From mouth taping to the 12-3-30 workout, TikTok practically teems with health trends, some more questionable than others.
But it’s also become a platform that regularly births health or patient influencers – creators who document their personal journeys with bipolar disorder, autoimmune diseases and more. These influencers gather thousands of followers by discussing the symptoms and treatments they’ve tried, and offering a glimpse into their day-to-day lives.
Gen Z and Millennials are increasingly turning to patient influencers for health advice, rather than relying on trained medical professionals. Nearly 18% of the U.S. population, in fact, is turning to social media influencers for healthcare information and guidance around chronic conditions, according to a recent report.
Not surprisingly, then, healthcare marketers have sought to take advantage of influencers’ reach. But as pharma/patient influencer relationships grow, it creates questions about the side effects — such as the large volumes of health misinformation spreading on platforms like TikTok.
A 2022 study published in the Journal of Medical Internet Research delved into the ethics of patient influencers serving as “the next frontier” of DTC pharma marketing. “People are persuaded by powerful stories in the absence of ‘hard’ evidence,” the study authors wrote. “As more consumers turn to the internet as a primary source for health information, consideration needs to be given to how this information affects consumers’ decision-making.”
One self-described patient influencer, Ellen Rudolph, believes popular social media creators should endeavor to ensure that their health information and advice is accurate. Rudolph, known to her more than 84,000 TikTok followers as “autoimmune girlie,” believes that patient influencers should seek to improve health literacy on social media, rather than contribute to eroding it.
After developing a chronic autoimmune condition years ago, Rudolph began posting on TikTok in the hope that she could “help someone navigate their own health journey,” she explained.
After posting a video that went viral, Rudolph said that “it became obvious that millions of people on parallel paths have questions and concerns about the care they’re receiving, or lack thereof, and are looking for others going through similar journeys to share stories and tips… My hope is to help others feel less alone on their autoimmune journey.”
Rudolph now regularly posts videos explaining the progression of her illness and shares tips on reining in her autoimmune disorder. Her content includes discussion of anti-inflammatory foods as well as mental health advice.
Building trust, Rudolph stressed, is essential. “Trust is the most important currency and creators have a responsibility to their followers to do their own research before deciding whether or not to support a specific health trend,” she said. “Disputing false information can be just as important as spreading truthful information on the platform for creators.”
Not every patient influencer will heed that advice, however, and TikTok will likely continue to platform plenty of videos propagating health misinformation. But users can learn how to identify red flags on their own.
Rudolph urged social media users to “trust their guts” and seek out evidence-based research or sources like PubMed. While TikTok can help patients to feel less alone in their health journeys, those patients must learn how to differentiate between trustworthy and untrustworthy creators.
“If you stumble upon a page where the content looks questionable or your intuition is telling you something feels off, listen to it,” Rudolph said. “Following influencers who share firsthand experiences and information about their own journeys can be valuable and empowering, but a TikTok video is not a substitute for medical advice. Always speak with a doctor before implementing these practices yourself.”