Pulse
Rare Encounter
Women who met online have challenged researchers to study their condition.
By Suzy Frisch
In 2003, just two months after the birth of her second son, Katherine Leon experienced crushing chest pain and found herself fighting to breathe. Leon, who was 38 at the time, thought she was having a heart attack. Doctors weren’t so sure, however. After a few days of continuing cardiac symptoms, an angiogram revealed that Leon had spontaneous coronary artery dissection (SCAD), a condition in which a coronary artery develops a tear, causing blood to flow between the artery’s layers, forcing them apart and leading to a blockage that can induce a heart attack. She immediately underwent double bypass surgery. “It’s like being hit by a truck—you’ve been told that you’re healthy, and you have this condition in spite of doing everything right,” says Leon, who is from Alexandria, Virginia. “You think, ‘Why me?’”
Getting diagnosed with SCAD, which primarily affects women (70 percent of cases), especially those who are pregnant or postpartum, and can result in a heart attack, arrhythmias, or sudden cardiac death, raised numerous questions for Leon. She was especially concerned about whether she could pass the condition on to her two children. After two surgeries to address complications involving her sternum, she turned to the Internet to perhaps find answers and locate other SCAD survivors.
Friending GI Patients
Several years before Mayo Clinic became a social media juggernaut, a gastroenterologist at Mayo’s Jacksonville, Florida, facility started a Facebook page for Mayo patients with Barrett’s dysplasia or esophageal cancer. Most had undergone or would soon have endoscopic therapy or esophagectomy, removal of all or part of the esophagus and top of the stomach. The surgery can lead to problems including reflux, difficulty swallowing, nausea, diarrhea, and fatigue after eating, to name a few.
Patients, who could access the page by invitation only, quickly began connecting with one another, sharing tips, providing each other with support, and answering questions that their physicians often could not about what it was like to go through the procedures, according to Herbert Wolfsen, M.D., who created the page in 2008 with the help of his daughter.
He said that in addition to finding answers and support, patients have enlightened physicians about the issues they face and the coping strategies they have adopted. Wolfsen spoke about the Facebook initiative in October at the American College of Gastroenterology’s annual meeting in Washington, D.C.
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By 2009, about 85 other survivors from the United States, Australia, New Zealand, the United Kingdom, and Sweden had congregated on the WomenHeart website. None of them had ever met another person with SCAD. They discovered that their treatments varied widely—some had had bypass surgery, others had stents placed or were taking medication—mainly because no clinical studies on how best to treat the condition had been conducted.
The group puzzled over questions about what causes SCAD, why it primarily affects women, how it can be prevented, and whether it can recur. They also wanted doctors to develop a treatment protocol. As a member of WomenHeart, Leon applied to participate in the annual WomenHeart Science and Leadership Symposium, one of the leaders of which was Mayo Clinic cardiologist Sharonne Hayes, M.D. Leon decided to approach Hayes about researching SCAD.
“I said, ‘I don’t think SCAD is as rare as doctors say, and I think someone needs to research it,’” Leon recalls telling Hayes at their initial meeting. She also told Hayes that she had met a number of other women with SCAD online. “She got this look on her face like ‘Aha!’” Leon recalls.
Intrigued and impressed with the fact that Leon had access to a group of women who wanted to know more about their disorder, Hayes began looking into the condition herself. A literature search turned up only case reports and case series, with the largest one reporting just 40 subjects. Leon had connections with nearly twice as many women, which prompted Hayes to think about doing her own research.
A Source for Subjects
Hayes and a team of Mayo researchers decided to start by assessing the idea of employing social networking to find patients for a study. They used the WomenHeart site to recruit women who had experienced at least one episode of SCAD and then collected and reviewed their medical records. They also had subjects complete a questionnaire. Within one week, they had the number of volunteers who met their criteria. Hayes and her team published their findings in the September 2011 Mayo Clinic Proceedings, calling the social media methodology a novel way for researchers to find subjects in order to investigate rare conditions. For Hayes, the pilot confirmed that it was feasible to study people who aren’t patients at one institution.
A Minnesota Original: CaringBridge
Long before the term social media was coined, Sona Mehring created an online community out of necessity. A dear friend had given birth to a premature baby in 1997, and she wanted to help the couple tell family and friends how mom and infant were doing. Mehring, who was working as a website developer at the time, created a site where she could post updates and allow the couple’s friends and family to send them messages.
The site Mehring created became a source for news about the couple, who were isolated at the hospital during their daughter Brighid’s nine days of life. Just a few weeks after Brighid died, Mehring decided to offer a similar service to others going through health crises, and she launched the CaringBridge website, www.caringbridge.org. She turned CaringBridge into a stand-alone nonprofit in 2002 and today serves as the Eagan-based organization’s CEO.
Since 1997, CaringBridge has had nearly 2 billion unique visitors, and about 295,000 people have told their story or the story of a loved one on the site. Each day, half a million people connect on the site. Users have come from every state and 225 countries.
“The idea of bringing people together when they are going through a significant health journey or important life event has always been at the core of what we do,” Mehring says. “When someone gets diagnosed with a serious condition, their number of contacts drops by 50 percent. People don’t want to bother them or they don’t know what to say. CaringBridge compels people to be engaged; it eliminates the idea that I’m bothering them and it empowers them to understand the journey that their loved one is going through.”—S.F.
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Using social media to help identify potential research subjects is a huge step forward, Hayes notes, as two frequent roadblocks to conducting investigator-initiated research are the cost and the challenge of finding willing participants. If patients come together virtually through social media and volunteer to be subjects, it will make studying rare conditions more feasible, she says. After an article about the SCAD project’s success appeared in the Wall Street Journal this summer, Hayes received more than 200 inquiries from SCAD survivors who want to participate in future studies. Additionally, representatives from two other organizations for people with unusual conditions contacted Hayes to learn how to find researchers willing to study those diseases.
Hayes is now leading two more studies on SCAD. One is evaluating the cases of 200 survivors to uncover commonalities. The other involves building a bio-bank of blood samples from 400 patients and family members in hope of finding a potential genetic cause and encouraging research by other physicians.
“If we’re not all talking to each other and comparing notes, we’re not going to advance the science. I hope through these studies that we better understand the causes and treatments for SCAD,” Hayes says.
Social Media Gurus
Using social media to advance medicine is nothing new for Mayo Clinic. In 2010, it opened its Center for Social Media to forge deeper relationships with patients and educate other health care providers and organizations about the most effective ways to use social media.
Most recently, Mayo created online health communities similar to the one Leon joined for more than 50 conditions. People can join for free and share information, read articles, ask questions, and get advice. Being a Mayo patient isn’t a requirement. Mayo’s goal was to attract 1,000 members to the various communities by the end of 2011. As of October, they had more than 7,500 members, according to Lee Aase, who directs the Center for Social Media.
Aase says the SCAD research project is a great example of how social media can be used in medicine. “Social media is going to affect the way people make medical decisions. It already has,” he says. “When people get sick, they go online and look for advice from others and look for in-depth resources. It’s making patients empowered.”
And in the case of Katherine Leon, it has turned some traditional relationships upside down, enabling patients to partner in research and better participate in their care. Before she approached Hayes about researching SCAD, the disorder wasn’t really on anyone’s radar.
“We’re one of the first groups of patients with a rare disease to come together through social media and go to an institution and say ‘We need research done’ and have the institution comply,” she says. “I couldn’t believe it when Dr. Hayes announced Mayo had approved two studies on SCAD.”