Concern over harmful medical advice from social media influencers

(Press-News.org) Biased or misleading medical advice shared by social media influencers can cause harm and requires coordinated action by governments and platforms to protect the public, argue experts in The BMJ today.

Social media influencers are a growing source of medical advice, say Raffael Heiss and colleagues. More than 70% of young adults in the US follow influencers, and over 40% have purchased products based on their recommendations. 

Yet they warn that influencer advice can be subject to four sources of bias: lack of medical expertise or relevant knowledge, industry influence, entrepreneurial interests, and personal beliefs.

“Such advice can cause psychological, physical, financial, and systemic harm—from inaccurate self-diagnosis and inappropriate treatments to unnecessary spending and higher healthcare costs,” they write. 

A prominent example is celebrity Kim Kardashian, who encouraged her 360 million Instagram followers to have full body screening with magnetic resonance imaging—a test without proven benefits and linked to overdiagnosis, unnecessary interventions, and costs. 

Influencers with health-related credentials can also provide misleading advice. For instance, Eric Berg, a US chiropractor with 14 million YouTube subscribers promotes high dose supplementation while selling his own brand of vitamin D and other supplements, some of which were subject to a legal warning for lead content above safety levels. 

The effect of these biases is magnified by influencers’ ability to form real or one sided (often referred to as “parasocial”) bonds with followers, making them highly persuasive communicators, say the authors.

They acknowledge that some influencers do provide useful health advice including doctors and others who help to debunk common misconceptions, while influencers who are patients themselves may also provide valuable peer support, especially for stigmatised conditions, by creating safe spaces and sharing personal experiences, they write.

Nevertheless, they say maximising the benefits and minimising the harms of influencers’ medical advice will require collaboration between multiple stakeholders, particularly governments and social media platforms. 

Strategies include effective regulation, stronger platform and influencer accountability, and user empowerment through targeted education and access to reliable, fact checked information. 

The authors acknowledge that there is no one-size-fits-all solution, but conclude: “Together, these strategies can help create a safer information environment in which influencers are constructive rather than harmful sources of health advice.”

Regulating and moderating platforms and influencers is necessary, but fostering trust through verified communities, clinician-endorsed forums, and participatory public health campaigns, will be indispensable, say Tina Purnat and David Scales in a linked editorial. 

They discuss how digital platforms, clinical encounters, and community spaces, both online and offline, shape what people see, believe, and do, including how evidence is negotiated in clinical consultations.

“Shared decision making must evolve for the digital age,” they write. “The key is structuring interventions around people’s information environments, where exposure, like exposure to physical environments, shapes health and deserves similar care.”

In a linked feature, Stephanie Santos Paulo speaks to ‘patient influencers’ who have amassed large followings on social media by sharing personal stories of their conditions and care that foster a sense of authenticity and emotional connection with followers.

“I think partly people are finding social media better for answers because it’s not easy to get hold of a medical professional,” says Liam Robertson, whose Instagram page @livingwithulcerativecolitis has 9,300 followers. “It’s almost like a strategy to help them,” he adds. “I don’t feel like they should need that, but we do.”

Lily Mae, whose Instagram account @chronicallylil details her life with Ehlers-Danlos syndrome, endometriosis, and vascular compression syndrome, says: “I wish healthcare professionals would listen and engage more with patient communities online. There’s such a wealth of firsthand knowledge being shared—real stories, symptoms, and lived experiences that could help improve care if more providers took the time to understand them.”

Jen Moore, who posts about endometriosis and adenomyosis on her Instagram account @jen.dometriosis, emphasises the role of patient influencers in signposting followers towards medical professionals. “Unless we involve clinicians in what we're trying to do, nothing's going to change,” she says.

END