Journal of Vascular and Interventional Radiology
Volume 22, Issue 3, Supplement , Page S110, March 2011
.Abstract No. 257:
The impact of internet-based social networking on the evolution of endovascular treatment for multiple sclerosis (MS) patients with chronic cerebrospinal venous insufficiency (CCSVI)
G. Siskin*, S. Garla, L. Ginsburg, K. Mandato, M. Englander, A. Herr
1) To review the common social networking sites used by MS patients to convey information and discussions about the role of endovascular treatment for CCSVI. These websites, as well as their methodology for participation, will be reviewed. 2) To review the advantages and disadvantages of physician participation on these websites. 3) To review the potential use of these websites in practice development and patient communication.
CCSVI is a recently described venous abnormality that appears to be present in patients with MS and may be a cause for the some of their symptoms. Early data demonstrates symptomatic improvement in patients undergoing endovascular treatment for CCSVI. While most new procedures go through a rigorous process of research and investigation before being applied to the mainstream population, these procedure appear to have been rapidly accepted by the MS patient community and is now being performed by many physicians around the world. This is largely attributed to patient demand fueled by the information conveyed by social networking websites. Since this is where almost all patients are receiving their information about CCSVI and venous angioplasty, it is critical for all health care professionals involved in the care of these patients to be familiar with these social networking sites.
Clinical Findings/Procedure Details
Existing social networking websites (eg, Facebook, Twitter, etc.), as well as sites dedicated to MS and CCSVI (eg, thisisms.com, ccsvialliance.org, etc.) have been instrumental in allowing patients with MS to share information about this procedure. These sites, together with the internet-based access that physicians now have with both existing and potential patients, have ushered in an era of communication that has driven a new procedure into the repertoire of a growing number of interventional radiologists.
Conclusion and/or Teaching Points
Social networking websites on the internet have been critical in rapidly advancing the role of venous angioplasty in the treatment of CCSVI in MS patients. Understanding these websites and the role they are playing in increasing the demand for this service is important for phsyicians providing this service.
So what are the advantages and disadvantages of physician participation here?
I can think of patient education and the joy of getting to know our good doctors as advantages. Disadvantages?