You’re in the doctor’s office as she tells you that she’s very sorry, but you have lymphoma. Later, before you walk out of her chilly exam room and into your changed life, when you ask how you can find out more about your disease, she says, “Whatever you do, don’t go looking on the Internet.”

Yet that’s precisely what you will do because guess what: Looking for health information is the third most popular activity online, according to a Pew report released last year.

That “human capacity to be online? That’s the most powerful tool any organization has,” said Dr. Farris Timimi, a cardiologist at the Mayo Clinic and keynote speaker at the annual Social Communications and Healthcare conference organized by the Business Development Institute in New York City last week.

Timimi has made his name in digital circles praising the benefit of social media for healthcare and, more importantly, for science.

The pitch, the swing, the homer

Timimi grounds his opinions with solid examples, leading with Jayson Werth, a right fielder with the Los Angeles Dodgers when he was hit by a pitch in 2005 that injured his left wrist. The injury was initially misdiagnosed, and Werth had an erratic baseball career for a year until he saw a specialist at the Mayo Clinic, where his injury was correctly diagnosed and appropriately treated. 

Staff at the clinic, sensing a media opportunity, posted Werth’s story on their blog and, using just a flip camera, recorded him discussing his experience. They put the videos on YouTube, but the story got little media traction until it was picked up by a local news outlet and Werth became a baseball hero, hitting home runs in the deciding game of the 2009 National League Championship Series. 

A woman who had been similarly suffering debilitating wrist pain read about Werth in USA Today in 2010 and decided to participate in a Twitter chat between the newspaper and the Mayo Clinic, where she was later treated for what turned out to be the same injury as Werth’s.  

Isolated by geography and disease, united online

The second example Timimi raises begins with Katherine Leon, a 32-year-old mother of two who the clinic diagnosed with spontaneous coronary artery dissection or SCAD, a rare disease for which physicians have limited data.

After hearing her diagnosis, the proactive Leon got online and connected with another SCAD patient in a far-flung location. The pair convinced Dr. Sharonne Hayes, a cardiologist at Mayo, to run a pilot study on their disease, and before Hayes could even post a request for volunteers for the study, the two, tapping into their online communities, had signed up 18 names, six more than Hayes needed.

The participants hailed from various locations around the world, and more continued to add their names to a SCAD databank even after the pilot’s end. “We didn’t drive this,” said Timimi last week. “You understand that? Our patients did.”

The changing patient-physician dynamic

Timimi’s examples offer many insights for marketers but, because more of us are patients before we are marketers, it’s important to underscore the fundamental change occurring in the patient-physician relationship, which Timimi acknowledged.

All of my patients have access to the information I do, so do I pass the straight-face test that I’m the only knowledgeable expert in the room? I don’t think it does.

It used to average 17 years between discovery of a medical breakthrough and popular perception and application, Timimi said. In the Werth example, it took just four years.

The power of the Internet is the power of the patient, who can now research treatments, compare physicians, and collaborate with doctors, who may not always—in fact, don’t typically, according to Timimi—have the time or budget to conduct the kind of in-depth research their patients can and will because, frankly, they’re damn motivated. There’s nothing like learning the horizon of your life has been foreshortened to push you into the Internet rabbit hole of research. 

And while physicians may still caution their patients to take what they find on the Internet with a grain of salt, this is increasingly suspect advice, as good sources of information proliferate as widely as the bad.

In the end, discerning which sources are trustworthy and which aren’t comes down to critical faculties independent of the medium—in other words, it’s on you as much as it is on the physician to ensure you’re looking at accurate information. Indeed, it may weigh more heavily on doctors.

Their sacrosanct role weakens each day as participatory medicine, which recognizes patients as empowered collaborators in their own care, as well as consumers with choices, grows in popularity.

The human bandwidth, immense and formidable

Timimi gets it, and this is why, when asked by a conference attendee whether Mayo staff could be on Facebook during work hours, he replied:

I want our human bandwidth to be part of this conversation. Our advantage is our human bandwidth, not our online bandwidth.

How, then, to maximize that bandwidth, according to Timimi? 

  1. If your organization doesn’t already have social media guidelines, develop them and make sure your staff receives training and orientation. Too few healthcare entities have social media policies, says Timimi, making it difficult for staff to adequately identify social media opportunities for their organizations.
  2. Spend time lurking. Many physicians are leery of social media because they fear legal threats; maybe they’ll be sued by a patient who misconstrues a Twitter comment and takes the wrong medication. But, says Timimi to the risk-adverse, it’s the same risk cocktail that’s been served for the last 30 years.

    When physicians are dinged, it’s for the same old reasons —an inappropriate relationship with a patient, say, or they’ve misrepresented who they are as a physician.

    So, for the pioneering doctor who braves the social media ether, it’s useful to first listen in on the communities you want to join. “Just like a good marriage, you’re judged more on how well you listen than on what you say,” said Timimi.

  3. Always surmise that HIPAA, the Health Insurance Portability and Accountability Act, applies. Concern about HIPPA gives many a healthcare practitioner pause when they’re considering joining the social media fray, so just assume it applies and venture forth.
  4. Define your goals. Remember that you represent yourself as well as your organization. It’s not just Team Hospital; it’s also Player Physician.
  5. Mistakes will be made. Continuing the baseball analogy, Timimi reminded the audience that it’s a long season; you don’t call it quits because of a fielding error in one game. On the flip side, “social media doesn’t make people misbehave. It just makes your mistakes very public,” he said.