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Scientific Versus Experiential Evidence: Discourse Analysis of the Chronic Cerebrospinal Venous Insufficiency Debate in a Multiple Sclerosis Forum.

Koschack J, Weibezahl L, Friede T, Himmel W, Makedonski P, Grabowski J - J. Med. Internet Res. (2015)

Bottom Line: We detected evidence criteria in this lay discourse that are different from those in the expert discourse.But we should be cautious to interpret this dissociation as a sign of an intellectual incapability to understand scientific evidence or a naïve trust in experiential knowledge.Instead, it might be an indication of cognitive dissonance reduction to protect oneself against contradictory information.

View Article: PubMed Central - HTML - PubMed

Affiliation: Department of General Practice, University Medical Center Göttingen, Göttingen, Germany. jkoscha@gwdg.de.

ABSTRACT

Background: The vascular hypothesis of multiple sclerosis (MS), called chronic cerebrospinal venous insufficiency (CCSVI), and its treatment (known as liberation therapy) was immediately rejected by experts but enthusiastically gripped by patients who shared their experiences with other patients worldwide by use of social media, such as patient online forums. Contradictions between scientific information and lay experiences may be a source of distress for MS patients, but we do not know how patients perceive and deal with these contradictions.

Objective: We aimed to understand whether scientific and experiential knowledge were experienced as contradictory in MS patient online forums and, if so, how these contradictions were resolved and how patients tried to reconcile the CCSVI debate with their own illness history and experience.

Methods: By using critical discourse analysis, we studied CCSVI-related posts in the patient online forum of the German MS Society in a chronological order from the first post mentioning CCSVI to the time point when saturation was reached. For that time period, a total of 117 CCSVI-related threads containing 1907 posts were identified. We analyzed the interaction and communication practices of and between individuals, looked for the relation between concrete subtopics to identify more abstract discourse strands, and tried to reveal discourse positions explaining how users took part in the CCSVI discussion.

Results: There was an emotionally charged debate about CCSVI which could be generalized to 2 discourse strands: (1) the "downfall of the professional knowledge providers" and (2) the "rise of the nonprofessional treasure trove of experience." The discourse strands indicated that the discussion moved away from the question whether scientific or experiential knowledge had more evidentiary value. Rather, the question whom to trust (ie, scientists, fellow sufferers, or no one at all) was of fundamental significance. Four discourse positions could be identified by arranging them into the dimensions "trust in evidence-based knowledge," "trust in experience-based knowledge," and "subjectivity" (ie, the emotional character of contributions manifested by the use of popular rhetoric that seemed to mask a deep personal involvement).

Conclusions: By critical discourse analysis of the CCSVI discussion in a patient online forum, we reconstruct a lay discourse about the evidentiary value of knowledge. We detected evidence criteria in this lay discourse that are different from those in the expert discourse. But we should be cautious to interpret this dissociation as a sign of an intellectual incapability to understand scientific evidence or a naïve trust in experiential knowledge. Instead, it might be an indication of cognitive dissonance reduction to protect oneself against contradictory information.

No MeSH data available.


Related in: MedlinePlus

Flowchart of the data extraction and reduction process.
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figure1: Flowchart of the data extraction and reduction process.

Mentions: Initially, all contributions between January 1, 2008 (the starting point of the forum) and August 17, 2012 (the date of the extraction) were extracted. This initial database consisted of 139,912 postings and was reduced first to postings contributing to the CCSVI discussion. The information retrieval algorithm for identifying individual postings is described in detail for the quantitative analysis [14]. A total of 868 CCSVI-related threads containing more than 53,000 postings were identified. The threads varied by numbers of postings; a few contained only one posting and the longest had more than 2000 postings. The first CCSVI-related posting determined the beginning of our data analysis. To define the end of the chronological analysis, we followed the concept of saturation, a guiding principle in qualitative research. Our sample had to be large enough to assure that most or all the perceptions that might be important were uncovered, but at the same time if the sample was too large, the data would become redundant. Thus, we looked for a consolidation on levels such as contributors, statements, and argumentations. Six months after the first CCSVI-related posting, we could not identify further discourse fragments that provided new information or put the data already gathered into perspective. The flowchart in Figure 1 shows the steps of the data extraction and reduction.


Scientific Versus Experiential Evidence: Discourse Analysis of the Chronic Cerebrospinal Venous Insufficiency Debate in a Multiple Sclerosis Forum.

Koschack J, Weibezahl L, Friede T, Himmel W, Makedonski P, Grabowski J - J. Med. Internet Res. (2015)

Flowchart of the data extraction and reduction process.
© Copyright Policy - open-access
Related In: Results  -  Collection

License 1 - License 2
Show All Figures
getmorefigures.php?uid=PMC4526971&req=5

figure1: Flowchart of the data extraction and reduction process.
Mentions: Initially, all contributions between January 1, 2008 (the starting point of the forum) and August 17, 2012 (the date of the extraction) were extracted. This initial database consisted of 139,912 postings and was reduced first to postings contributing to the CCSVI discussion. The information retrieval algorithm for identifying individual postings is described in detail for the quantitative analysis [14]. A total of 868 CCSVI-related threads containing more than 53,000 postings were identified. The threads varied by numbers of postings; a few contained only one posting and the longest had more than 2000 postings. The first CCSVI-related posting determined the beginning of our data analysis. To define the end of the chronological analysis, we followed the concept of saturation, a guiding principle in qualitative research. Our sample had to be large enough to assure that most or all the perceptions that might be important were uncovered, but at the same time if the sample was too large, the data would become redundant. Thus, we looked for a consolidation on levels such as contributors, statements, and argumentations. Six months after the first CCSVI-related posting, we could not identify further discourse fragments that provided new information or put the data already gathered into perspective. The flowchart in Figure 1 shows the steps of the data extraction and reduction.

Bottom Line: We detected evidence criteria in this lay discourse that are different from those in the expert discourse.But we should be cautious to interpret this dissociation as a sign of an intellectual incapability to understand scientific evidence or a naïve trust in experiential knowledge.Instead, it might be an indication of cognitive dissonance reduction to protect oneself against contradictory information.

View Article: PubMed Central - HTML - PubMed

Affiliation: Department of General Practice, University Medical Center Göttingen, Göttingen, Germany. jkoscha@gwdg.de.

ABSTRACT

Background: The vascular hypothesis of multiple sclerosis (MS), called chronic cerebrospinal venous insufficiency (CCSVI), and its treatment (known as liberation therapy) was immediately rejected by experts but enthusiastically gripped by patients who shared their experiences with other patients worldwide by use of social media, such as patient online forums. Contradictions between scientific information and lay experiences may be a source of distress for MS patients, but we do not know how patients perceive and deal with these contradictions.

Objective: We aimed to understand whether scientific and experiential knowledge were experienced as contradictory in MS patient online forums and, if so, how these contradictions were resolved and how patients tried to reconcile the CCSVI debate with their own illness history and experience.

Methods: By using critical discourse analysis, we studied CCSVI-related posts in the patient online forum of the German MS Society in a chronological order from the first post mentioning CCSVI to the time point when saturation was reached. For that time period, a total of 117 CCSVI-related threads containing 1907 posts were identified. We analyzed the interaction and communication practices of and between individuals, looked for the relation between concrete subtopics to identify more abstract discourse strands, and tried to reveal discourse positions explaining how users took part in the CCSVI discussion.

Results: There was an emotionally charged debate about CCSVI which could be generalized to 2 discourse strands: (1) the "downfall of the professional knowledge providers" and (2) the "rise of the nonprofessional treasure trove of experience." The discourse strands indicated that the discussion moved away from the question whether scientific or experiential knowledge had more evidentiary value. Rather, the question whom to trust (ie, scientists, fellow sufferers, or no one at all) was of fundamental significance. Four discourse positions could be identified by arranging them into the dimensions "trust in evidence-based knowledge," "trust in experience-based knowledge," and "subjectivity" (ie, the emotional character of contributions manifested by the use of popular rhetoric that seemed to mask a deep personal involvement).

Conclusions: By critical discourse analysis of the CCSVI discussion in a patient online forum, we reconstruct a lay discourse about the evidentiary value of knowledge. We detected evidence criteria in this lay discourse that are different from those in the expert discourse. But we should be cautious to interpret this dissociation as a sign of an intellectual incapability to understand scientific evidence or a naïve trust in experiential knowledge. Instead, it might be an indication of cognitive dissonance reduction to protect oneself against contradictory information.

No MeSH data available.


Related in: MedlinePlus