Chapter 7. 7 Public Knowledge During the COVID-19 Infodemic

Health Literacy

Health literacy is not a new concept, but with the emergence of COVID-19, it has been thrust into the spotlight under the guise of conversations about misinformation. Health literacy is frequently reduced to what is considered functional health literacy: the ability of a patient to apply basic literacy skills to be able to engage in rudimentary health behaviours, such as understanding appointment cards or prescription directions. However, this chapter will focus on interactive and critical health literacy (Nutbeam, 2000, 2008). Interactive health literacy refers to the ability to “extract information and derive meaning from different forms of communication, and to apply new information to changing circumstances” (Nutbeam, 2000). Critical health literacy applies more advanced cognitive skills to analyze information and then use it to “exert greater control over life events and situations” (Nutbeam, 2000). Beyond the ability to follow directions, the more advanced one’s health literacy is, the more autonomy they have in finding, understanding, evaluating, and applying health information in their daily life.

People with advanced health literacy skills have the tools necessary to identify what kind of health information they need, locate and retrieve information that meets their needs, and then discern whether that information is reliable and credible. They may also have the skills to triangulate the information they encounter against other sources of information and choose the most reliable evidence. In the context of COVID-19, this means an individual with interactive and critical health literacy skills can clearly identify what questions they have, then take an intentional path toward finding information that answers their questions. Alternatively, many individuals simply encounter COVID-19 information without looking for it. Whatever the path to information discovery, the individual must be able to verify its credibility and reliability, apply this new information to what they already know, and be able to extrapolate meaning from it or understand its potential impact.

Health literacy sits at the core of the COVID-19 infodemic. The crisis, I argue, is not only the prevalence of misinformation but also that the public, broadly speaking, is not equitably equipped with adequate health literacy skills to be able to identify and use appropriate health information. Further, health literacy has been established as a mediating social determinant of health, wherein recent evidence has demonstrated that strengthening health literacy, alongside other initiatives, could reduce health disparities and promote health equity (Nutbeam & Lloyd, 2021). A key finding from a literature review suggests that one’s health literacy is reflective of their experience with the use of information, their comfort with technology, their educational background, and their socioeconomic status (Martzoukou & Sayyad Abdi, 2017). This review finds that “the internet is an important source of health information across different demographics” and the need for health literacy increases as public access to online health information also increases (Martzoukou & Sayyad Abdi, 2017). These findings align with what is currently known about the digital divide and how existing social structures, alongside socioeconomic status, can influence not only an individual’s access to adequate health information but also how they perceive their ability to access such information (Bodie & Dutta, 2008; Smith, 2021).

Wikipedia and COVID-19: Filling the Health Literacy Gap

When it comes to levelling out the varied health literacies of individuals, Wikipedia has promise. In interactive and critical health literacy, advanced cognitive skills are required so the information seeker or user can adequately evaluate the quality, relevance, and utility of the information at hand. In the context of COVID-19, anyone with an internet connection has probably experienced information overload. New knowledge related to the pandemic is generated and shared at a velocity that outpaces a person’s ability to keep up. Add to this the noise of misinformation that can drown out methodologically sound scientific knowledge, and it is easy to picture an overwhelming experience that makes it difficult for anyone, including those with adequate or advanced health literacy, to make sense of the pandemic, the virus, or the disease.

Despite best efforts from well-meaning organizations and individuals to create high-quality and credible consumer health websites (e.g., Health Canada, MedlinePlus, Mayo Clinic, NHS), Wikipedia is one of the most frequently accessed health information resources on the internet (Birkun, 2024; Heilman et al., 2011; Heilman & West, 2015; Shafee et al., 2017). It has been situated as a well-used and valuable health information resource in various contexts for the public, physicians, teachers, students, and researchers alike (Smith, 2020). Early research into understanding the use of Wikipedia for health information indicates that the general familiarity of Wikipedia—internet users know it and recognize it when scanning search engine results—lends itself to the broad reach and readership of Wikipedia’s health and medical content (Huisman et al., 2020; Smith, 2023a).

The quality of Wikipedia’s medical content cannot be assessed in whole because “Wikipedia’s articles are individual pieces of a larger whole . . . a mosaic . . . where some pieces are more complete than others” (Smith, 2020), but its potential to contribute to the closure of health literacy gaps is based on its self-governed community guidelines for content creation and maintenance. Volunteer contributors must comply with stringent community guidelines to which they are held accountable by other contributors. Among these guidelines are the requirement to maintain a neutral point of view (“Wikipedia: Neutral Point of View,” 2026) within the article. NPOV can minimize the requirement for readers to assess the article for bias or seek out counterpoints. Ideally, all available information is in the article, giving readers a clear picture of what knowledge has been generated and is presented in a tone that does not require the reader to appraise the article for potential bias.

The requirement to verify information added to the article with high-quality, reliable sources with even more specific guidelines for reliable sources of medical information (“Wikipedia: Reliable Sources,” 2026; “Wikipedia: Identifying Reliable Sources,” 2025) limits the reader’s need to evaluate the quality of sources used to generate the Wikipedia article. Evaluation of news media and academic sources cited in an article is presumed to be undertaken by the contributor adding them. Further, the credibility or reliability of sources is negotiated by the editing community, creating an information environment for the reader wherein the reader consumes information that has already undergone a certain degree of scrutiny. Wikipedia is also not the place to create new knowledge (“Wikipedia: No Original Research,” 2026). As such, it situates itself as a valuable resource to learn about existing knowledge without requiring the reader to rigorously appraise its content in ways primary or secondary studies must be appraised: for the possibility of bias or methodological rigour.

For COVID-19, Wikipedia is a single resource that can be consulted to get a sense of what is known about the virus, the vaccine, the pandemic, and more. Early in the pandemic, it garnered media attention for how quickly new and evolving information was added to relevant articles, the expanse of its coverage of the global pandemic, the dedication of its editors to updating relevant articles (Bedirian, 2021), and the importance of protecting its approach to content creation “in service of the public interest” (Keton & Humborg, 2021). In June 2021, a Canadian news media source released an article refuting Wikipedia’s decades-long reputation as unreliable, suggesting that all information sources should be subjected to equal scrutiny (Ibrahim, 2021). Existing knowledge about COVID-19 that is summarized in Wikipedia is monitored by other editors, updated as our knowledge of the virus evolves, and supported with vetted citations that must meet reliability guidelines. Evidence emerged in 2021 that the resource experienced an increase in volunteer editors and in productivity in 2020, after the COVID-19 virus was declared a global pandemic (Ruprechter et al., 2021).

Wikipedia can mitigate inequities in health literacy with respect to one’s ability to “discriminate between different sources of information” and appraise health information about risks to personal health (Nutbeam & Lloyd, 2021), but it cannot resolve health literacy inequities. It is not, nor does it claim to be, a resolution for inequities in health literacy among the general populace. However, its editorial model situates it as a promising, accessible, consumer health resource that, in its best form, stands to provide impartial fact-based medical information that has been scrutinized by an internal peer-review system to ensure verifiability and reliability—removing much of that mental labour for the consumer (Smith, 2023b). Although it remains the responsibility of the consumer to identify that each page in Wikipedia must be evaluated individually (Epstein, 2022), the work within the scope of WikiProject COVID-19 eases this responsibility.

One may argue that other consumer health websites about COVID-19 are also frequently updated, cite high-quality evidence, and use plain, accessible language. While this may be true, the simple act of the reader navigating to Wikipedia over and above other resources must not be ignored. The fact is, people commonly access Wikipedia even if it is not necessarily their preferred information source (Sebelefsky et al., 2015; Smith, 2023a). It is often selected from search engine results in health information searches because it is familiar, easy to read, and comprehensive (Huisman et al., 2020; Smith, 2023b). This finding aligns with theories of human information behaviour research, specifically, the principle of least effort, which is based on the finding that “people invest little in seeking information, preferring easy to use, accessible sources to sources of known high quality that are less easy to use and/or less accessible” (Fisher et al., 2005, p. 4).

Finally, with the great strides Wikipedia has made in documenting the evolution of a global pandemic and summarizing the most currently available knowledge as the situation evolves, inequities within Wikipedia’s content must not be ignored. Wikipedia’s coverage of COVID-19 has benefited a broad range of people, but much like the real world, it is built by a group of privileged individuals with similar life experiences. It is widely acknowledged that editors of English Wikipedia are, generally, a homogenous group with limited diversity, which means there are important voices missing from the editing community.

One important example is the poor documentation of the unique experiences of Canada’s Indigenous populations in the pandemic article for Canada. Many of the pandemic-related articles for Canada’s provinces or territories have limited or no information about First Nations, Inuit, or Métis populations, even though these populations were prioritized for early vaccination, continue to face unique challenges with controlling transmission, and in some northern or remote communities, struggle with limited capacity to manage an influx of new cases. There are several contributing factors to this shortcoming that, although important for discussion, are beyond the scope of this chapter. Examples include a lack of Indigenous representation among Canada’s Wikipedia contributors or incompatible perceptions of what it means for a source to be reliable between “Wikipedia: Reliable Sources” / “Wikipedia: Identifying Reliable Sources (Medicine)” and Indigenous ways of knowing and Indigenous ways of knowing.

Wikipedia and COVID-19 in the Canadian Context

In a time of heightened need for high-quality, reliable, unbiased health information that is easily accessible by all people, including individuals with limited health literacy skills, Wikipedia can be a useful tool for public health communication. But in practice, has this held true for Canada? Let’s investigate two Wikipedia articles relevant to COVID-19 in the Canadian context.

By December 2020, 6,950 articles were created about COVID-19 in 188 languages with contributions from more than 97,000 editors. These pages received close to 580 million pageviews, with a record of more than 10 million pageviews on a single day—March 23, 2020 (Wikipedia and COVID-19, 2020). As of June 2024, more than 2,400 English-language articles in Wikipedia were related to COVID-19 or within the scope of “Wikipedia: WikiProject COVID-19” (2021). Relevant articles include the major topics, hereafter referred to as the “big four”: “COVID-19” (the disease), “SARS-CoV-2” (the virus), “COVID-19 Vaccine,” and the “COVID-19 Pandemic.” Cumulatively, these four articles were viewed over 60 million times between January 2020 and December 2022. They averaged more than 86,000 views per day in the first year of the pandemic. These pageview counts do not include the various iterations of these articles in languages other than English. For example, French- and Spanish-language articles about the same topics have cumulatively received more than 7.7 million and 21.2 million pageviews from January 2020 through December 2022, respectively.

The “COVID-19 Pandemic in Canada” article is semiprotected, meaning only registered editors who have made at least 10 edits are preauthorized to contribute. It has been assigned a quality score of B-class and is rated as mid-importance by WikiProject COVID-19. As of June 2024, the article, which received the bulk of its contributions near the beginning of the pandemic, was flagged because of a need for more recent updates. It was created on February 26, 2020, before the World Health Organization (WHO) declared the outbreak of the novel coronavirus a pandemic. As such, it was originally titled “2020 Coronavirus Outbreak in Canada.” According to the page statistics as of June 2024, 604 editors contributed to the article more than 4,500 times. It has been viewed more than 1.8 million times; most views were between article creation and December 2022 (1.7 million). Early in the pandemic (May 2020), its pageviews peaked with an average of 10,000 views per day. The article is nearly 6,000 words long and cites 295 unique references. This page was also a source of data for Google. A search for “COVID-19 pandemic in Canada” in November 2021 yielded statistics boxes about new and active cases generated with data from Wikipedia in conjunction with other sources.

Ontario is Canada’s most populated province or territory. For some Canadian provincial context, the “COVID-19 Pandemic in Ontario” article is also semiprotected. It has also been assigned a quality score of B-class and rated as low importance by WikiProject COVID-19. This article was created on March 13, 2020, 2 days after the WHO declared the outbreak a global pandemic. Based on data from the page statistics, 344 editors have contributed to the article more than 6,200 times. It has been viewed more than 970,000 times, and by May 2020, it had averaged more than 4,800 views per day. As of June 2024, the article is 4,500 words long and has citations to 196 unique references. Like “COVID-19 Pandemic in Canada,” a November 2021 Google search for “COVID-19 pandemic in Ontario” yielded statistics boxes generated with data from Wikipedia, in conjunction with other sources, such as Our World in Data.

It seems safe to say that Wikipedia was frequently used for information about the pandemic in the Canadian context as well as the more specific provincial context of Ontario. This claim can be supported by the active pageviews recorded for the relevant Wikipedia articles but also by more passive user engagement with Wikipedia, wherein Google search results draw data from Wikipedia. While these two Wikipedia articles indicate some level of engagement within the Canadian context, these articles are limited to summarizing knowledge about the pandemic. It is probable that Canadians are also among the users frequenting the “big four” articles. Some evidence to suggest this can be found in the pageview statistics for “COVID-19 Vaccine.” Although not solely responsible for an uptake in pageviews, in late May 2021, the Ontario government announced it would shorten the interval between first and second doses from 3 months to 8 weeks (CBC News, 2021). Internationally, the Johnson and Johnson vaccine was approved in the UK (Taylor, 2021), and the US media introduced the idea of employer vaccine mandates (Diaz, 2021). While the “COVID-19 Pandemic in Canada” and “COVID-19 Pandemic in Ontario” articles remained relatively stable in their pageviews at this time, the COVID-19 vaccine article experienced a significant spike in pageviews, jumping from 20,033 on May 28, 2021, to 47,282 on May 29, 2021. Any or all of these changes to the vaccine landscape, covered by the media, could have contributed to the spike in pageviews, but at best, this would indicate a positive correlation. A causal relationship cannot be determined because the pageview data lacks context.

Wikipedia’s data and statistics, while helpful, are limited in that they only provide insight into engagement insofar as that engagement can be measured by pageview activity or contribution activity. It’s easy to argue that since Wikipedia was accessed frequently, it has a role to play in relieving some of the inequities in health literacy skills that can perpetuate the infodemic. However, if we don’t know how users engage with Wikipedia’s content, such as what they do with the information they access, if anything, our insight into Wikipedia’s potential to provide relief to the infodemic is limited to drawing connections between what is known about health literacy and data that can be difficult to contextualize.

What We Don’t Know

There is limited research investigating why or how people use Wikipedia’s health and medical content. Theories in information behaviour or information practices might be helpful in the development of our understanding of what motivates an individual to seek out or use health information encountered online. In 2012, Johnson and Case described “white, middle-aged women who are members of high socio-economic status (SES) groups and also highly educated” as the typical profile of a high information seeker (Johnson & Case, 2012). This profile is an important consideration when we consider Nutbeam and Lloyd’s (2021) correlation between health literacy and social status. As important as it is to develop a richer understanding of how people use Wikipedia’s health and medical content, it is equally important to acknowledge that any exploration into how people use Wikipedia is limited to the segment of the population who have the privilege of access to this technology in addition to adequate literacy and reading comprehension skills.

Health information behaviour (HIB) can be defined as “the key variables that influence the seeking, receipt, avoidance, sharing, management or use of health information and the outcomes that result from the behaviour” (Smith, 2021, emphasis added). One study serendipitously encountered rich data about Wikipedia in the context of using it for health information (Huisman et al., 2020), but at the time of writing, the only intentional investigation of this nature was conducted by the author of this chapter (Smith, 2023a). This study conducted interviews with individuals who had used Wikipedia’s health and medical information. Through the voices of Wikipedia users, it aimed to add some qualitative context to Wikipedia’s usage. The results do not contribute new knowledge to our current understanding of health literacy. Nor do they position Wikipedia as a possible source of relief for some of the health disparities that inequitable health literacy levels can contribute to. However, it does provide one of the first steps in understanding how Wikipedia’s health content is used and why it is used, and it has the potential to possibly shed more light on what is already known about health literacy and health information behaviour.

Conclusion

Wikipedia is not the solution to health literacy inequities, nor is it, by extension, a solution for disparities in health and health care that are driven by socioeconomic factors. It does not generate health literacy skills, but it can reduce some barriers to health information access created by inadequate health literacy.

It is already known that health literacy is a determinant of health and that one’s health literacy is often influenced by various social or economic variables. It is proposed here that, given what we know about the factors that contribute to individuals’ advanced health literacy skills, Wikipedia’s availability and accessibility to the public, its editorial processes, and its emergence as a health information leader in the COVID-19 pandemic, Wikipedia has an important role to play in ensuring equitable access to important health information during a time when socioeconomic disparities have been amplified. Wikipedia’s “big four” articles related to COVID-19, in conjunction with its frequently accessed content and dutiful coverage of the pandemic in the Canadian context, provide some evidence that Wikipedia has positioned itself highly as a reliable source of plain language health information supported with high-quality evidence from reputable sources.

The very nature of how Wikipedia content is created and curated situates it as a key player in the battle against misinformation, wherein our biggest challenge is not necessarily the ubiquitous existence and creation of misinformation but rather a public audience that is imbalanced with respect to its capacity to critically appraise, engage with, and make decisions about health information. Research into how the general public uses Wikipedia is needed. It has the potential to provide deeper insight into Wikipedia’s potential to address health literacy and information access inequities and, consequently, to contribute in part to addressing health literacy gaps in a time when equitable access is more important than ever.

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