The global public is in the midst of an infodemic. Described by the World Health Organization (WHO) as “an overabundance of information, accurate and inaccurate, that occurs during an epidemic,” an infodemic overwhelms consumers with conflicting data, often muddied by misinformation, miscommunication, and agendas.
The key driver of this informational onslaught: the media. As coverage of the COVID-19 pandemic has demonstrated, news reports disseminated via television, print, and digital outlets and amplified on social media platforms can, intentionally or not, easily lead to confusion among health consumers. The dangers of an infodemic are so dire that this summer WHO hosted its first Infodemiology Conference specifically to discuss this unique challenge in public health management.
Although information overload and misleading messaging are a particular concern now, the problem precedes COVID-19. When it comes to medical science news, clear and consistent information and advice aren’t a foregone conclusion. And, as health departments and organizations work to counter the negative effects of incorrect information, clinical practitioners are on the front lines, working to keep their patients safe and well informed. Even during “normal” times, it’s increasingly difficult to counteract the effects of the incomplete, misleading, and downright inaccurate health information that inundates patients on a daily basis.
The Pros and Cons of Available Information
Consumers, particularly younger consumers and those with a higher education, tend to turn to their computers or mobile devices for information (Cogent Social Sciences. 3:1; DOI: 10.1080/23311886.2017.1302785). And although the internet can be an invaluable resource, clearly it isn’t an objective medical expert.
“The fact that everyone can have a microphone and a platform means it’s really easy for people to latch on to a certain media source that may be reputable in some circumstances but could also be completely off base,” said Kevin Sykes, PhD, MPH, research assistant professor and director of clinical research at the department of otolaryngology–head and neck surgery at the University of Kansas School of Medicine in Kansas City, Kan. “It’s difficult for the public to know how to consume information in that case.”
Evaluating the validity of online information has become even trickier as companies seek to market their merchandise or services in the guise of objective information. “[With the internet], the source of the material may not be obvious,” said Erich Voigt, MD, associate professor of otolaryngology–head and neck surgery and director of the division of general otolaryngology at New York University Langone Health in New York City, and host of The Otolaryngology Show on Sirius XM Doctor Radio. “When a person searches the internet for their symptoms or for a disease, search engines may provide links to paid advertisers as opposed to medical sites. There may be biased information that doesn’t provide proper guidance or appropriate perspective.”
That said, scouring the internet to find information about health concerns or answer questions isn’t necessarily a bad thing, said Jed Grisel, MD, an otolaryngologist at Texoma ENT & Allergy in Wichita Falls, Texas. “There are many credible sources out there, and information is more accessible than ever. I try to remember that a patient searching for information online is a sign that they are taking their health responsibility into their own hands,” he said. “The downside of getting information through these channels, however, is that the sheer volume of information means that many times the information is either partial, not applicable to that particular patient, or flat-out incorrect.”
To help keep her patients from accessing bad information, Marilene Wang, MD, professor in the department of head and neck surgery at the UCLA David Geffen School of Medicine in Los Angeles, cautions her patients about internet searches. “I recommend that they stick with well-respected university and health systems’ websites and newsletters and avoid believing sensational stories they see on social media,” she said.
The accessibility, immediacy, and global reach of social media platforms like Facebook and Twitter wield undeniable power. One false post can serve to distract, harm, confuse, and stir up discord. “Information from social media sites may reflect the opinion of the individual who posts it, and the information may spread quickly without having undergone careful fact checking. Research findings may be misinterpreted or taken out of context, leading to rapid spread of misinformation,” said Dr. Wang. “An example would be when early reports of the efficacy of hydroxychloroquine and azithromycin for COVID-19 were propagated. Soon afterward, with careful review of data and further results from randomized clinical trials, these initial findings couldn’t be confirmed.”
Our research has shown that patients definitely trust their providers, and they value information that comes directly from them. —Kevin Sykes, PhD, MPH
Even the best intentions at disseminating information can go south, noted Dr. Sykes. “For example, a reputable organization such as the Centers for Disease Control [CDC] or WHO may issue a public service announcement for distribution to the media,” he said. “In public health, there’s a sort of subgroup that does public messaging, and these individuals are often stretched so thin that they’re unable to make sure the message comes through in a clear fashion. So, when the reputable organization produces a massive press release, they leave journalists or others to cherry pick certain parts of the messaging.”
Print and television media, which are more likely to be used by the elderly, people in lower socioeconomic groups, and those at lower education levels, also have their pros and cons, said Dr. Voigt (Cogent Social Sciences. 3:1; DOI: 10.1080/23311886.2017.1302785) “Hopefully, the content has been properly edited by the publisher and written and presented in an organized, easy-to-understand format by a healthcare expert. But this information can be outdated. Television media stories may not be relevant to the viewer at the time they’re presented.”
How News Gets Ahead of Science
Although the pace of scientific research and the global news cycle have both accelerated dramatically in recent years, the nature of science itself hasn’t changed, and this mismatch has led to unique challenges in the medical news world. “People are unaccustomed to how science develops over time, and how we change our opinions on a frequent basis as more information comes to us,” explained Dr. Sykes. “For instance, we’ve learned an enormous amount about head/neck cancer in the last decade, and much of that has been related to human papillomavirus (HPV). But when HPV was first implicated in head/neck cancer, even at scientific meetings you’d get conflicting information from two different presenters. It sorted itself out over time, and now we have a general consensus.
“But when it comes to an emerging infectious disease like COVID-19, we’re stuck learning on the fly in front of everyone,” he continued. “That has put us in a very awkward position, where someone like Dr. Anthony Fauci says, ‘No masks are necessary’ and a month later is put in the position of saying, ‘We really should be wearing masks.’ Uncertainty is used to attack credibility, when the uncertainty is just the reality of a world in which we learn new things every day. Communicating that to the general public is very difficult.”
Dr. Wang has experienced this disconnect on a firsthand basis. “In my own research of curcumin in head and neck cancer, we have published preclinical and early phase I data demonstrating its efficacy in suppressing cancer growth,” she explained. “After publication of these papers, the general media will report on the findings, but often the public doesn’t understand the extensive further research and testing needed before a drug is ready for clinical use. I continue to get email inquiries from around the world, asking about using curcumin for a variety of conditions. I have to explain that our studies are being done on a specific type of cancer, and further clinical trials are necessary before treatment can be recommended for patients.”
Currently, preprint servers such as BioRxiv and medRxiv allow for rapid sharing of study data among scientists, encouraging valuable transparency and collaboration. However, because these data are printed before they’ve undergone thorough peer review, their relevance might be limited, said Dr. Wang. “Other scientists should recognize this limitation, but the general public may not. Preliminary results may be misinterpreted. For example, preclinical data from a new cancer treatment that shows promising results in vitro and in animal models have a long way to go before being applicable for human use,” she said.
Otolaryngologists report numerous instances of patients who are confused or misinformed regarding their specific health issues. Frequently, a diagnosis of head/neck cancer brings up many questions and the potential for confusion. “From my experience, any news about treatment related to cancer generates the most interest, and sometimes very preliminary data, which, while promising, are misrepresented or misunderstood by the public to be a new ‘cure,’” said Dr. Wang.
A continual stream of cancer-related news sometimes adds fuel to the fire. “With cancer, patients will apply the worst-case scenarios to their specific situation, which usually aren’t applicable,” said Dr. Grisel. Here, the internet can be a friend or foe, with reliable information available from sources such as the National Cancer Institute (NCI), National Institutes of Health (NIH), and the AAO-HNS. A simple Google search of symptoms, however, can easily send a patient into a tailspin. “When we hear a cancer diagnosis, there’s this sort of assumed death sentence because we’ve been cultured to think that this is how cancer manifests in our lives,” said Dr. Sykes, noting that anxious patients may have difficulty navigating the wide spectrum of prognoses among the many types and stages of cancer.
Ankyloglossia, or tongue tie, is another frequently misunderstood otolaryngological condition, said Dr. Grisel. “There are ‘moms’ Facebook groups’ dedicated to convincing parents that ankyloglossia is a serious health problem. Parents are taught to believe that if the physician doesn’t recommend intervention in every situation, it means they shouldn’t trust that doctor.” The danger here, Dr. Grisel said, is that the parents may then find “an unscrupulous physician somewhere to recommend a procedure” when it isn’t warranted.
Otolaryngologists also cite hypothyroidism, viral upper respiratory symptoms, and obstructive sleep apnea (OSA) as areas where patients are often misinformed. “Patients tend to misdiagnose themselves based on internet searches,” said Dr. Voigt. “They might misinterpret their upper respiratory symptoms as a ‘sinus infection’ or interpret information on snoring and OSA to conclude that they may die in their sleep.”
Although as a provider it can be frustrating to have patients challenge your information or guidance, Dr. Grisel urged forbearance. “It’s easy to feel discredited or threatened when a patient says, ‘But I read x online’ after hearing your recommendation,” he acknowledged. “I try to resist that feeling and incorporate what they’ve learned into a more comprehensive understanding of the situation. I never discourage people from searching out information, as I feel that only serves to undermine the trust they have in you.”
I recommend that they stick with well-respected university and health systems’ websites and newsletters and avoid believing sensational stories they see on social media. —Marilene Wang, MD
Physicians can, however, advise patients on how to find trustworthy information between visits. “I tell my patients that many respected medical institutions and hospitals have websites and newsletters written in easy-to-understand language for patients, with the latest information about various diseases,” said Dr. Wang. “Relevant research updates are also presented, with care to include peer-reviewed, evidence-based studies. These websites usually contain links to other resources, including the CDC, NIH, and NCI.”
Combatting misinformation requires a multidisciplinary approach that goes well beyond the clinical setting. The reality is that both doctors and patients are under pressure to make the most of their limited time together. “The hardest thing facing providers today is the short amount of time they have to communicate important messages to patients,” said Dr. Sykes. Consequently, patients are left with unanswered questions that they may not have the time or presence of mind to ask during their appointment. Meanwhile, providers need to prioritize the key bottom-line information they want to give to patients.
However, there is good news to report: “Our research has shown that patients definitely trust their providers, and they value information that comes directly from them,” said Dr. Sykes. Otolaryngologists can use this advantage to dispel any misconceptions patients have.
Linda Kossoff is a freelance medical writer based in Woodland Hills, Calif.