When Influence Becomes Policy: The New Age of Health Misinformation

Social media influencers have moved from your feed to federal health agencies—with potentially deadly consequences

Tilly Rose spent more than two decades as what she calls “a medical mystery,” discharged repeatedly from hospitals with no clear diagnosis. In desperation, she turned to Instagram. “At my most desperate, I posted on Instagram and asked the world for ideas,” she recalls. Replies from medical professionals, researchers, and patients flooded her inbox, eventually leading to a diagnosis of multiple vascular compressions and three life-changing surgeries. “Instagram saved my life,” she says.

Rose’s story represents the best of what patient communities on social media can offer: peer support, shared knowledge, and advocacy for those feeling dismissed by the healthcare system. But a trio of new analyses published in The BMJ this week reveals a far more troubling reality—one where the same platforms that helped Rose are increasingly becoming vectors for dangerous health misinformation, commercial manipulation, and the erosion of evidence-based medicine.

The timing could hardly be more significant. As these studies hit medical journals, Health and Human Services Secretary Robert F. Kennedy Jr.’s hand-picked CDC vaccine advisory panel began hearings on whether to end the decades-old recommendation that newborns receive the hepatitis B vaccine within 24 hours of birth—a vaccine credited with reducing pediatric infections by more than 80 percent since 1991.

“The reconsideration of the newborn Hepatitis B vaccination on the established schedule poses a grave risk to the health of children,” warned medical experts as the hearings commenced on December 4. Kennedy himself has falsely claimed on podcasts that the hepatitis B birth dose is a “likely culprit” of autism—a claim contradicted by decades of rigorous scientific research.

The Four Biases Shaping Health Advice

The BMJ analysis, led by Raffael Heiss of MCI Management Center Innsbruck and Steven Woloshin of the Dartmouth Institute for Health Policy, identifies four key sources of bias undermining the reliability of health influencers: lack of medical expertise, industry influence, entrepreneurial interests, and personal beliefs.

These biases aren’t merely theoretical. The researchers document influencers promoting saffron supplements as alternatives to ADHD medication, recommending vitamin D doses that exceed European safety limits by significant margins, and claiming that cannabis and apricot kernels can cure cancer.

“Such advice can cause psychological, physical, financial, and systemic harm—from inaccurate self-diagnosis and inappropriate treatments to unnecessary spending and higher healthcare costs,” the researchers write. They note that 87 percent of influencer posts about popular medical tests cite benefits, while only 15 percent mention potential harms.

What makes these influencers so persuasive? The researchers point to “parasocial bonds”—one-sided emotional relationships where followers feel intimately connected to content creators they’ve never met. “Their authority rests on three interrelated facets,” the analysis explains: personal connection through shared experiences, perceived authenticity free from institutional constraints, and signaled expertise in their chosen domains.

From Feed to Federal Policy

The concern about health influencers has taken on new urgency as the line between social media personality and policymaker has blurred. In May, President Trump nominated Dr. Casey Means, a wellness influencer with close ties to Kennedy, as surgeon general. Trump praised her “impeccable ‘MAHA’ credentials”—referring to the Make America Healthy Again movement that has become a political force under his administration.

The MAHA movement represents a remarkable fusion of social media influence and federal power. At a recent MAHA Summit in Washington, attendees included not just Kennedy and Vice President JD Vance, but NIH director Jayanta Bhattacharya and FDA chief Marty Makary, alongside wellness influencers like Vani Hari (known online as “Food Babe”) and anti-aging entrepreneur Bryan Johnson.

“I have waited my entire life to see this movement come,” Bhattacharya said at the summit.

The movement’s base includes what analysts call “mom-fluencers”—social media personalities like Zen Honeycutt of Moms Across America and holistic pediatrician Ana-Maria Temple, who collectively reach millions of followers with messages about food additives, seed oils, and vaccine skepticism. In March, the White House hosted a “MAHA Moms Roundtable” featuring many of these influencers.

A new generation has emerged as well, with teenagers gaining large followings by promoting “clean living” principles aligned with Kennedy’s agenda. Health communications experts have expressed concern that much of this content contains misinformation. “The teen MAHA influencers like Lexi and Grace do not have the expertise and training to discuss health topics online,” noted Katrine Wallace, an epidemiologist at the University of Illinois Chicago who debunks questionable health claims.

The Patient Influencer Paradox

Yet dismissing all patient voices online would miss crucial nuance. The BMJ feature by Stephanie Santos Paulo profiles several patient influencers who see themselves filling genuine gaps in healthcare.

Liam Robertson, whose Instagram account @livingwithulcerativecolitis has 9,300 followers, spent three years being told nothing was wrong before receiving his diagnosis. Now he receives up to 100 messages daily from people suspecting they too have the condition. “I think partly that people are finding social media better for answers because it’s not easy to get hold of a medical professional,” he explains—noting that UK patients hoping to see a specialist face waiting lists of 7.4 million people.

Jen Moore, who posts about endometriosis and adenomyosis, facilitates sessions with medical students at Cambridge University, teaching them about patient experiences. “Unless we involve clinicians in what we’re trying to do, nothing’s going to change,” she says.

The challenge arises when personal experience becomes commercialized. As Sneha Dave, founder of Generation Patient and co-author of the BMJ analysis, notes: “The challenge arises when information is commercialised, and companies have a motive to sell embedded within a narrative.”

Robertson describes a “big movement” of influencers encouraging people to abandon their medications, claiming conditions like ulcerative colitis can be “fixed by stopping eating rubbish foods.” He warns of one influencer who made nearly a million pounds selling mushroom tea as a supposed Crohn’s disease cure.

Regulatory Gaps and Global Responses

The BMJ editorial by Tina Purnat of Harvard and David Scales of Weill Cornell Medicine argues that addressing this crisis requires looking beyond individual bad actors to the “architectures of influence” shaping our information environment.

“On social media, platforms profit more from attention than clicks,” they write. “Engagement, not accuracy, drives visibility, as emotionally charged or moral content circulates more widely than evidence based information.”

Various countries are attempting regulatory responses. The EU Digital Services Act requires large platforms to assess and mitigate health risks. France has banned influencers from promoting cosmetic surgery or discouraging chemotherapy, with violations carrying fines up to €300,000 or prison terms. Italy requires high-reach influencers to register with media authorities and follow codes of conduct. China now requires online influencers to show relevant credentials before posting about regulated topics like health.

“All of these measures face obstacles,” the researchers acknowledge. “There is no one-size-fits-all solution.” They call for coordination between governments and platforms, improved fact-checking mechanisms, and investment in public digital literacy.

A Crisis in Trust

As federal vaccine advisors convene this week to reconsider recommendations that have saved countless lives, the stakes of this information crisis become starkly clear. Senator Patty Murray has called on Kennedy to testify before the Senate HELP Committee, describing the proposed changes to hepatitis B vaccination as “a heartless choice to allow babies to die.”

Liver specialist Brian McMahon, who has spent decades treating hepatitis B at a tribal-owned hospital in Alaska, still thinks of the patients he lost before vaccination became routine—including a 17-year-old valedictorian who died of liver cancer weeks before graduation, and an 8-year-old boy whose last words were “I know I am going to die soon.”

The hepatitis B vaccine birth dose, recommended since 1991, is up to 90 percent effective in preventing infection when given in the first 24 hours of life. A comprehensive review of more than 400 studies spanning four decades, released this week, found no evidence that delaying the universal birth dose improves safety, and confirmed it does not cause serious adverse events.

Yet the patient-clinician divide that influencers both exploit and exacerbate shows no signs of healing. As Moore, the endometriosis advocate, puts it: “Doctors are very sceptical of what’s happening on social media; patients are very sceptical of what’s happening in a doctor’s office.”

The question now is whether that skepticism, amplified by algorithms and legitimized by federal appointments, will undermine the public health infrastructure that has protected generations of children from preventable disease.

“The result is that the patient and clinician can sit in the same examination room,” Purnat and Scales write, “yet inhabit entirely different worlds.”

Endnotes

Heiss R, Woloshin S, Dave S, Engel E, Gell S, Willis E. “Responding to public health challenges of medical advice from social media influencers.” BMJ 2025;391:e086061.
Purnat TD, Scales D. “Health information in age of social media and influence.” BMJ 2025;391:r2419.
Santos Paulo S. “The social media influencers your patients are turning to before they get to your clinic.” BMJ 2025;391:r2501.
NPR/KFF Health News. “Doctors warn that delaying hep B vaccine could bring back deadly cases.” December 3, 2025.
CNN. “Kennedy’s handpicked CDC advisers to weigh major change to childhood vaccine schedule.” December 3, 2025.
PBS NewsHour. “RFK Jr.’s CDC panel to debate whether newborns should get lifesaving hepatitis B shot.” December 3, 2025.
Axios. “RFK’s MAHA movement ignited by moms and influencers.” August 31, 2025.
STAT News. “As MAHA turns 1, a look at the movement’s momentum—and cracks forming.” August 25, 2025.
Al Jazeera. “Trump administration taps wellness influencer for surgeon general.” May 8, 2025.
Nature. “Psychedelics and immortality: Nature went to a health summit starring RFK and JD Vance.” November 2025.
The Hill. “Robert F. Kennedy Jr.’s vaccine advisory panel mulls hepatitis B immunization policy change.” December 3, 2025.
Senator Patty Murray, Office of. “Senator Murray Slams Planned Changes to Hepatitis B Vaccine at Upcoming ACIP Meeting.” December 2025.