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, 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:

I’m on my way to Europe today 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 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:

First: Establish Trust

- actively advocate for the patient community (with legislators, insurers)

- add value to the community by helping with costs, etc.

And Then, 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!

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?

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.

Friday, July 24th, 2009 | Permalink | Comments (13)