The bad and the ugly of patient Internet forums

Written by Silja on 10 February 2009 in epatients - 8 Comments

The last edition of the Carnival of MS bloggers run by Lisa Emrich, MS blogger and extremely sharp analyst of health policy, focused on the fascinating topic of  the dangers patients face in internet forums.

I have to say, I was flustered to learn about the multitude of issues patients looking for online support have to cope with: fake participants, bad advice and emotional abuse, to just name a few.

Of course, as always, everything depends on how well forums or online communities are moderated. And such moderation takes time, skill and resources… Am I making the case for pharma sponsored forums? I have to admit, my verdict is still out on this one. Most of the value of Internet forums comes from the fact that patients feel they receive unbiased information they can trust. This would not be the case with a pharma sponsored community. Also, we have seen that most online communities set up by companies tank.

A lot can be done though, besides full-sponsorship of a forum, to support well-moderated existing communities and to provide them with accurate and relevant information. In this report and webinar, Fard Johnmar, founder of Envision solutions, outlines effective strategies to engage and achieve openess with online communities.

8 Comments on "The bad and the ugly of patient Internet forums"

  1. despised? 30 March 2009 at 6 h 29 min ·

    I have to say that I know “cyber -bullying” first hand. I naively entered in a forum with my frustration with my condition and was attacked because of my point of view. I was called names and told so many hurtful things where I was looking for support, guidance and validation. These things are very dangerous…had I been any more depressed, who knows how far I could have been pushed by them.

  2. Silja 30 March 2009 at 21 h 28 min ·

    Thank you so much for sharing your experience. And as the true market researcher soul I am, I would like to ask you some more questions regarding your experience: Do you think that if the forum had been better moderated this sort of experience could have been avoided? If you would have found a list of trusted, well-moderated forums, would you have chosen another place to look for information? Would you have trusted such a list, if it had been provided by pharma?

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  1. I believe online communities increase adherence to treatment - do you? - whydot pharma

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