title: Sources of information and behavioral patterns in online health forums: observational study.
abstract: BACKGROUND
  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.
  
  
  OBJECTIVE
  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.
  
  
  METHODS
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Institute of Computer Science, Georg-August-University Göttingen, Göttingen, Germany. fabian.sudau@cs.uni-goettingen.de.
authors.forename: Fabian
authors.initials: F
authors.lastname: Sudau
authors.forename: Tim
authors.initials: T
authors.lastname: Friede
authors.forename: Jens
authors.initials: J
authors.lastname: Grabowski
authors.forename: Janka
authors.initials: J
authors.lastname: Koschack
authors.forename: Philip
authors.initials: P
authors.lastname: Makedonski
authors.forename: Wolfgang
authors.initials: W
authors.lastname: Himmel
mesh_terms: D001921:Brain / Q000098:blood supply; D002908:Chronic Disease; D015438:Health Behavior; D006801:Humans; D033181:Information Dissemination; D020407:Internet; D009103:Multiple Sclerosis / Q000523:psychology / Q000628:therapy; D009862:Online Systems; D013131:Spine / Q000098:blood supply; D014689:Venous Insufficiency / Q000523:psychology / Q000628:therapy
keywords: CCSVI; Internet utilization; data mining; information dissemination; multiple sclerosis; social media; social networks