4 Stories About Social Media's Awesome Power

When a CIO I spoke with recently stated that Twitter scared him, I doubled my efforts to seek out a good story about use of social media by a healthcare provider. Within a couple of weeks, I found four.

Farris Timimi, MD, a cardiologist and the medical director for the Mayo Clinic Center for Social Media, uses social media strategically.  Speaking at the annual meeting of the Association of American Medical Colleges in San Francisco, Timimi made those strategies come alive.

The first story involved Philip R. Fischer, MD, a Mayo physician and expert on Postural Orthostatic Tachycardia Syndrome (POTS). Fischer's administrative partner, Lee Aase, made a 22-minute video of Fischer speaking about POTS.

A news station used 8 seconds of the footage. "If you don't have POTS," Timimi says, eight seconds is all you really need to hear. But if you have this disease, or have someone you love and care about who has it, you're missing out on some deeper conversation that has value."

To reclaim what the TV station hadn't used, Mayo's social media team turned the entire 22 minutes into a podcast. Five years later, that podcast, posted on Mayo's Web site, has been hit 60,000 times. It required no additional effort on Fischer's part, merely 90 minutes of editing work by staff.

To optimize search engine discovery of Fischer's expertise, Mayo created a blog post with a 4-1/2 minute video of Fischer telling the viewer what he tells his patients every day: "Your child has POTS, here's what I can offer you, here's what you can expect." That video has been viewed 44,000 times and helped numerous patients who never visited Mayo Clinic.

Timimi's second story about social media concerned Dick Berger, MD, who helped identify UT ligament split tears, where the ligament tears along the long axis like a stalk of celery. Many who suffer from it are not diagnosed properly at first, but once diagnosed, can be effectively treated.

Berger's most famous patient is Jayson Werth, a major-league baseball player who suffered a broken wrist in 2006. His UT ligament split tear went undetected and although he played again, Werth was thinking of quitting baseball because of the pain.

A friend suggested seeing Berger for a second opinion. After being diagnosed correctly and having the ligament repaired, Werth signed an $850,000 contract with the Philadelphia Phillies.

The Mayo marketing department tried to share the story with local media, but in Timimi's words, "We threw it and no one swung at it." Then, using a consumer-grade video camera, Mayo made a recording of Werth telling his story in his own words and posted it to the Mayo Clinic blog.

A few years later, Werth hit two home runs for the Phillies in the World Series. "We had the video, we had the blog post, and we had the transcript," Timimi says. The Rochester, Minnesota newspaper did a splash story on Werth's recovery, and the local TV station used Mayo's relatively poor-quality video for an on-air broadcast.

"It's not how it's captured," Timimi says. "It's the message that's the issue."

USA Today picked up the story and featured it in its health section, but the next twist was a social media one. "We had USA Today embed a Twitter widget, so for one hour, you could talk to Dick Berger on Twitter about wrist pain, UT split tears, and how they're diagnosed and treated."

Erin Turner, a resident of Washington D.C., had been living with wrist pain for about five years. Her mother spotted the USA Today Twitter chat with Berger and told her daughter to get online and follow it.

"She felt during that conversation on Twitter that she understood enough about Dick Berger, about the disease, about its management, to come and make an appointment to be seen at the Mayo Clinic," Timimi says. A successful treatment followed.

Timimi's third social media story picks up on the e-patient phenomenon. Spontaneous coronary artery dissection (SCAD) is a rare syndrome where people develop a spontaneous tear in the coronary lumen. "The tear propagates, a blood clot forms behind the torn flap, and occludes the artery," he says. "It could lead to debility, heart failure, or death."

Until recently, few studies had been performed on SCAD. Katherine Leon received the diagnosis, and joined an Inspire.com community of over 7,000 female heart patients hosted by "WomenHeart: The National Coalition for Women With Heart Disease." Soon, Leon and another SCAD sufferer, Laura Haywood-Cory, decided it was time to make someone in healthcare study the syndrome. They discovered a women's heart conference in Rochester and went there in person.

To make a long story short, Mayo set up a SCAD clinic and an IRB-approved pilot study involving 12 women. Before Mayo researcher Sharonne Hayes could post a recruitment notice, Leon and Haywood-Cory had already identified 18 candidates.

Within six months, Hayes had full medical records including angiograms and echocardiograms from subjects from around the world. Hayes is now on track to develop the first DNA biobank of 200 SCAD patients worldwide, plus 400 of their relatives.

"None of them came to Rochester for primary care," Timimi says. "Now this occurred because they made it happen, not because we made it happen. We were available, and interested in the opportunity, but they drove this research. We didn't." The program has since been featured in the Wall Street Journal.

The final story notes that social media can continue to pay dividends years later. Timimi shared the story of Haley, a 13-year-old who suffered symptoms of nausea, vomiting, and diarrhea. Haley saw more than 50 physicians, "none of whom were able to yield a diagnosis that made sense to her or her mother," Timimi says.

In desperation, Haley's mother, Christine Lairmore, turned to the Internet, and found a blog post describing a child who looked just like Haley, who at that point was down to 76 pounds. In that blog post was posted Phil Fischer's 4-1/2-minute video about POTS, four years after it was shot. Lairmore found Fischer's information and scheduled an appointment for treatment.

Social media turned out to be a resource that's scalable, requires little labor, and still has value to patients four years after being produced, Timimi says. Mayo filmed Lairmore telling her story, again using a simple Cisco flip camera, and the footage this time ended up being used by ABC News Online.

"I think we have a moral obligation to do this," Timimi says. In an age of too much information, less time for direct patient care and patients spending more time than ever online, providers can use social media to shape the conversation.

So grab a video camera, find some engaged e-patients at your facility, and jump into the Twitterverse and the blogosphere. Even if you're not Mayo Clinic, you never know where it might lead.