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Sources of information and behavioral patterns in online health forums: observational study.

Sudau F, Friede T, Grabowski J, Koschack J, Makedonski P, Himmel W - J. Med. Internet Res. (2014)

Bottom Line: 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.

View Article: PubMed Central - HTML - PubMed

Affiliation: Institute of Computer Science, Georg-August-University Göttingen, Göttingen, Germany. fabian.sudau@cs.uni-goettingen.de.

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.

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Related in: MedlinePlus

A screenshot of a forum post.
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figure1: A screenshot of a forum post.

Mentions: The database for the study comprised contributions posted to the online forum of the Deutsche Multiple Sklerose Gesellschaft (DMSG, German Multiple Sclerosis Society) [25]. On its website, the DMSG presents itself as a non-profit stakeholder of MS patients and their families, founded by clinical and scientific experts in MS in 1952. It is a registered charity with 16 regional branches and over 900 community contact groups. Among other things, the DMSG provides on its website two different kinds of freely accessible forums: one expert forum with time-limited chats between experts and users about different issues (eg, cognitive deficits in MS or pregnancy in MS). The other forum is unstructured, not moderated, and open for anonymous registration. It is targeted at laypeople, mostly people with MS. The forum consists of threads, which in turn contain sequences of posts. These posts can contain hyperlinks and can cite any number of previous posts. A screenshot of such a post is shown in Figure 1.


Sources of information and behavioral patterns in online health forums: observational study.

Sudau F, Friede T, Grabowski J, Koschack J, Makedonski P, Himmel W - J. Med. Internet Res. (2014)

A screenshot of a forum post.
© Copyright Policy - open-access
Related In: Results  -  Collection

License 1 - License 2
Show All Figures
getmorefigures.php?uid=PMC3958625&req=5

figure1: A screenshot of a forum post.
Mentions: The database for the study comprised contributions posted to the online forum of the Deutsche Multiple Sklerose Gesellschaft (DMSG, German Multiple Sclerosis Society) [25]. On its website, the DMSG presents itself as a non-profit stakeholder of MS patients and their families, founded by clinical and scientific experts in MS in 1952. It is a registered charity with 16 regional branches and over 900 community contact groups. Among other things, the DMSG provides on its website two different kinds of freely accessible forums: one expert forum with time-limited chats between experts and users about different issues (eg, cognitive deficits in MS or pregnancy in MS). The other forum is unstructured, not moderated, and open for anonymous registration. It is targeted at laypeople, mostly people with MS. The forum consists of threads, which in turn contain sequences of posts. These posts can contain hyperlinks and can cite any number of previous posts. A screenshot of such a post is shown in Figure 1.

Bottom Line: 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.

View Article: PubMed Central - HTML - PubMed

Affiliation: Institute of Computer Science, Georg-August-University Göttingen, Göttingen, Germany. fabian.sudau@cs.uni-goettingen.de.

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.

Show MeSH
Related in: MedlinePlus