Here's one more way social media is changing our world: Patients are instigating needed research via Internet message boards.
Being diagnosed with a serious medical condition is rough. But the uncertainty and sense of helplessness can be amplified if your condition is rare. Little -- if any -- data is available for making a prognosis. Few -- if any -- studies are being done to learn about the prevention, detection, treatment, follow-up of your condition.
When Patients Band Together is a fascinating piece in the Wall Street Journal that gives hope to the thousands of patients with rare conditions. Journalist Ron Winslow tells the story of a 38-year-old mother, Katherine Leon, who developed spontaneous coronary artery dissection (SCAD), a life-threatening condition that mimics a heart attack. She underwent emergency bypass surgery and survived.
While recovering, Leon turned to message boards to connect with others who went through the same trauma. But she wanted more than just emotional support. She wanted to push for research into the disease. Armed with a folder full of cases, she attended a workshop on heart disease at the Mayo Clinic, met Dr. Hayes, and lobbied for a study. It worked.
August 30th, results from the small pilot study (12 SCAD patients) were published. This shows "it is feasible to collect data and medical records from patients with different doctors and from far-flung locales. A larger study (400 SCAD patients) has been launched.
Dr. Hayes explains that social networking "is a catalyst and it allows us...to gather a critical mass of patients."
What a fascinating study. Social media has just taken off in the last few years. The medical implications are just beginning to appear. Thanks for this post!
Jan
Posted by: Jan Hasak | September 11, 2011 at 01:30 PM