Makedonski, Filip Dobrinov

[["dc.bibliographiccitation.artnumber","e159"],["dc.bibliographiccitation.issue","7"],["dc.bibliographiccitation.journal","Journal of medical Internet research"],["dc.bibliographiccitation.lastpage","e1"],["dc.bibliographiccitation.volume","17"],["dc.contributor.author","Koschack, Janka"],["dc.contributor.author","Weibezahl, Lara"],["dc.contributor.author","Friede, Tim"],["dc.contributor.author","Himmel, Wolfgang"],["dc.contributor.author","Makedonski, Filip Dobrinov"],["dc.contributor.author","Grabowski, Jens"],["dc.date.accessioned","2019-07-09T11:42:34Z"],["dc.date.available","2019-07-09T11:42:34Z"],["dc.date.issued","2015"],["dc.description.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."],["dc.identifier.doi","10.2196/jmir.4103"],["dc.identifier.fs","618834"],["dc.identifier.pmid","26133525"],["dc.identifier.purl","https://resolver.sub.uni-goettingen.de/purl?gs-1/13579"],["dc.identifier.uri","https://resolver.sub.uni-goettingen.de/purl?gro-2/58698"],["dc.language.iso","en"],["dc.notes.intern","Merged from goescholar"],["dc.relation.issn","1438-8871"],["dc.relation.orgunit","Institut für Allgemeinmedizin"],["dc.rights","CC BY 2.0"],["dc.rights.uri","https://creativecommons.org/licenses/by/2.0"],["dc.subject.mesh","Chronic Disease"],["dc.subject.mesh","Evidence-Based Medicine"],["dc.subject.mesh","Humans"],["dc.subject.mesh","Internet"],["dc.subject.mesh","Multiple Sclerosis"],["dc.subject.mesh","Patient Satisfaction"],["dc.subject.mesh","Social Media"],["dc.subject.mesh","Spinal Cord"],["dc.subject.mesh","Venous Insufficiency"],["dc.title","Scientific Versus Experiential Evidence: Discourse Analysis of the Chronic Cerebrospinal Venous Insufficiency Debate in a Multiple Sclerosis Forum."],["dc.type","journal_article"],["dc.type.internalPublication","yes"],["dc.type.subtype","original_ja"],["dc.type.version","published_version"],["dspace.entity.type","Publication"]]

[["dc.bibliographiccitation.artnumber","e10"],["dc.bibliographiccitation.issue","1"],["dc.bibliographiccitation.journal","Journal of Medical Internet Research"],["dc.bibliographiccitation.volume","16"],["dc.contributor.author","Sudau, Fabian"],["dc.contributor.author","Friede, Tim"],["dc.contributor.author","Grabowski, Jens"],["dc.contributor.author","Koschack, Janka"],["dc.contributor.author","Makedonski, Filip Dobrinov"],["dc.contributor.author","Himmel, Wolfgang"],["dc.date.accessioned","2018-11-07T09:46:33Z"],["dc.date.available","2018-11-07T09:46:33Z"],["dc.date.issued","2014"],["dc.description.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."],["dc.identifier.doi","10.2196/jmir.2875"],["dc.identifier.isi","000331450500019"],["dc.identifier.pmid","24425598"],["dc.identifier.purl","https://resolver.sub.uni-goettingen.de/purl?gs-1/14475"],["dc.identifier.uri","https://resolver.sub.uni-goettingen.de/purl?gro-2/34899"],["dc.notes.intern","Merged from goescholar"],["dc.notes.status","zu prüfen"],["dc.notes.submitter","Najko"],["dc.relation.issn","1438-8871"],["dc.relation.orgunit","Institut für Allgemeinmedizin"],["dc.rights","CC BY 2.0"],["dc.rights.uri","https://creativecommons.org/licenses/by/2.0"],["dc.title","Sources of Information and Behavioral Patterns in Online Health Forums: Observational Study"],["dc.type","journal_article"],["dc.type.internalPublication","yes"],["dc.type.peerReviewed","yes"],["dc.type.subtype","original_ja"],["dc.type.version","published_version"],["dspace.entity.type","Publication"]]

[["dc.bibliographiccitation.artnumber","e39"],["dc.bibliographiccitation.issue","1"],["dc.bibliographiccitation.journal","Journal of Medical Internet Research"],["dc.bibliographiccitation.volume","16"],["dc.contributor.author","Sudau, Fabian"],["dc.contributor.author","Friede, Tim"],["dc.contributor.author","Grabowski, Jens"],["dc.contributor.author","Koschack, Janka"],["dc.contributor.author","Makedonski, Filip Dobrinov"],["dc.contributor.author","Himmel, Wolfgang"],["dc.date.accessioned","2018-11-07T09:46:34Z"],["dc.date.available","2018-11-07T09:46:34Z"],["dc.date.issued","2014"],["dc.identifier.doi","10.2196/jmir.3280"],["dc.identifier.isi","000331450500022"],["dc.identifier.purl","https://resolver.sub.uni-goettingen.de/purl?gs-1/14476"],["dc.identifier.uri","https://resolver.sub.uni-goettingen.de/purl?gro-2/34900"],["dc.notes.intern","Merged from goescholar"],["dc.notes.status","zu prüfen"],["dc.notes.submitter","Najko"],["dc.relation.issn","1438-8871"],["dc.rights","CC BY 2.0"],["dc.rights.uri","https://creativecommons.org/licenses/by/2.0"],["dc.title","Sources of Information and Behavioral Patterns in Online Health Forums: Observational Study (vol 16, e10, 2014)"],["dc.type","journal_article"],["dc.type.internalPublication","yes"],["dc.type.peerReviewed","yes"],["dc.type.version","published_version"],["dspace.entity.type","Publication"]]