Connected Health: The online patient community debate

BOSTON—As patients increasingly turn to the internet for health information, are online patient portals emerging as an effective component of efforts to fight provider shortages and rising healthcare costs? Andrew R. Watson, MD, and Jeffrey Benabio, MD, debated the topic Oct. 25 at the ninth annual Connected Health Symposium, hosted by Partners HealthCare.

“Patients are waiting for us and they’re expecting us to do this,” said Watson, vice president of international & commercial services division and medical director of the Center for Connected Medicine at the University of Pittsburgh Medical Center. “We have an ethical and moral obligation to adopt and embrace online communities.”

“We owe it to society to tell them that this is not an effective way to deliver healthcare, and we need to find better ways,” said Benabio, physician director of innovation at Kaiser Permanente San Diego.

With Watson taking a favorable view, Benabio offered three reasons for his opposition: there is no outcomes-based evidence showing they are effective, they can be harmful and their sources of funding are vague.

“Patients really want to help other patients,” Benabio said, agreeing that online communities might not be malicious, but arguing that the information they promote might not always be correct and could cause harm. “Being well meaning doesn’t mean that it’s effective or that you can’t hurt someone.”

Watson responded that safety concerns are just another reason for providers to step in—to prevent the spread of misinformation. “We have an obligation to protect patients from healthcare in general,” he said, adding that online communities provide a way for providers to increase access. Providers don’t have time to answer all the questions every patient may have and there are some that other patients may answer better. “The communities that patients engage in are largely knowledge transfer. Patients want to be online to talk to one another to be educated.”

“It begs the question of whether the knowledge online is accurate or helpful,” replied Benabio. “We’re drowning our patients in information and starving them for wisdom.” While some forums may be accurate there are tens of thousands online—far too many for qualified providers to police.

While Benabio is wary of online patient communities, an audience member noted that patients aren’t going to just stop using the internet to find health information. He suggested that perhaps the FDA step in to regulate online patient communities and that researchers investigate best practices for sharing health information online.

“Patients are online,” Watson added. “We have ubiquitous communication tools like never before. There’s a risk of going online. It is scattered and unorganized, but that is no different than healthcare today.”