Patients’ Vlogs Can Provide Another Form of Engagement, Support

Some docs may question social media’s place in patient care, but the number of YouTube users show it might be worthwhile to cultivate allies online.

YouTube Video blogs are popular time-wasters for many people. But the technology also can be a tool to help patients and physicians connect, some medical researchers say.

"It has a great potential for patient engagement, but we don’t know a lot about it yet,” says Joy L. Lee, PhD, a research scientist at the Regenstrief Institute and Indiana University Center for Health Services and Outcomes Research.

Joy Lee

Lee studies how physicians and patients communicate electronically and co-authored a 2017 report, “Seeing Is Engaging: Vlogs as a Tool for Patient Engagement.” Noticing her younger friends watching YouTube videos whenever they have a few free minutes made Lee wonder whether there was a way doctors could tap into that.

YouTube has given rise to online personalities who share thoughts and observations on any number of subjects — makeup, cooking, pets — and has made information about all sorts of hands-on projects — cooking, exercise, carpentry — accessible worldwide through video.

“I was really marveling in the power of [YouTube] and wondered how it translated to health care and if health care was aware of it,” Lee says.

YouTube says it has more than a billion users. On mobile devices alone, it reaches more 18-to-49-year-olds than any cable TV network in the United States.

“It’s a very powerful platform that these YouTube people have,” Lee says.

She began to search YouTube for patient vloggers —people with certain health conditions who record themselves discussing their maladies, treatment and recovery. Among those with large followings, Lee noticed they revealed a lot about their experiences.

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“Patients are people, and that’s what these videos are showing,” Lee says, “I was surprised at the level of detail they were showing.”

The vlogs can be helpful in different ways. For patients, seeing someone dealing with a similar situation can provide support and understanding. For practitioners, it can provide a window into a patient’s world after he or she leaves a medical office.

“It’s really about educating them about the lives of their patients,” Lee says.

Patients, especially those with chronic conditions, spend so little of their time with their physicians relative to their everyday lives, Lee says. “It’s helpful in different ways for both groups.”

In “Seeing Is Engaging," she notes: “The unique attributes of vlogs overcome some of the barriers to engagement such as high treatment burden and a lack of the sense of community.”

The Frey Life vlog chronicles Mary and Peter Frey and their experiences in managing her cystic fibrosis. According to YouTube, their vlog has about 190,000 subscribers and draws several thousands viewers daily. | AAPL

Lee suggests physicians spend a few minutes on YouTube finding vloggers with lots of followers who may be dealing with similar situations as their patients.

“It requires a bit of legwork, but not a lot because you only need a few good examples.”

She says, “The strength of the videos is that it’s coming from patients,” adding they are a way to raise awareness outside of the science.

Lee says buy-in on the part of physicians is not easy because of the concern the videos might not contain sound medical advice. Some clinicians may simply distrust social media and question its place in patient care.

However, she suggests it’s worth the limited investment to find some good vlogs because some people learn better by watching something rather than reading about it.

That can increase buy-in for patients into their own care. “I think people realize video is a powerful tool,” Lee says.

She stresses that vlogs should not be a way to diagnose or change treatments, but should only add to a patient’s arsenal of information. They can help a physician understand the patient experience and help the patient understand his or her own experiences, she says.

“This is really for patient engagement, patient support.”

Tiffani Sherman is a freelance writer based in Florida. She originally wrote this story for AAPL in February 2017.