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.