Internet-Based Social Networking and Its Role in the Evolution of Chronic Cerebrospinal Venous Insufficiency
https://www.sciencedirect.com/science/a ... 1612000285
ThisIsMs is an unbiased, unaffiliated Web site that aims to keep users up-to-date on the latest MS-related research and treatments, with forums available for discussion on topics regarding all aspects of MS. CCSVI is one of the popular topics discussed on this Web site. Both patients and physicians find this Web site to be an interesting source of information about CCSVI. Many patients who have been treated previously are using this site to discuss their individual experiences and to subsequently offer advice and encouragement to patients who are going through or have been through treatment.
This particular Web site and, in particular, its group specifically concerning CCSVI has evolved into a forum for physicians to communicate directly with patients, although this has been discouraged.21 Physicians are using this Web site to answer questions in a public forum so that other patients who presumably have the same questions can benefit as well. Several physicians have gained significant recognition because of their active participation as an expert on this site. It is important for physicians using this site for this purpose to be cautious about the advice that they give directly to patients in this type of public forum, which some are seeing as a precursor for formal Internet-based consultations.22 In addition, it is important for patients to be cautious about the information they are receiving because it is not monitored or peer-reviewed. This differs significantly from journal articles and textbooks because there is no expectation that the information being shared is being appropriately referenced or substantiated. Therefore, patients may have a difficult time distinguishing between the opinions of a physician, the anecdotal experience of a patient, and facts based on previously reviewed information. Despite this Web site’s disclosure on its home page that “this site does not offer medical advice” and that “all treatment decisions should be made with the full consent of a physician,” patients continue to take what they read on this site at face value and base many of their own medical decisions on the information they receive from this site.
Internet-based social networking, coupled with increasing online health information-seeking behavior of many patients, presents an opportunity to extend the physician–patient relationship beyond the office or hospital.2,7,9,10 As a result, an increasing number of physicians are tempted to maintain a professional online presence.1 Physicians are interacting with patients both directly and indirectly. As described earlier, the CCSVI forum on http://www.ThisIsMS.com
offers a venue for such interactions, and interventionalists regularly engage in a question–answer forum on this Web site. In addition, other physicians are active under pseudonyms or post messages or statements via a third party member of the forum. The challenge, however, is for any physician to understand how best to interact with patients in a “social” context, while still maintaining professional standards inherent to the physician–patient relationship.