health have worked in closed social networks, especially among vulnerable populations, such as in HIV, minority populations, migrant populations, refugees and young people. Infodemic management insights can be developed in a thoughtful, transparent, and ethical way that respect human rights, freedom of expression and public health values and principles.
The upcoming manual for developing integrated analysis for infodemic insights is expected to be published in May 2023 and guidance from the WHO ethics panel is expected to be published by the end of 2023. WHO continues to invest in infodemiology research, infodemic management capacity-building and guidance development to help countries prepare for the next pandemic. To stay informed about latest resources, tools, news and opportunities related to infodemic management, subscribe to the WHO Infodemic Management Newsflash here.