The words, “We don’t know” pushed Katherine K. Leon to initiate research at the Mayo Clinic. Why is this unusual? Katherine is not a physician or a researcher. She is a patient. But she believes that “with a rare diagnosis, the patient often knows more than the doctor,” and she’s taken action.
At age 38 after the birth of her second son, something unusual happened to Katherine. This physically fit woman with no risk factors for heart disease had a heart attack.
It was caused by a spontaneous coronary artery dissection SCAD. SCAD is an extremely serious and sometimes fatal condition. This is what happens in a SCAD event.
Coronary arteries, the arteries that feed the heart, have 3 layered walls. With SCAD, the wall develops a tear, causing blood to flow between the layers of the arterial wall. Pieces of the arterial wall can act as a flap, stopping the flow of blood and causing a heart attack or even sudden death. Eighty percent of the people suffering from SCAD are women. SCAD can be fatal but Katherine survived.
Why had this happened to her? No one could answer this question.
She found out that what had happened to her was rare. And when a disorder is rare, there is often little interest in research. It took Katherine over six years of searching to find another survivor of SCADS. She found her online through the Women’s Heart online community which is hosted by Inspire.
Katherine didn’t know she was an innovator when she started looking for fellow SCAD survivors online. She was just grateful not to be alone anymore. And she wanted to figure out what made spontaneous dissections of the blood vessel walls occur.
Year after year she persevered. “My motivation…I wanted to prove SCAD wasn’t rare, that it could recur. I’m worried about my kids and others on the message board. They are loves.”
By the fall of 2009 she had found 86 survivors. “Finding each other around globe [is] one obstacle…it took time.”
She started to keep a database, logging the age of each individual at the time of their SCAD event. Other pieces of data she collected included how the event occurred, whether it happen around pregnancy or was the cause unknown, which artery was involved and what treatment was received. One of the challenges Katherine faced was building trust. Katherine used screen names in her research. “[I] slowly built a “database” with each conversation. Keeping [the] threads going [is the] key to attracting new SCAD survivors to Women’s Heart.”
Each individual in SCAD survivor group had their own ideas and theories about SCAD. “[The] women were great with posting [their] own surveys. We researched ourselves through the online community. Each woman who found the message board added new perspective and enhanced the research goals and agenda over time.”
Patient-initiated research is a new phenomenon and Katherine is the initiator. She pulled trends from her data that she put together for a proposal. Specifically she found events occurred right around onset of menstruation, others were associated with connective disorders, like Ehlers Danlos, later FMD, but the largest group were associated with pregnancy and childbirth. “Our conversations were the raw data.”
Once she had gathered information she started the job of pitching her idea of research. First she had to find the institution and medical researcher. She realized that she couldn’t just say “we want to be researched. You need to be able to answer ‘Why should we research this disorder?”
“Researchers want diagnosed bodies to study. Total package!” The fact that Katherine could point to a group of 60-70 patients gave the research physician a ready-made database. “
Then she researched different research hospitals for research cardiologists that would be interested in a woman’s illness. She found the researcher, Dr. Sharonne Hayes. She’s “Interested, open and compassionate.” And Mayo Clinc, where Dr. Hayes is located, is a large institution already attuned to social media.
The benefits for Mayo and Dr. Hayes are huge. Katherine had provided them with patients who “self identified, who were willing and eager. There was no two-year start up just to get consent. “
She has been a featured speaker at two conferences both at Mayo, the WomenHeart Symposium in 2009 and the Health Communications Summit held at Mayo Clinic Center for Social Media in 2011. These events have “defined my role as patient advocate. Before, I just felt I was doing what needed to be done.”
And she did.