It's difficult to describe the feeling of being physically in the same room with 30 people with whom you have a longstanding online intimacy, seeing their faces and hearing their voices in the flesh.

With the likes of David Mendosa, Jeff Hitchcock, Manny Hernandez, Scott King, Kerri Sparling, Fran Carpentier, Scott Johnson, Kelly Kunik and a whole mess of other bloggers and heads of online D-communities gathered, it felt something like a meeting of the mafia bosses — in a good way. Meaning all these "influencers" were at last sitting under one roof, heatedly debating the future of our respective/collective turf.

And here we all are:

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As I have shared leading up to this event, Roche had reached out to me to help organize this first-of-its-kind event bringing patient advocates together from the Diabetes Online Community (DOC).

We bloggers and social network afficionados have been calling for the medical establishment to wake up and smell the Java, and recognize that we patients have a new place to congregate and a new communal voice on the web.  Why don't they recognize us and engage with us, we ask?

Well, Roche was that first big Pharma company to do this. Being a manufacturer of popular glucose meters and pumps, the company is listening to us. Not only listening, but they'd like to start building a closer relationship with our online community. As a first step,, the company's hosted this one-day Social Media Summit for a brainstorming session at their HQ in Indianapolis, IN. Going in, some of the objectives of the day were planned to be:

  • Help bloggers/online advocates craft a manifesto for working together in the interest of the patient community at large.
  • Facilitate an open discussion about Pharma's engagement in diabetes social media; what are the Do's and Dont's?

And yes, we'll talk about inherent conflicts related to all of this.

For many of us, we've been hoping that this sets the tone for the future!

Recapping Roche's D-Blogger Summit

I'm on my way to Europe for our annual family vacation, so I'm going to keep this summary brief.  (I'm sure all the other bloggers in attendance will have plenty to say on all of their sites.)  From my perspective, here are the big takeaways:

* We discussed options for reaching out to the larger patient population that's not yet plugged in to our world of online resources:

  • Regional outreach through Lions and Rotary Clubs, nursing homes, and community centers (possibly a Speakers' Bureau?)
  • Creating a centralized web directory of all imaginable diabetes resources, so that patients and doctors would only have to remember a single URL to find all the good stuff (Gina Capone of the OC blog is working on something along these lines already!)
  • Patient PR/changing the message; we prominent patients need to connect more closely with mainstream media to get the word out, and help change the image of diabetes from doom and gloom to something more positive (an illness with which a great life is possible)

* We discussed general guidelines for pharma companies in Social Media:

  • DO be real, show your humanity.
  • DON'T ever, ever use spam or hidden agendas; be self-serving and/or dishonest; harbor preconceptions about customers/patients; display glossy, unrealistic ads; do all the talking and no listening.

* We crafted a more specific mandate for Pharma Social Media:

  • Establish Trust
  • Actively advocate for the patient community (with legislators, insurers)
  • Add value to the community by helping with costs, etc.
  • Engage Online
  • Watch your messaging: don't sell, educate
  • Start small, and whatever you do, do it well
  • Focus on real people, real stories
  • Acknowledge the guilt of diabetes (less-than-perfect numbers are normal!)

Some food for thought for Roche and all of its contemporaries, we hope. Meanwhile, this outspoken group really gave the Roche folks a run for their money (he, he) over the high cost of glucose test strips.  Scott King even suggested an incentive plan for patients, whereby they'd get discounts or assistance with healthcare costs when they purchase supplies. I'd love to see something like that in place. Could it ever happen?

Ironically (yes, and also intentionally), we ended our day with a tour of Roche's test strip manufacturing plant. What a convoluted and expensive-looking process that is!

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But looking at the sheer volume of test strip vials being churned out here — about 220,000 a day if I got them right — was actually comforting.  How can you ever feel alone with your diabetes again, knowing that so many other people rely on these strips, too?

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We, the OC, had a fabulous meet-up. We were duly and thoroughly inspired by each other.  What remains to be seen is what kind of inspiration Roche really takes away from our outspoken input.

The ball is in your court now, Pharma.