Disease-Specific, Social Network-Initiated Study by Mayo Clinic and Dr. Tweet

Mayo Clinic is the clear leader in social media use by hospitals at this time. Mayo has published 1,500 YouTube videos, has a social media center with approximately 20 employees, and external advisory board with experts that span the globe. They have a social media "residency" program where (for a fee) they are ready to teach you how to blog, Twitter, Facebook and YouTube in 3.5 days. Unhappy with the Facebook use for healthcare, Mayo launched their own social network for patients. But why stop there? Mayo Clinic figured out that you can collect data from the clusters of patients with rare conditions that form spontaneously in social networks. This pilot study is a novel example of “patient-initiated research.” I think this is great and potentially very useful to patients and science. Let's hope more hospitals follow in the footsteps of these pioneers.

The two videos below illustrate the start of Disease-Specific, Social Networking Community-Initiated Study Focused on Spontaneous Coronary Artery Dissection (SCAD):

The chest pain experienced by the woman you're about to meet was much more than a difficult recovery. She had a heart attack when a rare and deadly condition stopped blood flow to her heart. The same thing happened to another woman. After sharing their stories on social networking sites they found more women with the same problem. That's when they contacted Mayo Clinic to convince cardiologists to use the information they gathered on the internet to research this condition.

Dr. Sharonne Hayes, Professor of Medicine in Cardiovascular Diseases at Mayo Clinic in Rochester, MN, discusses her article appearing in the September 2011 issue of Mayo Clinic Proceedings on using social media to research and treat spontaneous coronary artery dissection (SCAD).

After being approached by several members of an international disease-specific support group on a social networking site, the researchers used it to identify patients who had been diagnosed as having at least 1 episode of spontaneous coronary artery dissection and recruited them to participate in a clinical investigation of their condition. Medical records were collected and reviewed, the original diagnosis was independently confirmed by review of imaging studies, and health status (both interval and current) was assessed.

Recruitment of all 12 participants was complete within 1 week of institutional review board approval. All participants completed the study questionnaires and provided the required medical records and coronary angiograms and ancillary imaging data.

This study involving patients with spontaneous coronary artery dissection demonstrates the feasibility of and is a successful model for developing a “virtual” multicenter disease registry through disease-specific social media networks to better characterize an uncommon condition. This study is a prime example of patient-initiated research that could be used by other health care professionals and institutions.

A cute factoid? The lead author of this social network-initiated study is actually called Dr. Tweet (as in a message on Twitter).


Electronic Communication and Medical Research: Beyond the Record

Spontaneous Coronary Artery Dissection: A Disease-Specific, Social Networking Community–Initiated Study

Another related video:

Dr. Sharonne Hayes, director of the Mayo Clinic Women's Heart Clinic, Dr. Marysia Tweet and Lee Aase, director of the Mayo Clinic Center for Social Media, discuss findings of a pilot study of SCAD (spontaneous coronary artery dissection) published in September 2011 in Mayo Clinic Proceedings.

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