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 accompanyinginfodemic, 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 thefirst 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.
Credit: WHO/Sam Bradd
