The COVID-19 pandemic birthed a major global infodemic: an overwhelming amount of information, including mis- and disinformation accompanying health events,, that has negatively affected population health, health systems, and pandemic response, while also fomenting public mistrust. Many countries and their health systems were unprepared to deal with the effects of information overload on health workers and the public.

Researchers are working to fully understand the harms of the infodemic, specifically health misinformation. The infodemic has created changes in the information environment that affect the decisions people make about their health. For example, anecdotal reports of overdoses from unapproved medications and treatments, vaccine hesitancy, stigmatization and discrimination, and advocacy of violence against health workers have pointed back to behavioral changes driven by the changing information environment. It’s important to understand how the complex and globally networked information environment has affected people and health systems so that we can better prepare for the next pandemic.

We can do this through stories.

Stories are a powerful way of not just communicating ideas and values, but also processing events and reflecting on change. Stories can be more emotionally compelling than facts and figures, and therefore are often used to help health information be more widely shared, adopted, and influential on people’s perceptions and health behaviors. Storytelling can also help repackage complex ideas from science or medicine into simpler, more memorable narrative formats. Stories can also assist in understanding the impact of a health topic on a community through real-life experiences. For these reasons, people working to address challenges to the information environment and promote public health should learn the skills to understand the power of stories and how to build them.

In 2022, the World Health Organization (WHO) held virtual workshops for approximately 100 people — many of whom were on the front lines of the COVID-19 infodemic response, — in English, Spanish, and French, to learn the art of storytelling for health. Through these workshops, participants were invited to tell their stories of how the COVID-19 infodemic affected them, their teams, and their work as infodemic managers. Storytellers authorized media releases of their stories and shared them with the WHO, which published them online.

What can we learn from this collection of stories, and what can we gain from utilizing a participatory evaluation approach? In order to understand stories of impact collected from a community, we can gain better insights if those stories are discussed and evaluated by members of that same community, who might identify themes and narrative threads that would otherwise be missed. This participatory evaluation approach, with elements from Most Significant Change methodology, differs from more traditional qualitative analysis methods where focus groups’ discussions may be captured in transcripts, which are then coded and analyzed by researchers who often are not familiar with the community or setting in which the stories are collected or discussed. This process also empowers community members to discuss and analyze the experiences of others like them and recommend solutions that will be appropriate for the community.

The next step would be to understand the experiences represented in the stories through the prism of other members of the same community. In June 2023, 22 members from the original cohort of the WHO-trained infodemic manager community were invited to join one of three virtual focus groups and discuss 49 stories previously collected and published online by the WHO from the storytelling project. The focus group participants were drawn from some 1,400 participants worldwide from over 120 countries. They were trained in a WHO infodemic management training, or participated in a workshop or conference during the COVID-19 pandemic. The focus group participants were briefed on the project, provided informed consent, and were randomly assigned 2-3 stories from the storytelling project to read before meeting to discuss during their respective focus groups. The aim of the discussion groups was to identify themes and gaps that appear across all stories, and to choose three stories that best represented the experiences of the WHO infodemic management community. From there, solutions and recommendations could be developed.

Participants in these focus groups are experts in their own experience, and in aggregate, the issues they discuss that come from the stories they read and that may represent a wider range of potential impacts than what may be captured in more close-ended data collection methods, such as surveys or interviews, where the domains of expected change or impacts are formulated ahead of time. The focus group participants would help identify these impacts and themes that emanate from the stories.

Each focus group had a facilitator using a discussion guide to lead the conversation while being supported by two trained note-takers. Participants were asked to summarize and share their assigned stories and identify themes or ideas that resonated with them and connected to their own experiences. As the discussion evolved, sticky notes with stories and themes were used on a virtual whiteboard, which allowed for the moving around of ideas/concepts, adding newly identified themes, and organizing stories into groupings. Then, common themes and narratives were identified as all stories were discussed. During this process, new ideas/concepts that included the identified themes were generated. Finally, participants discussed the themes in order to identify three stories that best represented their experiences as infodemic managers and the impact of the infodemic on their communities.

This guide further describes how the discussion was structured and how the group selected their top three stories per group. This approach can be used for any community story evaluation project designed to understand impacts of the information environment on a particular health or social topic.

Figure 1. Process for utilizing community stories to understand information environment impacts

The process and the outcomes would inform two outputs: this report, summarizing the methods, but focusing on results and recommendations; the second, a guide that will provide step-by-step instructions on how to use a similar process of collecting and analyzing community stories with community members to understand how the information environment might impact people’s perceptions, behaviors, and understandings of a health topic.

Across three focus groups, involving 22 participants analyzing 49 stories, we sought to answer these key questions: 

• What did the participants across these three infodemic story analysis focus groups identify as common themes? 
• How did each group whittle down a pile of stories (ranging from 14 to 21 stories per focus group) to 3 stories that best illustrate infodemic impacts on their community? 
• What can we learn about common themes that emerged across all three groups?

Focus group one 

In the first focus group, vulnerability and anxiety, and the push to seek solutions in the absence of trusted health information came through strongly in the discussions of stories and their themes. The participants discussed the emotionally draining multifaceted nature of their efforts, working and interacting with people through screens and in-person, which were seen as vital to understand and address people’s questions and fears during the pandemic. They also could become targets for criticism if people didn’t believe their advice or did not trust them. They reflected on several stories of conflicting messages, unreliable messengers, and the drip-drip of emerging science, and how this sowed anxiety among the public. 

When reflecting on a story about the power of cultural and social norms reinforcing respect for older people’s wisdom and opinions, even if they are not evidence-based, one participant mentioned a Malaysian concept of goyang, or “swaying back and forth” to describe this influence on community members’ health decisions. Several participants connected to stories that discussed the emotional and professional weight and moral distress of mitigating harms from misinformation; storytellers weren’t always successful and felt fearful of the COVID-19 virus themselves. 

Participants chose these three stories:

• “Pregnant and Worried” is about a pregnant pharmacist who, despite her initial reservations, considers using a home remedy for COVID-19 for the sake of her unborn child’s health.  
• “Chlorine Dioxide” is about a citizen’s disappointment with local authorities for pushing unverified COVID-19 treatments to the public in the form of chlorine dioxide. 
• “Garlic and Ginger” sees the author using Facebook to avoid social isolation during a civil war. They fall very ill after following online advice to consume large amounts of garlic and ginger daily to stave off COVID-19 infection. 

Focus group two

In the second focus group, questions around who is credible and who is in a position to influence the conversation about COVID-19 and can mitigate infodemic harms came through strongly in the discussions. Early in the discussion, two participants, who are Italian, identified how experiences from Africa  in their assigned stories as were similar to their own experiences in Italy, specifically about family bonds being strained by the pandemic and lamenting choices family members and friends made that put them at risk of infection and death, despite interventions made by the storyteller and the participant. 

Soon thereafter, participants commented that several stories included healthcare workers who encountered fear from their own families, workplace aggression and storytellers who had to navigate the personal-professional split sense of self during a prolonged crisis where there often weren’t support structures in place for them. However, on a positive note, the discussion also included strategies that storytellers used to address infodemic harms. These included clear messaging, relaying first-hand experience, listening carefully, developing tailored messages and adapting  messages, and changing risk.

These three chosen stories were by health workers or journalists attempting to do their jobs, despite professional and personal challenges, and were able to address health misinformation successfully:

• “Recharging the Battery” describes a healthcare worker’s encounter with a distrustful patient whose visit prompts questions about how social media has compromised the trust between the healthcare force and community members during the pandemic.
• “Bread and Butter” is about a journalist’s efforts to remain true to their professional mission of providing accurate information regarding COVID-19 in their country, despite prevalent misinformation from opinion leaders and the journalist’s risk of losing their job.
• “Psychological Diarrhea” tells the story of a health professional’s experience in balancing professional and personal responsibilities, despite the mental fatigue and cognitive drain due to prevalent misinformation around COVID-19 to get vaccinated and encourage other community members to do the same.

Focus group three 

In the third focus group, participants described change and what was learned during the pandemic. The lack of support for healthcare workers and others addressing misinformation during the COVID-19 pandemic was featured in several stories at the beginning of the discussion. The experience was one with which many participants identified. One described it as feeling “lonely and abandoned by our communities by doing something right and seeing the reaction of the opposite side.” Literacy, in the context of science and health, was brought up by one participant as a weakness that resulted in much of the misinformation and concerns featured in the stories being discussed. One participant said that in Polish, there are two words to describe fear — fear of the unknown versus fear of tangible things. This observation sparked a discussion about the paucity of high-quality health information available in languages other than English during the pandemic, and how this made it much more difficult to address concerns or misinformation among groups who had less readily accessible and understandable health information.

The group’s three chosen stories reflect changing tactics to address fears and misinformation, and what could be influenced by one person versus being a large systemic challenge that one person alone cannot fix. The three chosen stories included:

• “A Bad Sign” is about a physician who witnesses a patient go into anaphylactic shock after receiving the COVID-19 vaccine, and is surprised to learn that the patient still encourages their family to get vaccinated afterward.
• “Science Questions” tells the story of a science educator who is forced to accept that they don’t “have all the answers” yet with regard to COVID-19, and instead focuses on another key pillar of science: asking sensible questions and developing a good methodology for appraising information.
• “Haystack” describes a series of information “tsunamis” that hit society in the wake of COVID-19: first mass uncertainty and fear, followed by a lack of verified information and finally a wave of widespread mis- and disinformation.

What do these nine stories and the discussions that led up to them being chosen tell us about what people working on the front line of the COVID-19 pandemic need for the next emergency? 

These were the common themes that surfaced across all three groups and the stories:

How can we address these challenges? 

There are many potential solutions to these challenges, but they will require a systems-level approach, coordinating the efforts of different partners at multiple levels of society, such as community level, with media, and health systems, because of the complexity of these challenges.

These stories highlighted the universality of experiences of storytellers across dozens of countries in a global pandemic that had deleterious effects on nearly every country and community, and the trauma associated with the COVID-19 virus’ spread and rhetoric about it. 

The information environment is constantly changing, which will make the next emergency or outbreak more complicated to address. Future research should also adapt to ongoing changes in the information environment, community information needs, availability of public health resources, and evolving public health approaches. Early frameworks for understanding infodemic challenges were limited to addressing the “viral” nature of information via approaches such as fact checking, but this did not address the underlying reasons health misinformation gains traction in the first place. In the future, taking a more expansive approach that accounts for sociocultural influences on information spread and how it affects multiple levels of society simultaneously can help develop more effective infodemic strategies that better protect more people — especially health workers — from infodemic harms.

Heightened awareness of the gradual, growing impact infodemics can have on individuals, communities, and systems is critical to building resilient infodemic preparedness infrastructure in our public health system. Viewing infodemics as continuous sources of “environmental pollution” with accumulative consequences is an insight that can benefit infodemic preparedness because healthy information ecosystems can go hand in hand with long-term approaches that could span even decades. The accumulative harms of infodemics and mis/disinformation can be more effectively managed when they are seen as  long-term phenomena that erode trust in health systems and sources of credible health information such as health workers, the media, and health departments. We can assess the ongoing impact of a changing information environment by having community members share and reflect on past experiences through stories, and draw through-lines across temporal and geographic contexts of common challenges. We can learn from the stories we tell one another, and our health systems can be strengthened because of it.

Ultimately, all health is local, and addressing unhealthy information environments and infodemic impacts will need to be localized as well. We should focus and deepen our understanding of the local information environment, local community information needs, and local structures and resources that can be leveraged to address gaps in health information and service delivery. Tools like the community stories guide can support more people working in public health to engage in this work, and design solutions tailored to local infodemic and health information environment challenges.

In addition to recognizing the partnership of the World Health Organization Infodemic Management Team, particularly Sylvie Briand, Tim Nguyen and Tina Purnat, the support of the Brown University Information Futures Lab, and all the people who contributed stories and participated in the focus group discussions in the pilot project, the authors would like to thank the following people for their feedback on this draft report:

Veronica Avalos
Christine Chan
Sandra Machiri
Fran Penfold
Nikki Teggelove
Paraclete Ugwu
Isabel Valero
Chris Voegeli
Becky White