Roughly 150 million U.S. citizens with chronic illnesses turn to online support communities for assistance — a number likely to grow as COVID-19 forces high-risk individuals to stay home.
But not all online health forums are created equal, one expert from Mizzou Engineering warns.
“More people are going to be relying on online support groups for information and emotional support, so it’s important to be careful and know some of the warning signs,” said Sean Goggins, an associate professor of computer science.
Goggins studies social computing and has spent years looking at the ways people interact with online health communities.
He co-authored a study about virtual health forums featured on this month’s cover of the Journal of the Association for Information Science and Technology. The study examined user behavior across 49 different platforms.
“We found that users turn to these sites for three primary reasons: Information, emotional support and community support,’ Goggins said.
For those looking for information or medical advice, Goggins suggests keeping an eye out for sites where participants engage in back-and-forth discussions.
“What you want to see is other users asking follow-up questions to get more information about a specific situation,” he said. “That’s a signal a site is trying to provide quality information.”
On the flip side, Goggins said, be wary of sites with ulterior agendas.
“If you see repeated messages or zealous messages, that may not be a reliable source of information,” he said.
Goggins stressed that any advice found online should be verified.
“Don’t rely on one piece of information, and don’t use a site as a replacement for talking with a medical professional,” he said.
For those using online health communities to connect with other sufferers, trust your instincts.
“If your condition requires emotional support and by participating, you feel emotionally supported, it’s a useful site for you,” Goggins said. “If you feel more distraught afterward, maybe that’s not a good use of your time.”
For the study, Goggins and his co-authors looked at how user behavior changes when a site’s interface is altered. They found that changes to a website’s design result in significant drops in user participation especially among the most active members of a group.
The Journal of the Association for Information Science and Technology is a high-profile journal in the information science field. Goggins said he believes the study made the cover in light of the COVID crisis.
“I think they judged it to be important right now as more people seek information from these sources,” Goggins said. “But it also speaks to the breadth of work our faculty do.”