It takes one to know one: exploring patient dialogue on rosacea web-based platforms and their potential for significant harm

Abstract

Background: Rosacea is a non-curable skin condition, leading patients to turn self-management options from web-based platforms. Self-management can be dangerous possibly under-reported.

Aim: To discover the extent of online material and determine the potential for harm influenced by rosacea internet sources.

Material and methods: Material analyzed included search engines, apps, YouTube, forums and Facebook groups. As Facebook and forums were most active, they became the core focus. A passive ‘fly on the wall’ approach allowed observation of user posts and their content.

Results: Three broad categories of dialogue were identified: prescribed medications, non-prescribed remedies and, most commonly, posts aimed to elicit emotional support. From this, positive and negative influences were identified. Negative influences were divided into four domains: physical harm, financial harm, emotional harm, and detrimental influences on patient-doctor relationships.

Conclusions: Rosacea patients may be susceptible to rely on peer-generated information. Forums can have detrimental outcomes, primarily due to lack of monitoring and the potential for misplaced trust between fellow sufferers, encouraging others to try potentially harmful alternative remedies. Lack of monitoring allows the spread of inaccurate information, which can result in harm. Medical practitioners should be aware of trending online dialogue and self-treatment remedies to facilitate patient safety.

Keywords:

• Rosacea
• internet
• alternative medicine
• support
• harm
• apple cider vinegar
• hydrogen peroxide
• melanotan
• dermatology
• online

Acknowledgements

With thanks to Dr A. Affleck for his supervision.

Disclosure statement

No potential conflict of interest was reported by the author.