Myelom-Gruppe Rhein-Main

اخر تجديد 12 January 2013

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Setting up a Discussion Forum

Online discussion forums provide an opportunity for patients, relatives and interested parties to exchange information, share views and experiences and ask or answer questions on every aspect of their disease, or simply to follow the discussion. To our knowledge, there is currently no discussion forum dedicated to multiple myeloma for English-speaking audiences available in Europe. However, there are several multiple myeloma-related discussion forums hosted in the United States, including the International Myeloma Foundation's Multiple Myeloma LISTSERV (an open forum hosted by the Association of Online Cancer Resources), the American Cancer Society Cancer Survivors Network Multiple Myeloma Message Board, The Doctor's Lounge Multiple Myeloma Message Forum and a number of Yahoo! Multiple Myeloma Discussion Groups.

We would like to stress that these discussion forums do not replace the advice or treatment from medical professionals. You will find further information on this in the disclaimer and in the website policy. If you are aware of any English-language discussion forum on multiple myeloma in Europe, please contact us. Should you consider setting up a multiple myeloma discussion forum on your website, please consult your website administrator or a computer specialist for technical details. You may also wish to take a look at the following information and tips.

What is an online discussion forum?

An online discussion forum is an interactive tool for online communication that allows participants to post messages on a variety of different topics which others can read and respond to at any time. The two most widely used types of discussion forums on the Internet are mailing lists and newsgroups. Mailing lists distribute the messages for the list to all members of the list by e-mail (some of them are managed with the use of LISTSERV software), while in newsgroups the messages are hierarchically arranged by subject and stored on central servers, where they can be accessed.

The latter are often also referred to as "threaded" discussion forums. This means that the messages posted are organised by means of specific software in a way that allows people to easily understand the order ("thread") of the discussion and get an idea about the content by reading through the "subject lines". This way, users can easily choose the discussion topic where they would like to make a comment or - in case their topic of interest does not yet exist - create a new topic and pose a question.

Discussion forums often help to create a sense of community, especially in the field of rare diseases such as multiple myeloma, and can sometimes become virtual support groups. If a discussion forum is "moderated", this means that one or more qualified experts are in charge of stimulating and facilitating the discussion, deleting inappropriate comments, etc. In forums that are not moderated it is up to the users to organise the flow of the discussion. Some discussion forums require registration, others don't. Many forums allow for users to post new topics and edit or delete their posts while in other forums this may be impossible. Forums can be easily implemented but require good administration and a steady level of participation to be successful.

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Useful tips

  • The purpose of the discussion forum, potential registration requirements and the rules and guidelines for participation should be explained at the outset.
  • It is important to state whether a discussion forum is moderated or not and where to look for help in case of technical problems.
  • Health-related forums should always include a message stating that they are not intended to replace the advice or treatment from health care professionals.
  • The things that users can do or cannot do in the forum (create new topics, edit or delete messages after posting, add links and attachments, use quotes, send private e-mails, search functions, archives, etc.) should be clearly explained by providing examples.
  • Timely feedback on questions should be encouraged to ensure the continuous motivation of the participants.
  • The navigation of the forum should be kept as easy as possible. It is helpful to use an appealing design and convenient format, distinctive titles, a consistent way of structuring and organising forum threads (by date, author or topic), different colours, icons, etc.
  • It may also be helpful to include one general "forum topic" which outlines the aims of the forum or a summary of the subject to stimulate discussion.
  • In the case of a moderated discussion forum which is in its early stages, it can be helpful if the moderator/s pose a couple of relevant and open-ended questions to encourage discussion.
  • Inviting "guest speakers" to join the discussion may also help to stimulate participation.
  • To make sure that a moderated discussion forum is always perceived as a place where people are helpful and friendly to each other, it is important for the moderator/s to intervene without hesitation in case of inappropriate comments or hostile remarks.
  • Useful tips and resources for moderators and facilitators of online discussion forums as well as further information on discussion forums such as guidelines, sample editorial policies, etc. and can be found here.

 

آمال محمد/ منسقة زراعة النخاع
مستشفى الملك فيصل التخصصي- الرياض
المملكة العربية السعودية