The eurordis charter of good practise for online patient discussions

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The eurordis charter of good practise for online patient discussions

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

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