Infodemiology: Diagnosing and Treating Misinformation during Epidemics

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.

The Bulwork

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/

Welcoming Uncertainty; Managing Risk

The Covid19 pandemic has unquestionably increased the degree of uncertainty that we are all facing. Uncertainty about one’s job security, future income, ability to feed and educate one’s children, access to family support and other social activities all add to our stress levels. I didn’t even mention the uncertainty of whether or not one may contract the coronavirus and become severely ill—or die.

Given the stress that so many people are enduring due to heightened uncertainty, it may come as a surprise that a key theme in a lecture I watched this week was: We should welcome uncertainty; uncertainty is the spice of life!

The talk, Rebuilding the Global Economy Amidst Radical Uncertainty, was given by, Mervyn King, professor of economics and law at NYU – and a Knight of the Garter, which makes him Lord King.

Why should we welcome uncertainty? For starters, the world is full of uncertainty, so no one can avoid living in an uncertain world. It is better to learn how to navigate in an uncertain environment than to convince oneself that new policies or regulations—or more data— can reduce or eliminate uncertainty.

Okay, you may be thinking that if the current state of uncertainty is the spice of life, then I’ll forgo flavor and stick to a bland diet and lifestyle! King’s point is that to thrive in our uncertain world, we should focus on managing risk, where risk is defined as the downside outcome of a plan or strategy.

Risk tolerances vary and what type of risks individuals are comfortable managing differ greatly. Some people enjoy taking physical risks and have fun bungee jumping off of bridges. I’m not one of them.  Other people enjoy exploring opportunities amidst chaos. King describes welcoming uncertainty as the ‘essence of entrepreneurship’. Successful entrepreneurs thrive on finding innovative ways to achieve desired outcomes. I enthusiastically place myself in this segment.

I highly recommend the lecture referenced above, which includes a discussion between Mervyn King and Randall Krozner, professor of economics at the University of Chicago Booth School of Business. It was the first in a series produced by the Booth School of Business. For more information, see: https://www.chicagobooth.edu/road-to-economic-recovery/upcoming-events/global-economy.

Update on Monday, July 27, 2020 at 5:49PM by Janice McCallum

The previous post for the Chicago Booth lecture in the Road to Recovery series didn’t include the link to the actual lecture. Here it is: https://www.youtube.com/watch?v=op2QbNNqMEw. 

Gratitude

My hometown, Braintree, is a suburb of Boston and in the era when I was a child, there were very few black families or households. I knew of only one; let’s call them the Williams family. They had a nice house by the lake, which we passed every day as we walked to elementary school. My brother recently told me that he and his friends would sometimes fish in the lake from the Williams’ backyard. The boys knew that the Wiliams’ wouldn’t kick them out, whereas the neighbors would likely ask them to leave or possibly call the police on the unwanted kids in their private yards.

In fourth grade, I had a black teacher, Mrs. Jones. That was her real name, Mrs. Patricia Jones. Can you imagine being the only black teacher in town? Especially in a town that had almost no black students?

Mrs. Jones recognized that I was a smart kid who had potential and she encouraged me to work harder to demonstrate my capabilities. So, my first report card included some B grades, along with several A grades. I still recall being upset that other classmates received A grades and I knew I was smarter than they were! By the second half of the year, I earned the straight As I thought I deserved (maybe there was a B in phys ed). By that time, Mrs. Jones and I had developed a good rapport. It was a long time ago, so I don’t remember any details of our class interactions. However, I clearly remember corresponding with Mrs. Jones after she left my town and moved to Tulsa after teaching for one year. We wrote to each other a few times, but didn’t stay in contact for long. Remember, I was a 9 year-old child at the time!

In honor of Juneteenth and in the spirit of expressing gratitude[i] to those who have made a difference in one’s life, I offer this small expression of gratitude to Mrs. Jones. I have no idea if she stayed in Tulsa or if she is still alive. But, if anyone knows a former schoolteacher named Patricia Jones in the Tulsa area who would be about 80 years old today, please let her know that she made a positive difference in my life and I am grateful to her.

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[i] This recent lecture by Professor Nicholas Epley of University of Chicago, Booth School of Business, describes the power of expressing gratitude: https://youtu.be/6yB44OBNBB0. See also my friend Patty Sutton’s Grateful Med site, which was designed to help express gratitude to health care workers: https://gratefulmedcards.com/

Public Health Data from NYC DOHMH Now More Accessible

Government agencies can be a goldmine of valuable data – if the miners (i.e., researchers and publishers) know where to find the sources and if they have the know-how to take raw data and turn it into accessible and actionable data. I wrote on this topic in 2011 when ‘data liberaçion’ was an emerging hot topic.

Fortunately, there has been progress in promoting the need for transparency & accessibility of data—for researchers and consumers, notably in healthcare. Still, identifying and accessing government data continues to be a time-consuming challenge. 

I’m happy to report on important progress in making public health data more accessible. HealthDataViz, a health data design and visualization firm, working with the NYC DOHMH, has redesigned their public health data portal to include dynamic query, new data visualization tools and more. Read the full press release on the relaunched website here: http://www.healthdataviz.com/2019/11/05/healthdataviz-completes-enhancements-for-new-york-city-dept-of-health-mental-hygiene-website/ 

Valuing Health Data

The New England HIMSS Annual Spring Conference held on May 16, 2019 at Gillette Stadium included a range of speakers who directly—or indirectly—spoke about the uses of data in healthcare. Here are my highlights, seen through my (permanent) #healthdata lens.

Richard Parker, MD, Chief Medical Officer, Arcadia, kicked off the day describing how Arcadia strives to identify the most “actionable” patients from the most “impactable” segments of the provider’s population.

Dr. Parker described the predictive analytics process in broad strokes and referred to the foundational step of aggregating data—including claims data, EHR data, medications data—as “not easy” and that they want all the data they can get their hands on to improve their predictive models. I asked him for more detail on the biggest challenge in aggregating & cleaning the data inputs, the “non-sexy” elements of data science as I called it. For Arcadia, access to EHR data is granted by clients that provide the data feeds and who are provided access to the curated and cleansed aggregated data, as well as the outcomes of the modeling exercises.

 

Dr. Richard Parker

Micky Trapathi, President and CEO, Massachusetts eHealth Collaborative, described interoperability as a “dimmer switch” rather than an “on/off switch”. To put it in my words, interoperability is not a thing or an inherent property of a data set. Rather, it requires common data standards and communications specifications between the parties that want to exchange data. The degree of interoperability depends on how highly specified the data set is and how well the parties exchanging data follow the same specifications.

For the present, FHIR does a good job in defining standards and specifications for limited data items and use cases, but we have a long way to go before data exchange is optimized for a wide range of use cases. Tripathi illustrates the current state with a cube diagram with only a portion of the lower left-hand space completed.

 

Micky Tripathi

Larry Garber, MD, Medical Director for Informatics, Reliant Medical Group, illustrated how Reliant has created a working ecosystem that includes a larger set of data exchange scenarios than those required by current regulations. Reliant has an early mover advantage, as pointed out by my friend Matt Fisher, who has good knowledge of Reliant’s model & history.

@Matt_R_Fisher

Keys to #EMR success from @GetReliant Dr. Garber. Comes from lengthy experience that predates #regulatory forced adoption. Arguable clear advantage. #NEHIMSS 

Dr. Larry Garber

My takeaway from the CIO panel:  hospitals and physician practices are still struggling with understanding the value of data for their everyday purposes of treating patients. However, when shown how aggregated data can be applied in specific areas, such as identifying when a patient needs follow-up or what group of patients need to be prioritized, the value becomes self-evident. Presumably, the ability to recognize the value of data will improve after clinicians gain experience with early use cases that demonstrate improved efficiency and outcomes.

What about the downside of high-value data?

Juhan Sonin, Creative Sandpaper, Director of GoInvo and Lecturer, MIT, who envisioned the home-based healthcare center of the future when he spoke at NEHIMSS two years ago, tackled  some of the  problems associated with extracting  value from health data when access is restricted.  Furthermore, with so much data being generated by all sorts of devices and aggregated by firms that provide profiles and screening criteria to marketers, we’re deep in the age of surveillance. Providing patients/individuals with control or ownership of their own health data is the only way to transform the age of surveillance into a net positive for individuals according to Sonin (and I agree). 

Health Content Advisors’ Recap

In the digital age, where all content is data, we often hear comparisons that “data is the new oil” or “data is the new water”. The Lancet even published an article recently, “Data is the New Blood”. I have two disclaimers to add to those proclamations, both of which were reinforced at the New England HIMSS spring conference:

I)                    If data is the new oil, then we’re still at the stage of figuring out how to refine the data;

II)                  Data doesn’t have value until someone uses the data.

I’d like to thank the New England HIMSS chapter and the volunteers who put together an outstanding program again this year. See more info on the program, speakers, presentations and sponsors here:

http://ne.himsschapter.org/event/new-england-himss-annual-spring-conference-save-date. 

Finally, a special shout-out to E Ink, who not only sponsored breakfast but whose prize I won at the end-of-day raffle. I love my electronic paper wall clock!