RESEARCH TRIANGLE PARK, NC – A new study by RTI International and the FDA found that online health communities like WebMD forums and PatientsLikeMe are not replacing physicians as many had feared.
“Although physicians are often concerned that online health communities breed misinformation or circumvent health care providers, we actually found that individuals use these communities as a starting point for health decisions and clinical discussions rather than a substitute for provider advice,” said Doug Rupert, health communication scientist and the study’s lead author.
The study, published in the Journal of Health Communication, convened in-person and online focus groups with 89 members of online health communities representing 50 different medical conditions and 77 online health communities.
“Most of what we know about online health communities is based on anecdotal reports and small studies with a single population, such as people with the same illness,” Rupert said. “One advantage of this study is that we included a wide range of people representing many different illnesses and communities, which gives the findings more weight.”
The researchers found that patients and caregivers use these communities much the same way they use traditional online health information—to understand new or potential diagnoses, explore treatment options and inform clinical discussions.
For example, one study participant reflecting on her experience said, “I felt like I was educated enough to where I went and had that initial consultation at the doctor, I could ask the appropriate questions and hear what his views were and what he thought.”
They also use these communities to address needs not met by traditional online sources or clinical discussions, such as hearing about others’ experiences undergoing treatment, navigating insurance and performing self-care activities.
The research showed that most people accidentally discovered online communities during internet searchers rather than intentionally seeking it. The study also found that individuals valued the communities primarily as an alternative information source rather than as a source of emotional support.
“Ultimately, we found that although individuals value these communities, they acknowledge that the communities offer only anecdotal evidence, and they seek to verify what they learn with external resources and clinicians,” Rupert said.
The study was funded by the U.S. Food and Drug Administration, Office of Prescription Drug Promotion.