Social media sites growing in popularity for LVAD patients and caregivers

Since former Vice President Dick Cheney had a left ventricular assist device (LVAD) implanted in 2012, general interest in the devices has increased and social media sites have included more information on them.

Recently, researchers from the Baylor College of Medicine in Houston analyzed social media sites and found patients and their caregivers use them to gather information on LVADs as well as for social and psychological support following implant. They published the results of their mixed methods study online in Circulation: Cardiovascular Quality and Outcomes on July 28.

“Many patients experience complications or adverse events and turn to the online community for support,” lead researcher Kristin M. Kostik, MD, wrote in an email to Cardiovascular Business. “This is especially important for patients who have transportation difficulties and can’t always receive this support face-to-face in the hospital setting.”

Kostick and her colleagues used targeted Internet Google searches and compiled a list of 89 sites between Nov. 1, 2014, and Feb. 28, 2015, that included Facebook pages, Twitter feeds, blogs, YouTube videos, Yahoo Answers and Pinterest pages. They excluded advertisements and sites created or maintained by scientific, medical, professional, for-profit or academic institutions.

They then narrowed the list to 34 English language LVAD-related sites that were created and maintained by nonexperts who had been active on the site in the past year. Of the 34 sites, 14 were on Facebook, 8 were on YouTube, 5 were blogs, 4 were Twitter feeds, 2 were Pinterest pages and 1 was a Yahoo Answers page.

Of the sites, 82 percent were intended as informational sources and 79 percent served as a forum for sharing perspectives and experiences. In addition, patients who have an LVAD were the audience for 94 percent of the sites, while 85 percent of the sites were also intended for their caregivers.

Kostik explained in her email that the researchers based their framework on scope, audience, usability and user motivation as well as aspects of social media specific to clinical populations. They found that the sites varied in terms of the knowledge of LVAD treatments, prognosis and recovery factors. Still, Kostik said she was surprised with and encouraged by the degree of specificity and details that patients shared, especially on Facebook.

“While there are a lot of interesting proposals on the table for mitigating misinformation in social media – not just limited to LVAD-related media – most revolve around some form of site surveillance or oversight,” Kostik wrote. “The ethics of handling misinformation in social media will surely continue to be an important debate as the use of these forums continues to increase.”

Kostik noted there are several ways to deal with potential misinformation, including the use of a site arbiter or content manager and machine learning algorithms. She said another possibility was building a Wikipedia-like crowdsourcing website in which people can modify or correction information.

“However, while information accuracy is a worthy goal, there are also many reasons to advocate open dialogue in social media, since that has always been their original intent,” Kostik wrote. “If people want information that is undoubtedly accurate, monitored and arbitrated, there are plenty of informational sources available from medical and research institutes online. But people are turning to social media for something other than just pure information. This is where the interesting, uncharted research lies.”