"Media, politics and science policy: MS and evidence from the CCSVI Trenches".

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  • Author(s): Pullman D;Pullman D; Zarzeczny A; Picard A
  • Source:
    BMC medical ethics [BMC Med Ethics] 2013 Feb 12; Vol. 14, pp. 6. Date of Electronic Publication: 2013 Feb 12.
  • Publication Type:
    Journal Article
  • Language:
    English
  • Additional Information
    • Source:
      Publisher: BioMed Central Country of Publication: England NLM ID: 101088680 Publication Model: Electronic Cited Medium: Internet ISSN: 1472-6939 (Electronic) Linking ISSN: 14726939 NLM ISO Abbreviation: BMC Med Ethics Subsets: MEDLINE
    • Publication Information:
      Original Publication: London : BioMed Central, [2000-
    • Subject Terms:
      Evidence-Based Medicine* ; Health Care Rationing* ; Health Policy* ; Patient Advocacy* ; Policy Making* ; Politics* ; Social Media*; Multiple Sclerosis/*etiology ; Multiple Sclerosis/*therapy ; Venous Insufficiency/*complications; Angioplasty, Balloon/adverse effects ; Brain/blood supply ; Canada ; Clinical Trials as Topic/economics ; Clinical Trials as Topic/ethics ; Decision Making ; Humans ; Research Support as Topic ; Saskatchewan ; Spine/blood supply ; Stents/adverse effects
    • Abstract:
      Background: In 2009, Dr. Paolo Zamboni proposed chronic cerebrospinal venous insufficiency (CCSVI) as a possible cause of multiple sclerosis (MS). Although his theory and the associated treatment ("liberation therapy") received little more than passing interest in the international scientific and medical communities, his ideas became the source of tremendous public and political tension in Canada. The story moved rapidly from mainstream media to social networking sites. CCSVI and liberation therapy swiftly garnered support among patients and triggered remarkable and relentless advocacy efforts. Policy makers have responded in a variety of ways to the public's call for action.
      Discussion: We present three different perspectives on this evolving story, that of a health journalist who played a key role in the media coverage of this issue, that of a health law and policy scholar who has closely observed the unfolding public policy developments across the country, and that of a medical ethicist who sits on an expert panel convened by the MS Society of Canada and the Canadian Institutes of Health Research to assess the evidence as it emerges.
      Summary: This story raises important questions about resource allocation and priority setting in scientific research and science policy. The growing power of social media represents a new level of citizen engagement and advocacy, and emphasizes the importance of open debate about the basis on which such policy choices are made. It also highlights the different ways evidence may be understood, valued and utilized by various stakeholders and further emphasizes calls to improve science communication so as to support balanced and informed decision-making.
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    • Publication Date:
      Date Created: 20130214 Date Completed: 20130506 Latest Revision: 20220318
    • Publication Date:
      20231215
    • Accession Number:
      PMC3575396
    • Accession Number:
      10.1186/1472-6939-14-6
    • Accession Number:
      23402260