Do online patient communities have a downside?


The concept of connecting the patient to healthcare through new technologies and interactions is at the heart of the Connected Health Symposium, a two-day conference held each year in Boston and sponsored by Partners Healthcare's Center for Connected Health.

[See also: Patients want more engagement with doctors]

Amid discussions about patient-centered healthcare during the opening day of the event on Oct. 25 perhaps the most striking conclusion came out of the first debate of the day: A well-informed patient is not always a good thing.

Going into the session, which placed Andrew Watson, MD, medical director of UPMC's Center for Connected Medicine, and Jeffrey Benabio, MD, physician director of innovation for Kaiser Permanente, on opposite ends of the spectrum, most of the audience agreed with Watson that online patient communities are "a necessity" and that they're here to stay.

Doctors "have an ethical and moral obligation" to accept and work with online communities, Watson said. "It's a normal aspect of how we take care of patients."

[See also: Mobile app delivers adult immunization recommendations]

"The bottom line is no one is going to stop the consumer electronics market," he added. "This is where patients are going, and they're waiting for us."

But Benabio, lamented that online communities do not always serve the best interests of the patient. There are no clinical studies that demonstrate their effectiveness, he said, and they can do "significant harm" – intentionally or unintentionally.

He described going onto the popular Patients Like Me chatroom and reading a post from a woman who said she'd suffered a seizure after having a flu shot. Several people "liked" that post, he said, even though the seizure was quite likely not caused by the flu shot. In fact, he said, fears of common vaccinations stoked by online communities have led to recent outbreaks of whooping cough, measles and mumps.

Benabio said physicians already have too much on their plates to be asked to police Internet chatrooms, but those online forums need to be regulated to help patients get the right information and keep them from drawing the wrong conclusions.

"We are drowning our patients in information, but we are starving them of knowledge," he remarked.

While not entirely disagreeing, Watson argued that physicians need to be more engaged with their patients. He said a better-informed patient will improve the communication between patient and doctor and ultimately lead to better clinical outcomes.

"I don't think it's a matter of protecting (patients), but of enabling them to have a dialogue," he said. "Healthcare right now is scattered and infrequent…and there are a wide variety of questions that patients have – more than we doctors have time to answer, more than we have time to hear."

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