Barby Ingle can tell you all about living with chronic pain. Fifteen years ago, while driving to work at Washington State University, a van smashed into her car, twisting her 90-pound frame in her seat. A doctor diagnosed whiplash, put her in a neck brace, and sent her home. But the pain got worse, spreading across her body like lighter fluid set aflame. No fewer than 43 doctors tried to find the source of her agony.
It was seven years before a specialist identified the problem: reflex sympathetic dystrophy, sometimes called complex regional pain syndrome. Infusion treatments got her out of a wheelchair and back on her feet. Ingle started sharing her story, first with a blog, and then a book, and then on social media. Today, she has more than 26,000 Twitter followers who seek her guidance in dealing with insurance, living with chronic pain, and, perhaps most importantly, maintaining hope. To her surprise, she is something of an online celebrity, or perhaps more accurately, a patient influencer.
Just as Snapchat and Instagram and YouTube have influencers, so too does medicine. Chronic diseases occupy an online world of memes, hashtags (#hospitalglam), and people who provide information and insights to communities that too often feel they have no voice. A growing number of companies are hiring these patient influencers to reach, and understand, these folks. And, of course, sell them stuff.
— Amino (@AminoHealth) March 15, 2017
Last month, the Boston company Wego Health launched a web-based platform that introduces pharmaceutical firms, medical device manufacturers, hospitals, and insurers to people like Ingles. Those firms, in turn, pay influencers for access to their experiences, expertise, and followers. Ingles started working with Wego’s beta pilot last year and takes a few jobs a month. Wego…