Using Health Discussion Boards for Research Data

You are invited to read and post your thoughts on a very important topic. Should researchers be allowed to read, use and quote messages posted on health discussion boards? What are the ethical concerns involved? Should messages be regarded as "public" just because they are posted "on the internet"?

You can read more and join the debate on the LuPUS Message Board:

lupus-support.org/LuPUSMB/i...

You will be invited to Register. Registration is free. Please note that when filling in your date of birth (to ensure you are not a minor), please use this format: nn-nn-nnnn where n=number. Use the "-" and not "/".

Any problems, email me at: roz[at][lupus-support] [dot] [org] [dot] [uk]

Be well!

Ros

4 Replies

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  • I think it's fine for researchers to be able to read what people are saying on health discussion boards as this will give them anecdotal detail of real people to inform their research. However, if they want to use the details of the people posting or quote from their messages, they should have to seek consent from that individual to do so. If this were not the case, then people would lose confidence in posting what often constitutes very private and personal information about their conditions. These boards have become very important points of contact for people with diseases such as lupus and people will often share anxieties and emotions that they don't even wish to communicate to close friends and family.

  • Dear LucyLocket,

    I really appreciate your post. Thank you very much for your thought. You can read more and share your views on the LuPUS Message Board (http://www.lupus-support.org/LuPUSMB) should you wish to so.

    Be well!

    Ros

  • The whole idea of masking our identity by not using our own name proves that people are more content with confiding with others on this site so, think it should stay that way and people will continue to post what is sometimes a very personal issues.

  • Thank you PattiSmith for your comment. If you would like to comment further, please do so by going here: lupus-support.org/LuPUSMB/i...

    Be well!

    Ros

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