D-Blogger Summit Debrief

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:

groupphoto1


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!

aviva-test-strips

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?

test-strip-mfg-bin



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.

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13 Responses

  1. Arlene Samowich
    Arlene Samowich July 24, 2009 at 6:41 am | | Reply

    Amy –

    I am “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.” I am a Web developer and former dietitian with a 50-year history of Type 1. I’ll let you know when essential2diabetes.com goes live!

    Best regards,
    Arlene

  2. CALpumper
    CALpumper July 24, 2009 at 6:54 am | | Reply

    Awesome. SO awesome.

    Enjoy your family vacation!!
    So great to finally Meet you!!!

    Much Love, Always!

  3. Tim McClintock
    Tim McClintock July 24, 2009 at 8:39 am | | Reply

    From talking to everyone and from the tweets this morning, it looks like it was a great meet-up! (how could it not be, look at all of the GREAT people involved) I hope someone turned on a video camera. I, for one, would pay big money to see this group all in the same room at the same time! HA HA Will Pharma ever be the same?

    This was SO very much needed, and I am hoping that it is the beginning of a new day, one in which the communication between pwd’s and pharma takes on a completely new direction. Thanks Amy!

  4. » Blog Archive » Roche Summit: The sit down.

    [...] We can thank Amy Tenderich of Diabetesmine because she gathered us all up, and has a really great re-cap of the two days if you are curious about what went on. THANKS AMY! Also a huge D-OC big-ups to Roche for putting up [...]

  5. Scott K. Johnson
    Scott K. Johnson July 24, 2009 at 11:49 pm | | Reply

    Thank you Amy for such a great summary. My head is still spinning from all that I experienced there. I’ll second the opinion that we needed WAY more time, for both business and socializing.

    I’ve not yet been able to read many posts about it yet (or even stuff from a couple weeks ago), but I am really looking forward to what everyone has to say about it.

    I thought that Roche did a really stand-up job of respecting us and not product pushing or trying to manipulate us. It is clear that they are interested in how to get involved in the right way, and wanted to learn about it (social media) and what we value in it. I think that is a win/win for all parties.

  6. Gina
    Gina July 25, 2009 at 1:39 am | | Reply

    Amy,

    Thanks so much for coordinating that whole thing. It was total awesomeness!

    FYI: The Diabetes OC Directory is live @ http://www.thediabetesoc.com if anyone has feedback before I officially send out the press release send me an email.

    gcapone1 (at) optonline (dot) net

  7. Viranth
    Viranth July 25, 2009 at 11:01 am | | Reply

    Not to sound so ungrateful or anything, but that’s like 10 million dollars of strips produced every day.

    I bet their cashflow is good.

  8. Jim Purdy
    Jim Purdy July 26, 2009 at 10:46 am | | Reply

    Interesting group picture. Is there any way you could put names up, so we can see who’s who?

  9. Kerri.
    Kerri. July 27, 2009 at 8:07 am | | Reply

    It was surreal to have the opportunity to meet everyone – thanks for helping to make this happen, Amy! And it was good to see you again, too. :)

  10. k2
    k2 July 27, 2009 at 8:35 am | | Reply

    Amy- thanks for making this event happen! Meeting everyone was amazing and it was wonderful to see you again!!!
    Kelly K

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