The 'SCAD Ladies' Story, And Its Lessons For The Life Sciences Industry

By Brian Loew, CEO of Inspire

One hundred women self-organized in an online heart disease community to examine their collective discoveries about a rare and sometimes deadly heart disorder--spontaneous cardiac arterial dissection--that they all have.

These women are from the US, Canada, Europe, the Middle East, Australia and New Zealand. Most didn't know each other's real names, and few, even today, have ever met or spoken to one another. They weren't experts in clinical research. But the patient-driven efforts yielded an amazing result, as the Mayo Clinic has launched a new study into SCAD.

The women who banded together to focus attention on SCAD were able to not only because they are united through the online community, and also because they did not seek ermission to do so. Through the WomenHeart Support Community on Inspire, they identified their own symptoms and similarities, and called attention to their discoveries.

Crucially, this is a success story about patients working in partnership with industry, not in defiance of it. Mayo cardiologist Sharonne Hayes, MD, who played a key role in bringing the patient-led online research to the Mayo, described the online community as a "catalyst" that allows researchers to "gather a critical mass of patients to learn more about this disease."