Mayo Clinic cardiologist Sharonne N. Hayes was at a women’s heart health symposium at the Minnesota-based hospital in 2009 when a former heart-attack victim stopped her to chat.
The patient, Katherine Leon, asked about a rare and potentially fatal condition. “Dr. Hayes,” she said, “what’s Mayo doing to study spontaneous coronary artery dissection?”
“Frankly, not much,” Hayes recalls saying. The affliction, known by the acronym SCAD, was so unusual that even a cardiologist who had done many angiograms would see only a case or two in his or her entire career.
That conversation, however, led to a groundbreaking, patient-initiated research project that harnesses the power of social media to enable Mayo researchers to investigate a rare disease.
Leon and Laura Haywood-Cory, another SCAD patient who was at the symposium, have succeeded in inspiring a study of a condition that few researchers had considered a productive field of inquiry. Meanwhile, Hayes, an expert in women’s cardiac health, was able to recruit a worldwide cohort of participants she otherwise wouldn’t have been able to reach.
More women than men
SCAD affects more women than men. The dissection occurs when two of the three coronary arteries layers separate, enabling blood to seep between them, Mayo reports. This causes chest pain, heart attacks and even death.
The meeting between Hayes and Leon came at a symposium co-sponsored by Mayo and the National Coalition for Women with Heart Disease’s WomenHeart. Female cardiac patients apply to attend the event and are trained to talk about the disease when they get home, be it through CNN interviews or talks at their church.
That year, Leon, Haywood-Cory and another attendee all had the rare condition—a surprising turn of events in a group of only 60 patients.
Neither Leon nor Haywood-Cory were typical candidates for a heart attack. Leon, of Alexandria, Va., was 38 years old and had just had a baby when she began having chest pains in 2003. She visited the emergency department twice before doctors discovered the torn artery through an X-ray angiogram. Medical staff rushed her into surgery.
Afterward, she was worried that it would happen again and troubled that her doctors couldn’t say what had caused it. “The message is, ‘This is a rare condition and you’re lucky to be alive, and you just need to accept it and move on,'” Leon says.
That answer didn’t satisfy her. She searched the Internet for information and eventually found a WomenHeart support community on Inspire.com, an online platform comprising 200,000 registered members. There patients and caregivers exchange clinical information, practical advice and emotional support, says John Novack, Inspire’s director of communications.
An unlikely heart patient
Haywood-Cory was also an unlikely heart patient. She was a 40-year-old science fiction editor who was training for a triathlon in 2009, and she didn’t smoke or have high cholesterol.
“Heart disease was nowhere on my radar,” she says.
But one morning she woke up early with intense pain that radiated from her chest and up and down her arm and into her jaw. At the emergency room, staff treated her as if for a heart attack but kept telling her it probably wasn’t one; she was too young.
But when they admitted her overnight for observation, the staff found elevated cardiac enzymes that are markers of a heart attack. Only after that did they discover the tear in her right coronary artery, Haywood-Cory says.
For weeks, she was so afraid she would die in her sleep, she stayed up as late as possible. One night while online she found the WomenHeart discussion board on Inspire, where she met Leon virtually.
As other women discovered the group, Leon gathered details about their condition, and she began listing questions they wished to explore about it, among them whether it was genetic and whether it related to exercise or even a migraine medication. These would prove to be what Hayes would later call reasonable starting points for a study.
At the point Leon met Hayes, the cardiologist was floored to learn that she had been tracking 86 SCAD patients (she is now in touch with 140 patients). That presented a huge research opportunity, Hayes says; the largest SCAD study thus far had comprised only 40 women.
In a way, it shouldn’t be surprising that victims of rare diseases would be the ones to spark such a study.
“They’re the ones who are out there looking [online],” Hayes says. “If you’re a 70-year-old and a smoker, you don’t need to think or look real hard as to why you have that heart attack.”
Studying 200 patients worldwide
The Mayo doctor initially agreed to do a pilot study of 12 patients. Research is usually done on patients connected to an institution, she says, but these people were scattered all over the world. Hayes knew from experience that it was hard enough to get records for a patient sitting across the table from her, let alone from patients overseas.
But it worked out, and Mayo is launching another study, this one tracking as many as 200 SCAD patients worldwide. Hayes and her team will examine medical records, questionnaires and patient narratives. Mayo will also conduct genetic testing on blood samples from the SCAD patients and their parents. Researchers will seek answers in the genome sequencing about the disease’s causes.
(In a blog entry, Lee Aase, director of Mayo Clinic’s Center for Social Media, wrote, “One of our key team members is Dr. Marysia Tweet, so it’s almost poetic that we’re working with Dr. Tweet to use social media in medical research.”)
The study has caught the attention of others with rare diseases. Patients and doctors have contacted both Hayes and the two patients to ask about using the Web to gather a list of patients. “This could prove to be a way to leverage social media, the Internet, the interconnectedness of patients on a variety of different disease-based and other websites, to have patient-initiated research,” Hayes says.
In a story on the Mayo study, The Wall Street Journal noted that “the SCAD effort is a rare case of patients using a network as a potent tool to lobby for more research, presenting scientists with a ready-made collection of subjects.” In April, the journal Nature Biotechnology published a study initiated by patients with Lou Gehrig’s disease, the paper reported.
The Journal story came about after Mayo communicator Traci Klein set up a meeting with the reporter and Hayes when she was in New York City. He had interviewed the cardiologist in the past, and when he asked for story ideas, she mentioned the study.
“I think the key takeaway in the pitching is to build solid relationships with the reporters,” says Aase, the social media center director.
Social media demands
The study also introduced Hayes to the 24-hour world of social media demands. A study like hers will take years to complete—the blood tests alone won’t happen for two or three years—so there’s no urgency, Hayes says. Normally, Mayo would communicate with participants by letter.
If Hayes’ study coordinator doesn’t answer an email within 24 hours, patients start posting on blogs, saying, “I haven’t heard from Mayo yet. I wonder what’s going on there?”
Hayes, who has been doing the research at night and on weekends, had to ask Leon and Haywood-Cory to help adjust the patients’ expectations. There is also a blog entry and an online form to help direct those interested in participating.
Even if they are in the study for the long haul, the two patients are grateful that the Internet made the research possible. “I could find people,” Leon says. “We could come together. And If I had enough people, I could get a researcher to do something.”