Are online communities for patients beneficial - or a danger?

Amid all the discussions about patient-centered healthcare during Thursday's opening day of the 9th Annual Connected Health Symposium, 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."

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

But Benabio, lamenting the fact that those opposed to online communities are as popular as wrinkles at a Miss America pageant, pointed out that they're not always in the best interest 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 the 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 said.

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."

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.

This year's conference, which concludes Friday, offered discussions on big data analytics, the Veterans Administration's hugely successful telehealth program, the promise of near-field communications, accountable care organizations, a nationwide health information network and patient experience ratings of primary care physicians. There were demonstrations by dozens of up-and-coming mHealth companies, and more esoteric discussions of the role of behavior change, personal communication and habits in healthcare.

 

Comments

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Kathi Browne
Physicians may not have to "police" social channels as much as simply engage more. If patients build trust in a physician or organization, they begin to make those websites, facebook pages, and libraries their first stop for information. I hold a monthly video discussion where successful physicians and hospitals share their experiences and motivation (you can find the recordings on my "wingspouse" YouTube channel). One consistent message my guest share is that the time spent responding to and educating people is well-worth the time and energy.
Jan Oldenburg
I have to agree with Brad. If the conclusion from the first debate really is that: "A well-informed patient is not always a good thing," I am deeply concerned about the message it sends. I was not able to attend the forum either, but the discussion, as reported, seems to be more about the opportunities for misinformation in online forums, rather than that patients who use online forums and are well informed are somehow dangerous or misguided. It seems, from reading the post, that a better headline and conclusion might be: "Online forums need curating to reduce the opportunities for misinformation to spread." It also may be true that we need more studies on the impacts of online forums in order to understand better what the pros and cons are and how best to address the cons. Controlled studies should make it easier to design forums that maximize their benefits and reduce their negatives.
Brad Tritle
Hi Eric, Thank you for your coverage of this event - valuable for those of us unable to make it. Based on your description of the interchange between Drs Watson and Benabrio, it seems the conclusion would be that "More information can also include misinformation," rather than "A well-informed patient is not always a good thing," as IMHO “well-informed” implies the information received is correct. There are those who are indeed wary of patients having too much correct information, but I didn’t see that as the issue discussed based on your coverage – or was it? To state that a well-informed patient is not always a good thing would be a very audacious stance for any physician to take, based on the Chronic Care Model of Improved Outcomes through Productive Interactions between a Prepared, Proactive, Practice Team and an Informed, Activated Patient.

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