Lori Inselman of Langhorne has struggled with weight her entire life. At 57, she recalls the torment of “being the heavy kid on the block and getting made fun of.”
For decades, Inselman tried every diet around, her weight bouncing up and down. But that changed two and a half years ago when she met Janine Kyrillos, director of Jefferson’s Comprehensive Weight Management Program at Bala Cynwyd, who put her on a ketogenic form of eating — low carbohydrate, high fat — and admitted her to her closed Facebook group of Kyrillos’ other patients.
In this virtual forum, Inselman met other people who were struggling with the same issues she was, and she began to feel less alone. Inselman lost 60 pounds during the first year with Kyrillos and has been able to keep most of it off. Plus, she has contact with Kyrillos after hours through the Facebook group.
“This Facebook group is her way of being supportive outside of her office,” Inselman said.
For Inselman, as for so many patients these days, using social media as a tool for seeking medical help has become a crucial part of her treatment and/or recovery. And Kyrillos is just one of a rising tide of doctors who are turning to Facebook, Instagram, Twitter, and YouTube as a way to combat disinformation, to stay in touch with their patients, and to bolster and educate them, while at the same time trying to navigate what boundaries are appropriate.
“I’m limited in how much support I can offer in the office,” Kyrillos said. “So [the Facebook group] is a way they feel like they’re more connected to me in a more global way.”
Austin Chiang, assistant professor and director of the endoscopic bariatric program at Jefferson Health, is also the hospital’s “Chief Medical Social Media Officer.” He earned the title in August after being hired onto the Jefferson faculty.
In addition to helping the hospital with its social media use, he is creating the Association for Healthcare Social Media, a group for doctors on social media that will launch later this month. The goal is to create a professional society that provides guidance on developing best practices for social media and to “legitimize what we’re doing here for those of us who are using [social media] actively as an educational tool.”
Social media can help put issues in the proper context for patients. “And sometimes reading something is more helpful than hearing it,” Chiang said.
Plus, Chiang added, a lot of times patients “don’t know what’s accurate and what’s not” on social media. “They’re being bombarded with disinformation,” he said. By using social media effectively, doctors can provide evidence-based information to dispel the many health myths peddled by so-called “influencers” Chiang said.
“On social media it’s easy to package oneself to look legitimate and look like you are trained when you are not,” Chiang said.
“The issue of quackery on social media isn’t really a novel issue because we’ve had quacks on television and radio,” said University of Pennsylvania bioethicist Dominic Sisti, director of the Scattergood Program for Applied Ethics in Behavioral Health Care. “What social media does is amplifies it [quackery] and makes it viral in a way.”
Sisti said “fake medical news or content” on social media “draws on people’s desperation and exploits it.” It’s the “snake oil problem,” he said.
That’s why groups like Chiang’s Association for Healthcare Social Media are becoming so important, said Sisti, who recently co-authored a paper for The Hastings Center Report, “Social Media, e-Health, and Medical Ethics.”
Sisti and his colleagues suggest that “when posting online, practitioners ask themselves, ‘How comfortable would I be with my patients seeing this information?’ ”
This becomes a huge issue for psychiatrists, psychologists, and therapists using social media since professional distance has been considered crucial to the relationship between mental health clinicians and patients.
“One has to be cognizant of how describing one’s own experiences with mental health might affect your relationship with your patient,” Sisti said. “If you’re a psychiatrist with mental illness, it might help you connect with a particular patient, but it also might make your other patients a little wary of you. The stigma doesn’t go away just because you’re a clinician. You’re expected to be healthy all the time. Clinicians should be really thoughtful about when or if to talk about their own health.”
Drew Ramsey, a psychiatrist at Columbia University, and author of several books, including Fifty Shades of Kale, said that “all mental health professionals who are on social media do a lot of hand-wringing around what our colleagues and patients think, and I think it forces us to make responsible choices.”
While he never reveals information related to his patients, Ramsey said he uses social media “to put out some positive vibes and information, and hopefully it reaches the right people.”
Ali Mattu, a clinical psychologist at Columbia University, said he started his YouTube channel, “The Psych Show,” after a patient showed him a video that she said had helped her but that “was not based in science or evidence and was in some ways giving harmful information.”
So Mattu went on a hunt to find something reputable that his patient could relate to. Ultimately, he ended up hosting his own YouTube channel on which he covers topics ranging from managing stress to how to talk to people about your mental illness. His show has about 38,000 subscribers.
But using social media as a tool in his practice has also been tricky, Mattu admitted.
“I have to have these conversations with my patients that if we encounter each other online, I’m not going to say anything to you or follow you,” Mattu said. “I don’t want to put you in a position where you would have to break confidentiality.”
Mattu never reveals anything about his patients, adding that if he speaks about a patient in his show, it is always a composite of many different people.
Kyrillos said she struggles with the idea of posting anything personal on the Facebook group she started.