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online health consumer survey/research

Posted by OddipusRex on June 25, 2002, at 10:36:50

Hi Dr Bob I thought you might be interested in this. I thought it looked very well done. Perhaps you might like to post a link. Some of the people here might like to participate.

http://www.psra.com/patient.htm

Have you had anymore ideas about your own research? Maybe you could look at the influence of the moderator and moderation style or do a kind of essay subjective thing about the evolution of your standards for posting? Even though you don't participate much in the discussion I think you shape the community as much as moderators that take a much more active role in discussions, etc.

Also maybe you could look in depth at the "very important posters" you spoke about in your first article.

I think it would be interesting for you to look at how you make ethical decisions. For instance is it ok to allow other other posters to reveal personal information including the real name of another poster as happened in the case of sar? There have been cases on other online communities of false suicides being reported. (I am in no way suggesting that happened here.) If a poster stops posting and someone posts that he is dead, in jail, rehab, hospital, etc would that be allowed? If someone posts the real name of another poster in some other circumstance will that be allowed?

Did you take any steps to verify any of the information posted about sar? Are you planning to obtain permission from her next of kin before setting up a memorial for her? Do they own the rights to her words now? Would it cause them pain to be publicly identified as the subject of some things she might have posted here anonymously?

Is sar eliminated from your research now because she has been publicly identified?

I just wondered what your thoughts were about these things. I don't mean to cause any pain for her friends or suggest that anything was done with ill intent. I just think it should be carefully considered.

I return myself to exile.

OddipusRex
Civility c'est moi


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