This Is MS Multiple Sclerosis Knowledge & Support Community

http://www.ncbi.nlm.nih.gov/pubmed/24425598

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.



Author information



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.

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...

This research is pathetic. It is a very poor attempt to discredit CCSVI and nothing else. It is so obviously biased from the outcome that no informed impartial reader could take it seriously. Sadly the topic of patient advocacy and online sources of information is an interesting and important one of course and is much wider than CCSVI. It is a topic that really deserves some intelligent scrutiny but it doesn't get it here.

I don't know if I can be bothered to read it all. I would have done if I had thought the authors were at least trying to be impartial. But a couple of obvious observations. The algorithm they used to detect whether a post was relevant to CCSVI was based on 11 terms only: CCSVI, CCVI, Zamboni, Stent, Dilatation and five different versions of 'Chronic cerebrospinal venous insufficiency' with various germanic spellings! No mention of angioplasty, venoplasty, ballooning, narrowing, or the venous system. Nothing about hypoperfusion, extravasation, transit time. I could easily extend the list. I would guess there are numerous threads on TIMS which discuss issues related to CCSVI without using any of the terms they searched for so how can the researchers say they have accurately identified those posts which are about CCSVI in the first place? If they haven't then how can they make statements like "Of 139,912 posts from 11,997 threads, 8628 posts discussed or at least mentioned CCSVI" Is it not obvious that you can mention and discuss CCSVI without necessarilly using any of those terms? If that basic starting point is wrong then everything which is based on it is also wrong. Their approach is simply gormless.

Another laughable statement is the one which follows it: "We detected hyperlinks pointing to CCSVI-related scientific publications in 31 posts." 31 posts out of 8628!!! You can probably find a single post from Joan on TIMS which has 31 links in it alone. If you counted up all Joans posts the links will be in the hundreds. The links may not mention CCSVI they may point to related research about specific vascular or neurological issues but they are mentioned because of their relevance to CCSVI. Of course Joan is not the only one we are blessed with a substantial number of avid and informed posters and lots of research gets discussed which I for one think is a very good thing.

Obviously I cannot speak for the German website but a cursory look at TIMS would have shown Marie's 'CCSVI research here' topic which itself contains about fifty links immediately followed by Joan's Chronic Cerebrospinal Venous Insufficiency (CCSVI) topic. Another thought is 'How do you count a reference to CCSVI Alliance's article database? They do occur on TIMS (but not on the german website?) and they point to about 380 references to articles about CCSVI related topics.

I am afraid I have no patience with these people. The approach they have taken is simply inane. Their claimed results are meaningless. It completely baffles me that anyone would fund it or that any reputable journal would publish it.

I would have thought that 'personal experience' is a pretty compelling influence on people's views in many areas of life, assuming individuals are allowed to make rational decisions. The problem with the medical industry is that inflated egos and self-interest are interpreted as 'science'.

AMcG wrote: Another laughable statement is the one which follows it: "We detected hyperlinks pointing to CCSVI-related scientific publications in 31 posts." 31 posts out of 8628!!! You can probably find a single post from Joan on TIMS which has 31 links in it alone. If you counted up all Joans posts the links will be in the hundreds.

Obviously I cannot speak for the German website but a cursory look at TIMS would have shown Marie's 'CCSVI research here' topic which itself contains about fifty links immediately followed by Joan's Chronic Cerebrospinal Venous Insufficiency (CCSVI) topic. Another thought is 'How do you count a reference to CCSVI Alliance's article database? They do occur on TIMS (but not on the german website?) and they point to about 380 references to articles about CCSVI related topics.

Thanks for the votes of confidence, Ally..you're right, they didn't look at TIMS, or the Facebook page I started in 2009, or the CCSVI Alliance page, or NCS, the Italian CCSVI Society, the Australian CCSVI Society. Because all of these pages cite pub med every single day.

They used the following sources from one day in August of 2013. Five years after the discussion began here.

How do we know this? Because they had to list the sources they used in the reference section.

‎Deutsche Multiple Sklerose Gesellschaft/German Multiple Sclerosis Society. DMSG-Forum URL: http://www.dmsg.de/multiple-sklerose-fo ... ie=msforen [accessed 2013-08-06] [WebCite Cache]
‎Forum home | Multiple Sclerosis Society UK. URL: http://www.mssociety.org.uk/forum [accessed 2013-08-06] [WebCite Cache]
‎The CCSVI Foundation of Canada. URL: http://www.ccsvifoundationcanada.org/ [accessed 2013-08-06] [WebCite Cache]
‎CCSVI Locator - Locate CCSVI Social Network Sites. URL: http://ccsvi-ms.ning.com/ [accessed 2013-08-06] [WebCite Cache]
‎CCVSI - YouTube. URL: http://www.youtube.com/results?search_query=ccsvi [accessed 2013-08-06] [WebCite Cache]

It's almost as though they wanted to find the results they did, isn't it?
cheer/Joan