Two new studies presented at American College of Allergy, Asthma, and Immunology (ACAAI) 2025 Annual Meeting highlight the growing role — and risk — of social media in shaping public understanding of allergic and respiratory diseases. 

Researchers found that while platforms like TikTok can amplify awareness about complex conditions such as alpha-gal syndrome (AGS) and asthma, the social media channels can provide misinformation that outperforms accurate medical content in engagement.

“A growing number of our patients are turning to social media for information, particularly on relatively new but complex allergic conditions like alpha-gal syndrome,” said Nadia Hamid, MD, an allergist at University of Kansas Hospital in Kansas City, who led one of the studies. “We wanted to better understand what kind of information is available online, where these patients are going for information, and how accurate that content might be.”

The first study assessed the 40 most-liked TikTok videos on asthma. Of these, more than a quarter contained partially or fully inaccurate information, including false claims that the condition can be cured by using breathing exercises or that mixing caffeine with inhalers can be fatal. 

The study found that misleading videos received more than triple the engagement of accurate messages, or a median of 1266 likes vs 375 likes. Some videos promoted incorrect pathophysiology, such as claiming that the body needs more carbon dioxide than oxygen. Other speakers said albuterol is addictive or that asthma medicine causes cancer. 

Such messages can “discourage patients from using evidence-based medications, lead to delayed treatment during flares, and create false confidence in ineffective techniques,” said Ishitha Jagadish, MD, an internal medicine resident at the University of Arizona College of Medicine in Phoenix, who led the study. 

Only 22% of the analyzed asthma-related Tik-Tok videos were created by physicians. Across all videos, the average quality and accuracy scores were low, especially among non-physician content creators. Reviewers often disagreed on their assessments, which suggests some of the information was inconsistent and subjective, the researchers noted. 

“Misleading TikTok videos are often short, confident, and emotionally engaging, using personal stories or ‘quick fix’ messaging that feels intuitive and relatable to viewers,” Jagadish said. 

Jagadish advised clinicians who want to make social media videos to “use simple visuals, a single takeaway, plain language, and quick demonstrations.”

In the clinic, Jagadish said she asks patients why the misinformation was so convincing. 

“Then I acknowledge the concern and succinctly explain what’s safe and recommended versus what’s risky or unproven. Patients respond better when the correction is respectful, specific, and tied to an actionable step,” she said. 

Another study presented at the meeting found different results. Hamid and her colleagues examined the top 100 TikTok videos tagged with #alphagal. Among more than 5500 videos they included in their research, only 15 were created by physicians — and over half of those physicians were not allergists. 

Yet physician-created videos were longer and attracted significantly higher engagement, averaging more than 31,000 likes and 830 comments, compared with about 9200 likes and 200 comments for non-physician videos. 

Most non-physician posts were anecdotal and occasionally contained inaccuracies about AGS diagnosis, treatment, and symptom management. 

According to Hamid, misinformation often takes the form of overly broad or misleading recommendations. 

“Online forums and social media platforms are full of anecdotal stories about AGS, and these may or may not be accurate for each individual patient,” Hamid said. “There are also conspiracy theories and lots of recommendations to strictly avoid foods or medications that most patients with AGS do not necessarily have to avoid, such as milk products or gelatin.”

Hamid said physician videos might have gained higher engagement “because audiences value credible, well-organized sources, especially when content is delivered clearly and with empathy.” 

Hamid said physician groups and academic medical centers should help clinicians engage responsibly online. 

“While social media does have its pitfalls, our findings suggest that there is a clear opportunity and perhaps even a responsibility for professional societies and academic centers to support clinicians who are offering accurate, trustworthy information that is easily accessible to patients,” she said.

Farah Khan, MD, an allergist-immunologist at Nationwide Children’s Hospital in Columbus, Ohio, said that every day she encounters at least one patient who has a question about misinformation on an allergy that they found on social media. 

“The problem is when people don’t talk to credible healthcare professionals and then make medical and health-related decisions for themselves and their kids based on stuff that they’re seeing online that may not be vetted,” Khan, who was not involved in the studies, said. 

Jagadish and Hamid called for greater clinician involvement — especially from allergists and pulmonologists — to help correct myths, foster trust, and improve patient education online.

Khan, who has built a following on Instagram by educating viewers on allergies, said the question of whether physicians should also act as influencers is complicated.

“What we’re being asked and demanded to do in clinic by our employers, our hospital systems, patients and parents — and then having to also navigate the social media space — is really, honestly, too much to ask,” she said. Many physicians, she added, create educational content in “their free time and [are] not being compensated for it.”

Clinicians should have protected time to do that, because it takes a lot of time, bandwidth, and energy, she said. 

Still, Khan said clinician voices on social media are vital for countering misinformation. 

Khan, Jagadish, and Hamid reported no relevant disclosures. 

Lara Salahi is a health journalist based in Boston.