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The Pharma-sponsored Online Communities of 10 Years Ago

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UCB announced this week they have launched their partnership with online community PatientsLikeMe for people living with epilepsy.

Pharmaceutical Executive reported on the launch, stating the partnership is "the first truly open online forum involving a pharmaceutical company ... this is the first time a pharma company is getting involved in a truly open community where patients can say whatever they want. "

First, let me say I appreciate what UCB is doing for the epilepsy community. The partnership sounds like a nice way for them to support and foster online conversation about the condition and treatment options. I also admire UCB’s foray into social media at all, where many of their more risk-averse counterparts have stayed far away.

And, in my opinion, UCB probably did it right. They didn’t set out to create a brand-new place of their own for people to converse about epilepsy. They saw an opportunity with a site that already existed, and one that has a solid reputation as a trusted online forum for patients, with all the cool tools, metrics, bells and whistles already in place.

The industry needs trailblazers to lead the way. We need more (real) firsts that represent open, public dialogue between industry and customers...

And I don’t want to split hairs, nor rain on UCB’s or PatientsLikeMe’s PR parade. But I do feel the need to correct the misinformation that this is the "first truly open online forum involving a pharmaceutical company."

Because it isn’t. There are sites around today that easily fit this description. And going back as far as 9-10 years ago, there were other sites that were closer to being the "first" examples, such as MSWatch and DiabetesWatch. I’d even go so far as to say these sites were better examples, because they were wholly owned and maintained by the pharmaceutical companies, not through a partnership with an existing patient forum.

MSWatch and DiabetesWatch aren’t around today for various reasons (and the reasons do not include FDA warnings). But, as you know, things live on the Web forever. So you can see this article from December 2000 on DiabetesWatch and this one on MSWatch (from 2006) as proof they actually existed.

And, as fellow blogger Jonathan Richman pointed out on Twitter, you can’t forget about PKU.com or any of the other pharma-sponsored communities currently live and featured on his wiki. J&J’s http://www.childrenwithdiabetes.com/ and Novartis’ http://www.cfvoice.com/ are yet more examples that are active today.

But I didn’t write the post to be contrary. The points I wanted to make are this:

  • For good reason, there is tons of talk about pharma and social media today and the opportunities to connect with the consumer. It may surprise some to know the connection between pharma and social media goes back 10 years or more!
  • All of this social media hype can backfire. People get excited and sensational statements are made. Marketers get overzealous and over-sell social media to their managers and regulatory folks. At some point, "social media hype fatigue" will set in, if it hasn’t already. It is our responsibility to control the hype so social media can be looked upon with level heads by all.

Finally, the industry needs trailblazers to lead the way. We need more (real) firsts that represent open, public dialogue between industry and customers. Often pharma co.’s regulatory approaches are set on precedent, so we all need good examples out there to show it can be done, and that pharma won’t be held responsible for what is said in open forums.

I believe 2010 will reveal some more new "firsts" for the industry when it comes to social media. And I, for one, am excited to see them!

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