J Med Internet Res. 2014 Jan 14;16(1):e10. doi: 10.2196/jmir.2875.
Sources of information and behavioral patterns in online health forums: qualitative study.
Sudau F, Friede T, Grabowski J, Koschack J, Makedonski P, Himmel W.
Increasing numbers of patients are raising their voice in online forums. This shift is welcome as an act of patient autonomy, reflected in the term "expert patient". At the same time, there is considerable concern that patients can be easily misguided by pseudoscientific research and debate. Little is known about the sources of information used in health-related online forums, how users apply this information, and how they behave in such forums.
The intent of the study was to identify (1) the sources of information used in online health-related forums, and (2) the roles and behavior of active forum visitors in introducing and disseminating this information.
This observational study used the largest German multiple sclerosis (MS) online forum as a database, analyzing the user debate about the recently proposed and controversial Chronic Cerebrospinal Venous Insufficiency (CCSVI) hypothesis. After extracting all posts and then filtering relevant CCSVI posts between 01 January 2008 and 17 August 2012, we first identified hyperlinks to scientific publications and other information sources used or referenced in the posts. Employing k-means clustering, we then analyzed the users' preference for sources of information and their general posting habits.
Of 139,912 posts from 11,997 threads, 8628 posts discussed or at least mentioned CCSVI. We detected hyperlinks pointing to CCSVI-related scientific publications in 31 posts. In contrast, 2829 different URLs were posted to the forum, most frequently referring to social media, such as YouTube or Facebook. We identified a total of 6 different roles of hyperlink posters including Social Media Fans, Organization Followers, and Balanced Source Users. Apart from the large and nonspecific residual category of the "average user", several specific behavior patterns were identified, such as the small but relevant groups of CCSVI-Focused Responders or CCSVI Activators.
The bulk of the observed contributions were not based on scientific results, but on various social media sources. These sources seem to contain mostly opinions and personal experience. A small group of people with distinct behavioral patterns played a core role in fuelling the discussion about CCSVI.
It's research on contributions to online forums about CCSVI. Feels like navel gazing to discuss it here.
How would an outside observer categorize you: Social Media Fan, Organization Follower, Balanced Source User, Average User, CCSVI-Focused Responder, or CCSVI Activator?
How often do our posts contain links to scientific publications, and what percentage of posts should contain research publications? A lot of times, once someone posts new research (as I did just now), the following posts would be a discussion of that research and would not also contain the research link. When there's a link to other social media, that other social media might itself have a research hyperlink in it, so that does not preclude the possibility that research is at the basis of it. I feel that we are often research based, and here at TiMS we benefit from knowledge that comes from Dr. Sclafani, which might be experiential instead of research-based, but that's 40 years or so of interventional radiologist procedural experience. There was no category in this article for that, other than opinions and personal experience, which does not quite fit.
A pdf on the subject of CCSVI forum participants by the same author is available here http://www.swe.informatik.uni-goettinge ... ssion-dmsg Warning: it's 96 pages long but it's not in German, so there's that...