Social media may help chronically ill connect to doctors, fellow patients

19 December 2017: Social media groups that bring together patients, family, friends and healthcare providers can improve patients’ outlook and reduce their anxiety and depression, a recent U.S. study suggests.

In a nine-month experiment with liver-transplant patients, researchers found that participants came to rely heavily on a closed Facebook group, both for information about their condition and help in coping.

“Ninety percent of Americans are on the internet and 80 percent are using platforms such as Facebook and Twitter to find healthcare information from a supportive online community,” said Dr. Sean Langenfeld, of the Department of Surgery at the University of Nebraska Medical Center in Omaha, who wasn’t involved in the study.

“It’s a very powerful tool and offers a great way to facilitate communication among those suffering from abdominal pain or migraines to individuals diagnosed with cancer.”

For the current study, Dr. Vikrom Dhar of the University of Cincinnati College of Medicine in Ohio and his colleagues created a closed Facebook group that ultimately had a total of 350 members, about half of whom were liver transplant patients, 36 percent were family and friends and 14 percent were healthcare providers.

Of the 78 healthcare providers who were part of the hospital’s liver transplant team, 49 were active members of the group, including 7 out of the 16 physicians.

The researchers monitored the group’s interactions and surveyed a subset of participants after nine months.

Dhar’s team found that engagement with the group was high, and 83 percent of participants posted or reacted to others’ posts at least once per month. While patients tended to post supportive messages or inspirational content, the healthcare providers mainly posted educational information.

After nine months, 95 percent of the survey participants said that joining the group had a positive impact on their care, and 97 percent said their main motivation for joining was to get support from other patients and to provide it.

Social media also allows for patient-practitioner interaction between visits to the hospital or clinic, the study team notes in the journal Surgery.

This is especially important for those suffering from alcohol-related end-stage liver disease, Dhar said. “Previous reports in literature have suggested that patients who have appropriate social support have lower rates of alcohol relapse following transplantation,” he told Reuters Health in an email. “Thus, by using social media platforms, physicians may offer social support resources to patients who otherwise may suffer from disparities in accessing such care.”

Still, healthcare providers remain hesitant to engage patients through social media, the study team writes.

A 140-character tweet can result in misinterpretation of medical advice. Without a disclaimer, doctors risk being liable, Langenfeld noted. What’s more, the line between personal and professional engagement is, at best, blurred.

“Never assume there is privacy on the internet,” Langenfeld said in a telephone interview. “Statistics are vague, but in recent years over 50 percent of medical boards have inflicted serious punishment as a result of irresponsible online behavior.” This includes irresponsible behavior unrelated to one’s medical specialty.

It makes sense that the number of teaching hospitals offering social media responsibility courses is on the rise, Dhar said.

“Our study shows that in appropriate settings, physicians can utilize social media platforms including Facebook to create content that patients find positively impacts their healthcare.”