Patients use social media to inspire Mayo Clinic heart research

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