Why It’s Hard to Shake Medical Misinformation
By Blake Eligh
Melanie Henry (PGME ’14 & ’15) is a staff physician with Oak Valley Health in Markham, Ontario. In her busy practice, she has more than 900 patients, including many families with young children. As part of her practice, Henry often raises the topic of infant immunizations with patients, such as routine vaccinations for measles, mumps and rubella. What she sometimes hears back are parent worries.
“Often, patients have already done their research online. They know their favourite websites and may be convinced that the vaccines could be harmful to themselves or their children,” explains Henry, vice-chair, community and partnerships with the Temerty Faculty of Medicine’s Department of Family and Community Medicine. “In the moment, there’s nothing I can say to dissuade them from this idea. Giving them a pamphlet from the government won’t move the needle much.”
What Henry is encountering in these conversations is misinformation and fear. It’s a potent combination. Fear can amplify the significance of information that aligns with your deepest anxieties, and embed that information in your memory.
The process through which the brain learns and stores information is called “long-term potentiation” or LTP. It’s a central research focus for neuroscientist Graham Collingridge, a Temerty Medicine physiology professor and the director of the Tanz Centre for Research in Neurodegenerative Diseases. There, Collingridge delves into how memories form at the molecular level in the brain, which he describes as “the most complex machine in the known universe.”
During memory formation, neurons communicate with one another through synaptic connections. Frequent activation strengthens these connections — just as how repetitive weightlifting builds and fortifies muscles. When synapses undergo strengthening through LTP, they become more effective at transmitting information and facilitate the brain’s ability to create and retain memories. Fear can intensify these synaptic connections by prompting the amygdala and the hippocampal regions of the brain to work together to form emotionally charged memories. The stronger the connection, the more likely it will endure over an extended period of time.
“Our memories are associative,” Collingridge says. “We are bombarded with billions of pieces of information and we have to select what’s important. If something happens and it’s particularly pleasurable or fearful, we are more likely to commit it to memory because it’s going to be important for survival.”
Fear may help encode information into memory, he continues. Fear of the unknown can also drive people to seek out information, and when the information they find isn’t reliable, it can lead to adverse health outcomes. Take an announcement earlier this year from Robert Califf, the United States Food and Drug Administration’s commissioner. Califf cited misinformation as one of the primary factors impacting the lifespan of Americans, alongside income, education, race and ethnicity. The U.S. now ranks last among high-income nations for life expectancy, with figures three to five years lower than comparable nations.
It’s about understanding and asking,
‘What do you think and why?’
Califf highlights the internet and the ready availability of often unreliable health information significantly influencing people’s decisions, leading them to make unhealthy choices, such as forgoing vaccinations. In Canada, a separate study involving more than 1,800 Ontarians revealed that “more than half of the participants reported encountering misinformation when seeking information about COVID-19,” and many reported at least one challenge with their information-seeking process.
Teasing out the role of social media in the lightning-quick spread of health misinformation is an evolving area of study. During his psychiatry residency in 2021, Anthony Yeung noticed an uptick in patient requests for assessment related to attention deficit hyperactivity disorder (ADHD), which appeared to be driven by social media.
The observation prompted Yeung (PGME ’21) and colleagues to kick off a study looking at ADHD information on TikTok, an international video platform with 1 billion daily views of user-generated content delivered to its audience through the platform’s algorithm.
After reviewing 400 of the most popular TikTok videos tagged with the #ADHD hashtag, the researchers discovered that approximately half of the videos contained misleading information about ADHD symptoms, diagnosis or treatment. They also found 90 per cent of these videos were created by the general public, and just 10 per cent came from trained health care providers. As Yeung explains, the audience reach of each video they studied was remarkable — averaging 2.8 million views and 30,000 shares.
“In many of the videos, there were no caveats or recommendations to talk to your doctor,” notes Yeung, now a clinical instructor at the University of British Columbia. “From a clinical perspective, many of the symptoms the creators described were so non-specific that while it could indicate a person had ADHD, it could also easily describe symptoms of another psychiatric disorder, or it could be another medical issue like sleep apnea,” he says. “In a 10-second video, there’s not a lot of room for nuance.”
While Yeung acknowledges that the internet has been “net positive” for raising awareness of mental health issues, he emphasizes that health care practitioners need to enhance their digital literacy to provide effective patient care.
“ADHD has entered the public consciousness, and it deserves attention from the medical community to talk about this more,” he says. For Yeung, the discovery underscores the influence of social media in people’s health care decisions, and whether they opt to consult a trained professional.
“The amount of content we are consuming comes at such a fast pace. It can be hard for the average person — and the average clinician — to parse what’s good information and what’s bad information,” he says. “People might form their perceptions of ADHD based on what they see in online videos. The clinical reality is often quite different.”
For Henry, educating patients who express vaccine hesitancy requires patience and time. That means committing to understanding her patients’ perspectives and how they came to be their beliefs. This way, Henry can engage them in an effective, compassionate way while providing clinically sound medical advice. It also means connecting with patients on a personal level.
“Once I had kids, I completely understood why parents are concerned about injecting things into their children’s bodies, and the feeling that you are entirely responsible for them,” she says. Those worries can extend to other decisions, such as choosing between formula or breastfeeding, or introducing solid foods, she adds. She keeps the door open with patients by grounding her approach in curiosity, respect and trust. A hardline approach doesn’t change minds, says Henry.
“As a family doctor, these are the conversations, stories and interactions that I want to be having with people. If I understand where they’re coming from, it becomes a starting point for negotiation. It’s about understanding and asking, ‘What do you think and why? Is there a compromise — an age where you might be more comfortable to revisit this? Is it OK to bring this up next time and see what you’re thinking?,’” she says. “As a clinician, I want to build a relationship with the family and in the end, they almost always choose to have their children vaccinated.” •
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