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The eurordis charter of good practise for online patient discussions

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  • 1. The Eurordis Charter of good practice for online patient discussions
  • 2. Eurordis Charter for patients’ discussion lists (1)
    • Eurordis’ project
      • Discussion lists for patients with rare diseases
      • Specific guidelines
    • 2006-2008 : 25 lists (Médicalistes)
      • + A working group
    • Exhaustive search
      • Medical litterature
      • Specialized websites for discussion lists (Acor,…)
  • 3. Eurordis Charter for patients’ discussion lists (2)
    • A detailed draft of a Charter
      • Submitted to the group
      • Discussions on a list
      • A collaborative working tool : a wiki
    • Additional advice
      • Legal experts
      • Specialists in medical ethics
    • Final text reviewed
      • Moderators, health professionals, associations,…
  • 4. Eurordis Charter for patients’ discussion lists (3)
    • June 2007
      • A full version
      • A short version
    • December 2008
      • A scientific article
      • Guidelines for internet mailing lists and electronic forums for patient groups
        • Méadel C, Oziel D. Presse Med. 2008 Dec;37(12):1809-16.
  • 5.
    • Purposes of the Charter
      • Explaining the key points of the functioning of groups
      • A reference document for moderators
      • Protection against legal issues
      • A training tool
    • Recommendations
    • Main subjects
      • Role of the moderators
      • Definition of the content
      • Relationships with healthcare professionals
  • 6. 10 guidelines for the content of the messages
    • Informative content and not a medical opinion
    • No online diagnosis
    • No advice for a treatment, a product
    • Respect other subscriber’s treatments
    • Avoid shocking or getting down patients and families
    • Validated information
    • No form of publicity
    • Respect laws and regulations (defamation, privacy, intellectual property,…)
    • Respect for other subscribers
    • Respect for the discipline
  • 7. Legal obligation
    • The legal system of hosting providers obliges them,
    • from the moment that they are aware of the illicit character of stored information,
    • "to act promptly to withdraw these data or to render access to them impossible"
  • 8. Participation of doctors, other health professionals and scientific researchers
    • Communities open to them ?
    • Reasons to refuse their participation ?
    • Have they to identify themselves ?
    • Invited as experts ?
    • Invited for a limited time ?
    • Questions sent to them by moderators ?
    • Limits of their intervention ?
  • 9. Limits to what can be written
    • Messages unrelated to the central theme of the commununity
    • “ Hi” messages
    • Dangerous, sectarian, quackish information
    • Controversy between experts
    • Shocking messages

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