Infodemiology: Diagnosing and Treating Misinformation during Epidemics
Friday, August 21, 2020 at 12:37PM Infodemiology Podcast Episode on HealthHats
Finding trustworthy sources of medical information has never been easy. Not even for those with a medical degree. For non-professionals without a medical education or training in health literacy, knowing whether to believe information found on the Web or passed along from a friend or relative is mind-boggling. In our current era, when we are facing an historic pandemic, the need for trustworthy information to guide everyday choices is high. But, this era is also rife with misinformation on the Web and through social media sites.
As I say in a recent interview with Danny van Leeuwen for this HealthHats podcast*, misinformation and using disinformation for political purposes isn’t a new phenomenon. However, the ease with which one can create and spread misinformation on social media sites like Facebook, YouTube, Instagram, Twitter and others has resulted in a pandemic of misinformation related to Covid19. Most everyone, including well-educated people with medical training, needs some guidance to discern the bad from the good when new stories about the coronavirus cross their desks or appear on their phone at a pace and intensity that rivals weather reports during hurricane season.
The term, infodemiology, was coined by Gunther Eysenbach 20 years ago, to refer to the study of health information and disinformation and more specifically to identify areas where misinformation is present and help guide people to high-quality information.
The World Health Organization (WHO) is using the term infodemiology to focus attention on the problem of misleading information and false claims related to the current Covid19 epidemic. As part of their effort, WHO recently convened a conference on Infodemiology: https://www.who.int/news-room/events/detail/2020/06/30/default-calendar/1st-who-infodemiology-conference.
Shortly after the WHO event, Danny van Leeuwen, who uses the Twitter handle @HealthHats, posted a podcast episode that touched on the topic of managing misinformation in the Covid19 era. I am a big fan of the Health Hats podcasts, and I commented on the post that Danny may want to take a look at what the WHO is doing. My comment led to an invitation to join Danny to record an episode of Health Hats.
In the podcast, we discuss techniques for searching for health information and assessing the trustworthiness of information found online. To oversimply, my advice can be boiled down to: know the source of the information. Is it published by a well-known source whose bias you are familiar with (whether the bias is for high-grade medical evidence or for attracting followers in order to monetize them directly or indirectly)? Is it posted by a friend who is not an expert in healthcare, but believes the information based on personal experience? When information is shared, can you identify the source? One of my rules: if the source is obscured and the post asks you to share with everyone so that the message, which may be sentimental and suggest you are helping someone in need, reaches a large number of people, skip over that message, don’t read it, and don’t share with anyone. It is almost certainly clickbait and is being used to categorize you for targeted campaigns in the future.
One further suggestion if you want to help curb the spread of misinformation, don’t link to the questionable site. If you’re commenting on a post with misinformation, don’t retweet or share the original post, because you will lead more people to click through to the site, which is precisely what the publisher of the site wants. For scammers, the more hits, the better! (This tip from First Draft one of the sites listed in the references below.)
The problem of untrustworthy health information may not be new, but it has grown to a fever pitch (forgive the pun) in the era of Covid19. With this novel virus, treatment plans are in constant flux and information is coming in from all corners of the earth, so it is easy to dismiss an argument that seems counter to previous knowledge. Yet, in the case of something with so many unknowns, today’s breakthrough in understanding how to treat Covid19 may be tomorrow’s disappointment. The pace of new knowledge and the pace at which that knowledge can spread worldwide via social media creates a dilemma for publishers who want to manage disinformation and not risk harming the hard-earned level of trust they’ve built by publishing new stories that may not be fully vetted.
In the podcast, we cover a wider range of topics related to consumer health sources and patient communities. You can listen here: https://www.health-hats.com/infodemiology-too-much-not-enough/. Better yet, subscribe to the Health Hats podcast on your favorite podcast app. It’s one of my favorite podcasts and I’m so pleased to now count myself among the interviewed guests.
Getting Meta: Managing abundance of information sources about managing overabundance of misinformation
Below, I list the references that are mentioned in the podcast, along with one new source that I discovered on a webinar earlier this week, produced by WCG Clinical, featuring David Rand and Wenora Johnson. Rand is Professor of Management Science and Brain and Cognitive Sciences at MIT and has been studying misinformation patterns on social media; Johnson is a cancer researcher and patient advocate.
It has occurred to me that I find new articles or am reminded of a source that works to fight misinformation and increase information literacy every day. One could say we have an overabundance of information about managing the overabundance of misinformation online. So, I’ve decided to create a list of references that will be useful to myself and others who are interested in the same objectives. I’ll outline my plans in a follow-up blog post. Suggestions are welcome.
One final note, the term “infodemiology” has been used in a different, but related context. More than a decade ago, I was using the term to describe the use of data analytics to discern disease outbreaks on social media sites, based upon terms that people were using in their searches combined with location information. At that time, Google Flu Trends was the best-known application. Google Flu Trends morphed into Google Trends and Google chose to prioritize more popular topics for general consumption, like the Kardashians and sports, instead of epidemiological research topics. Today, this type of analysis is more likely to fall into the category of social media surveillance. The list below includes a couple of references to posts on the Society for Participatory Medicine’s blog where comments on infodemiology were shared between Susannah Fox, John Grohol, me and others.
Resources and references:
*Podcast episode with transcript: https://www.health-hats.com/infodemiology-too-much-not-enough/
https://pubmed.ncbi.nlm.nih.gov/12517369/ (Gunther Eysenbach’s 2002 article on Infodemiology)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1839505/ (Gunther Eysenbach’s 2006 article on Infodemiology)
https://pubmed.ncbi.nlm.nih.gov/32310818/ (April 2020 article, where infodemiology relates to the study of info usage patterns.)
Fulltext link for 2020 article: https://www.jmir.org/2020/4/e16206/
WHO Infodemiology Conference webpage: https://www.who.int/news-room/events/detail/2020/06/30/default-calendar/1st-who-infodemiology-conference
Twitter thread on WHO Infodemiology conference: https://twitter.com/juansarasua/status/1277596552719224833
First Draft, UK org fighting misinformation, which participated in the WHO Infodemiology conference: https://firstdraftnews.org/ Check out Information Disorder report on their site.
For understanding medical research studies, Between The Lines, a book by Marya Zilberberg, MD: https://www.amazon.com/Between-Lines-Finding-Medical-Literature/dp/0985456205/ref=cm_cr_arp_d_product_top?ie=UTF8
https://participatorymedicine.org/epatients/2008/05/two-research-papers-published-on-patientslikeme.html (JM comment on infodemiology on post in Society for Participatory Medicine (S4PM blog).
https://participatorymedicine.org/epatients/2009/09/health-it-policy-e-patients-want-access.html (See JM comment to Susannah Fox’s post of S4PM blog).
Medical Library Association (MLA): https://www.mlanet.org/page/find-good-health-information
National Library of Medicine (NLM): http://www.healthfinder.gov/ ; https://medlineplus.gov/
Merck Manual, Consumer Edition: https://www.merckmanuals.com/home
Also mentioned consumer health sites: Healthline.com, EveryDayHealth.com, WebMD.com, MayoClinic.org and Patient community sites: PatientsLikeMe.com, Inspire.com.
Studies and articles by David Rand, PhD, MIT:
Pennycook, G., McPhetres, J., Zhang, Y., Lu, J. G., & Rand, D. G. (in press). Fighting COVID-19 misinformation on social media: Experimental evidence for a scalable accuracy nudge intervention. Psychological Science.
The Right Way to Fight Fake News, March 24, 2020, The New York Times (op-ed).
WCG Clinical Webinar: https://www.wcgclinical.com/events/covid-19-webinar-series/
For full list, see: http://davidrand-cooperation.com/