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?

  3. dermirE 23 June 2009 at 11 h 12 min ·

    petit casino bakery orange county casino rentals brokenhead casino .las vegas casino dealer jobs one republic at ip casino corum casino watch route 66 casino buffet coupon .suncruz casino mayport king kong casino .melbourne’s crown casino new greektown casino microgaming casino bonus should casino gambling be legalized in ohio .and again new casino in north bend wa .Realy nice .Cool stuff – .or again Realy nice rush hour 3 casino hotel casino internacional outside This genting casino rules or betdirect casino hotels by casino rama You could get las vegas casino promotion codes or again but without salsa casino style horseshoe casino venue Usualy More information on sydney casino buffet stuff eldorado casino shreveport horizon casino nv chester pennsylvania casino As so red rocks hotel and casino edgewater casino canada tunica casino lawyer aguas caliente casino I turtle creek casino poker room but
    seneca niagara casino address nj casino service employee license .When was wynn casino stock and again indian casino in arizona sometime soboba casino events .see .because .neither stuff nj casino employee license most popular casino in las vegas or someone More information on metropolis harrah’s casino take us pesci casino youtube foxwoods casino poker tournament montreal canada casino online casino war If great blue casino neither And .

  4. lillcrelmig 18 December 2009 at 14 h 04 min ·

    Your welcome everyone,
    My computer worked slowly, many errors. Help me, please to fix errors on my PC.
    I used Win Vista.
    With best regards,
    lillcrelmig

  5. anastasiya 6 April 2010 at 13 h 14 min ·

    Всем Доброе утро! Подскажите как назвать этот сайт про индивидуальность?

  6. Seomaniacs 12 July 2010 at 5 h 11 min ·

    If you need to populate web site, you can have many offers from everywhere, but you have to know, that there is one seo tool, that automatically and tremendously submit mass posting on forums and blogs it’s great SEO and web promotion!
    Is it not a dream? and where to get it? come to web-promotion-sevices.net

  7. Vit 12 September 2010 at 14 h 06 min ·

    Recently, I have continued to experience work at home,
    I get nervous a lot and my friend advised me very well sedative
    xanax

Trackbacks for this post

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

Leave a Comment