TikTok & HS in Skin of Color: Derms Can Fill Knowledge Gaps

The Gap in Online Hidradenitis Suppurativa Information: Why Dermatologist Voices Matter on TikTok

A recent analysis reveals a significant gap in credible medical information surrounding hidradenitis suppurativa (HS) on TikTok, particularly when it comes to representation for people with skin of color. While the platform has become a popular space for patients to share experiences and seek support, the majority of educational content isn’t created by physicians, raising concerns about the accuracy and safety of information circulating online. This finding underscores an opportunity for dermatologists to actively engage on TikTok and provide evidence-based guidance to a growing patient community.

The research, published in JMIR Dermatology, highlights how platforms like TikTok are increasingly shaping patient understanding of HS – from symptom identification and treatment interpretation to overall beliefs about the condition. The study, led by Arsema K. Zadu, MS, a student at Howard University College of Medicine, examined 50 TikTok videos focused on HS in individuals with skin of color.

Patient-Driven Content Dominates the Conversation

Nearly half (48%) of the videos analyzed were created by patients themselves, often centered around personal treatment testimonials. This patient-generated content is valuable for fostering community and sharing lived experiences, but it’s crucial to recognize it isn’t a substitute for professional medical advice. A further 20% of videos were created by board-certified dermatologists, while the remainder came from plastic surgeons (14%), beauty service providers (4%), nurse practitioners (2%), or individuals with unclear professional backgrounds (12%).

The prevalence of non-physician created content is particularly noteworthy given that 18% of the videos included commission-based or sponsored content and most of these were not created by medical professionals. This raises questions about potential conflicts of interest and the promotion of products or treatments without adequate medical oversight.

Popular Topics and Recommended Products

The most frequent topic discussed in the videos was treatments for HS, appearing in 70% of the content. Other common themes included explanations of the condition itself, the challenges of living with HS, and dietary approaches to symptom management. Emerging research has explored the potential role of GLP-1 receptor agonists in managing HS, a topic likely contributing to the discussion.

Specific products frequently mentioned included PanOxyl (Crown Laboratories), appearing in 10% of videos, and Hibiclens washes (Mölnlycke Health Care), recommended in 12%. The researchers emphasize that dermatologists have a role to play in addressing the safety and efficacy of these and other products commonly promoted online.

What In other words for Patients and Providers

The study’s findings underscore the need for increased dermatologist presence on TikTok to provide accurate, evidence-based information to patients. Zadu recommends that dermatologists use the platform to emphasize the importance of seeking a formal diagnosis from a qualified healthcare professional. Delays in diagnosis and treatment can significantly impact the long-term progression of HS, and early intervention is crucial.

Beyond diagnosis, dermatologists can as well address common misconceptions about HS and provide guidance on safe and effective management strategies. This includes discussing holistic approaches, lifestyle modifications, and over-the-counter products, while clearly differentiating between approaches supported by scientific evidence and those that are not.

Building on Previous Research

This research builds upon earlier work by Zadu and colleagues, published in the Journal of Drugs in Dermatology, which found that social media can encourage patients to seek diagnosis and treatment for HS earlier. Understanding the role of social media in pain management is also an vital area of ongoing investigation for HS patients.

Zadu suggests future research should focus on quantifying whether TikTok-based education actually shortens the time between symptom onset, seeking care, receiving a diagnosis, and initiating treatment. Demonstrating a tangible impact on these key timelines would further solidify the value of social media as a tool for improving HS care.

The Broader Context of HS and Digital Health

Hidradenitis suppurativa is a chronic, inflammatory skin condition that causes painful lumps and abscesses, typically in areas where skin rubs together. It can significantly impact quality of life, and effective management often requires a multidisciplinary approach. The global prevalence of HS is estimated to be near 1%, according to recent data, highlighting the widespread need for accessible and accurate information. Global prevalence studies are helping to refine our understanding of the disease burden.

The rise of digital health platforms like TikTok presents both opportunities and challenges for patients and healthcare providers. While these platforms can empower patients to take an active role in their health, it’s essential to ensure they have access to reliable, evidence-based information. The findings from Zadu’s research serve as a call to action for dermatologists and other healthcare professionals to engage in these online spaces and contribute to a more informed and supportive community for individuals living with HS.

Arsema K. Zadu, MS, can be reached at [email protected].