Defining Misinformation and Related Terms in Health-Related Literature: Scoping Review

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Abstract

Background

Misinformation poses a serious challenge to clinical and policy decision-making in the health field. The COVID-19 pandemic amplified interest in misinformation and related terms and witnessed a proliferation of definitions.

Objective

We aim to assess the definitions of misinformation and related terms used in health-related literature.

Methods

We conducted a scoping review of systematic reviews by searching Ovid MEDLINE, Embase, Cochrane, and Epistemonikos databases for articles published within the last 5 years up till March 2023. Eligible studies were systematic reviews that stated misinformation or related terms as part of their objectives, conducted a systematic search of at least one database, and reported at least 1 definition for misinformation or related terms. We extracted definitions for the terms misinformation, disinformation, fake news, infodemic, and malinformation. Within each definition, we identified concepts and mapped them across misinformation-related terms.

Results

We included 41 eligible systematic reviews, out of which 32 (78%) reviews addressed the topic of public health emergencies (including the COVID-19 pandemic) and contained 75 definitions for misinformation and related terms. The definitions consisted of 20 for misinformation, 19 for disinformation, 10 for fake news, 24 for infodemic, and 2 for malinformation. “False/inaccurate/incorrect” was mentioned in 15 of 20 definitions of misinformation, 13 of 19 definitions of disinformation, 5 of 10 definitions of fake news, 6 of 24 definitions of infodemic, and 0 of 2 definitions of malinformation. Infodemic had 19 of 24 definitions addressing “information overload” and malinformation had 2 of 2 definitions with “accurate” and 1 definition “used in the wrong context.” Out of all the definitions, 56 (75%) were referenced from other sources.

Conclusions

While the definitions of misinformation and related terms in the health field had inconstancies and variability, they were largely consistent. Inconstancies related to the intentionality in misinformation definitions (7 definitions mention “unintentional,” while 5 definitions have “intentional”). They also related to the content of infodemic (9 definitions mention “valid and invalid info,” while 6 definitions have “false/inaccurate/incorrect”). The inclusion of concepts such as “intentional” may be difficult to operationalize as it is difficult to ascertain one’s intentions. This scoping review has the strength of using a systematic method for retrieving articles but does not cover all definitions in the extant literature outside the field of health. This scoping review of the health literature identified several definitions for misinformation and related terms, which showed variability and included concepts that are difficult to operationalize. Health practitioners need to exert caution before labeling a piece of information as misinformation or any other related term and only do so after ascertaining accurateness and sometimes intentionality. Additional efforts are needed to allow future consensus around clear and operational definitions.

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Most cited references 63

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The spread of true and false news online

Sinan Aral, Soroush Vosoughi, Deb Roy (2018)

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How to fight an infodemic

John Zarocostas (2020)

WHO's newly launched platform aims to combat misinformation around COVID-19. John Zarocostas reports from Geneva. WHO is leading the effort to slow the spread of the 2019 coronavirus disease (COVID-19) outbreak. But a global epidemic of misinformation—spreading rapidly through social media platforms and other outlets—poses a serious problem for public health. “We’re not just fighting an epidemic; we’re fighting an infodemic”, said WHO Director-General Tedros Adhanom Ghebreyesus at the Munich Security Conference on Feb 15. Immediately after COVID-19 was declared a Public Health Emergency of International Concern, WHO's risk communication team launched a new information platform called WHO Information Network for Epidemics (EPI-WIN), with the aim of using a series of amplifiers to share tailored information with specific target groups. Sylvie Briand, director of Infectious Hazards Management at WHO's Health Emergencies Programme and architect of WHO's strategy to counter the infodemic risk, told The Lancet, “We know that every outbreak will be accompanied by a kind of tsunami of information, but also within this information you always have misinformation, rumours, etc. We know that even in the Middle Ages there was this phenomenon”. “But the difference now with social media is that this phenomenon is amplified, it goes faster and further, like the viruses that travel with people and go faster and further. So it is a new challenge, and the challenge is the [timing] because you need to be faster if you want to fill the void…What is at stake during an outbreak is making sure people will do the right thing to control the disease or to mitigate its impact. So it is not only information to make sure people are informed; it is also making sure people are informed to act appropriately.” About 20 staff and some consultants are involved in WHO's communications teams globally, at any given time. This includes social media personnel at each of WHO's six regional offices, risk communications consultants, and WHO communications officers. Aleksandra Kuzmanovic, social media manager with WHO's department of communications, told The Lancet that “fighting infodemics and misinformation is a joint effort between our technical risk communications [team] and colleagues who are working on the EPI-WIN platform, where they communicate with different…professionals providing them with advice and guidelines and also receiving information”. Kuzmanovic said, “In my role, I am in touch with Facebook, Twitter, Tencent, Pinterest, TikTok, and also my colleagues in the China office who are working closely with Chinese social media platforms…So when we see some questions or rumours spreading, we write it down, we go back to our risk communications colleagues and then they help us find evidence-based answers”. “Another thing we are doing with social media platforms, and that is something we are putting our strongest efforts in, is to ensure no matter where people live….when they’re on Facebook, Twitter, or Google, when they search for ‘coronavirus’ or ‘COVID-19’ or [a] related term, they have a box that…directs them to a reliable source: either to [the] WHO website to their ministry of health or public health institute or centre for disease control”, she said. Google, Kuzmanovic noted, has created an SOS Alert on COVID-19 for the six official UN languages, and is also expanding in some other languages. The idea is to make the first information that the public receive be from the WHO website and the social media accounts of WHO and Dr Tedros. WHO also uses social media for real-time updates. WHO is also working closely with UNICEF and other international agencies that have extensive experience in risk communications, such as the International Federation of Red Cross and Red Crescent Societies. Carlos Navarro, head of Public Health Emergencies at UNICEF, the children's agency, told The Lancet that while a lot of incorrect information is spreading through social media, a lot is also coming from traditional mass media. “Often, they pick the most extreme pictures they can find…There is overkill on the use of [personal protective equipment] and that tends to be the photos that are published everywhere, in all major newspapers and TV…that is, in fact, sending the wrong message”, Navarro said. David Heymann, professor of infectious disease epidemiology at the London School of Hygiene & Tropical Medicine, told The Lancet that the traditional media has a key role in providing evidence-based information to the general public, which will then hopefully be picked up on social media. He also observed that for both social and conventional media, it is important that the public health community help the media to “better understand what they should be looking for, because the media sometimes gets ahead of the evidence”.

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Systematic Literature Review on the Spread of Health-related Misinformation on Social Media

Yuxi Wang, Martin Mckee, Aleksandra M. Torbica … (2019)

Contemporary commentators describe the current period as “an era of fake news” in which misinformation, generated intentionally or unintentionally, spreads rapidly. Although affecting all areas of life, it poses particular problems in the health arena, where it can delay or prevent effective care, in some cases threatening the lives of individuals. While examples of the rapid spread of misinformation date back to the earliest days of scientific medicine, the internet, by allowing instantaneous communication and powerful amplification has brought about a quantum change. In democracies where ideas compete in the marketplace for attention, accurate scientific information, which may be difficult to comprehend and even dull, is easily crowded out by sensationalized news. In order to uncover the current evidence and better understand the mechanism of misinformation spread, we report a systematic review of the nature and potential drivers of health-related misinformation. We searched PubMed, Cochrane, Web of Science, Scopus and Google databases to identify relevant methodological and empirical articles published between 2012 and 2018. A total of 57 articles were included for full-text analysis. Overall, we observe an increasing trend in published articles on health-related misinformation and the role of social media in its propagation. The most extensively studied topics involving misinformation relate to vaccination, Ebola and Zika Virus, although others, such as nutrition, cancer, fluoridation of water and smoking also featured. Studies adopted theoretical frameworks from psychology and network science, while co-citation analysis revealed potential for greater collaboration across fields. Most studies employed content analysis, social network analysis or experiments, drawing on disparate disciplinary paradigms. Future research should examine susceptibility of different sociodemographic groups to misinformation and understand the role of belief systems on the intention to spread misinformation. Further interdisciplinary research is also warranted to identify effective and tailored interventions to counter the spread of health-related misinformation online.

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Author and article information

Contributors

Reem A Mustafa:

ORCID: https://orcid.org/0000-0002-2091-0875

Outcomes and Implementation Research UnitDepartment of Internal MedicineUniversity of Kansas Medical Center3901 Rainbow Blvd, MS3002Kansas City, KS, 66160United States1 913 588 6048rmustafa@kumc.edu

Journal

Journal ID (nlm-ta): J Med Internet Res

Journal ID (iso-abbrev): J Med Internet Res

Journal ID (publisher-id): JMIR

Title: Journal of Medical Internet Research

Publisher: JMIR Publications (Toronto, Canada )

ISSN (Print): 1439-4456

ISSN (Electronic): 1438-8871

Publication date Collection: 2023

Publication date (Electronic): 9 August 2023

Publication date PMC-release: 9 August 2023

Volume: 25

Electronic Location Identifier: e45731

Affiliations

[1 ] Outcomes and Implementation Research Unit Department of Internal Medicine University of Kansas Medical Center Kansas City, KS United States

[2 ] Clinical Research Institute, Faculty of Medicine American University of Beirut Beirut Lebanon

[3 ] Division of Cardiology, Department of Medicine Johns Hopkins University School of Medicine Baltimore, MD United States

[4 ] University Libraries American University of Beirut Beirut Lebanon

[5 ] Department of Health Research Methods, Evidence, and Impact McMaster University Hamilton, ON Canada

[6 ] Department of Family Medicine Queens University Kingston, ON Canada

[7 ] Institute of Media Research and Training Lebanese American University Beirut Lebanon

[8 ] Department of Internal Medicine American University of Beirut Beirut Lebanon

Author notes

Corresponding Author: Reem A Mustafa rmustafa@ 123456kumc.edu

Author information

Ibrahim K El Mikati https://orcid.org/0000-0002-0833-4262

Reem Hoteit https://orcid.org/0000-0001-8139-9321

Tarek Harb https://orcid.org/0000-0002-2573-5260

Ola El Zein https://orcid.org/0000-0001-7233-3291

Thomas Piggott https://orcid.org/0000-0003-1643-5386

Jad Melki https://orcid.org/0000-0003-4248-1597

Reem A Mustafa https://orcid.org/0000-0002-2091-0875

Elie A Akl https://orcid.org/0000-0002-3444-8618

Article

Publisher ID: v25i1e45731

DOI: 10.2196/45731

PMC ID: 10414029

PubMed ID: 37556184

SO-VID: e68d0797-b2ba-4af5-8ab5-c79aad5ecdec

Copyright © ©Ibrahim K El Mikati, Reem Hoteit, Tarek Harb, Ola El Zein, Thomas Piggott, Jad Melki, Reem A Mustafa, Elie A Akl. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 09.08.2023.

License:

This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on https://www.jmir.org/, as well as this copyright and license information must be included.

History

Date received : 15 January 2023

Date revision requested : 21 February 2023

Date revision received : 1 June 2023

Date accepted : 7 June 2023

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