It’s not just the temperature in Orlando that makes it a hotbed of diabetes activity these two weeks, but the enormity of activities going on. 

The American Diabetes Association’s (ADA) 70th annual scientific conference has just drawn to a close. Roche just held its second social summit and Children With Diabetes (CWD) begins today. 

Amy Tenderich over at DiabetesMine has been following and reporting on some of the ADA highlights, start here with opening day and see the next few posts, as is Kelly Close over at CloseConcerns, look down the left-hand column. 

I attended Roche’s social summit where they invited 37 type 1 and type 2 diabetes bloggers and broadcasters to a day of exchanging ideas about meter accuracy, best practices and an open dialog between us and representatives of  the American Diabetes Association and the American Association of Diabetes Educators. 

These conversations drew fire, well we are a feisty group, about how the patient seems all but lost amid their constituencies, but the ADA was extremely open about the need and desire to turn their battleship org around to be more representative and serving of patients’ needs, including type 1s – and create more transparency. They also obviously took this seriously sending six representatives including David Kendall, their Chief Scientific & Medical Officer. Kendall talked about the ADA’s “Stop Diabetes” campaign which is one of their first steps in being more patient-centric. 

Unfortunately, the conversation with the AADE was less successful. To be fair, many of us felt it was taking place with the wrong organizational person. She seemed unable to put her finger on our concerns – MAINLY the fact that diabetes educators are a dying breed while patients are an epidemic and need them. 

There are only 15,000 educators nationwide, relatively poorly paid and many suffer burn-out and leave the profession. On top of that, it’s hard to become an educator. There’s no direct route, and, a big catch-22. You need to have 1,000 hours working as a diabetes educator with patients before you can sit for an exam to become certified, but how do you get hired as an educator with no experience? After ricocheting these thoughts around we also voiced that we would like to see the organization advocate to improve the track to become an educator. An interesting point was also raised by my fellow bloggers – why not create a track where patient-experts can also be educators in some recognized fashion?  

In the end, we offered our assistance to help both organizations in any way we can. Specifically with the AADE to link their professional members to more social media. While that idea was warmly received and seen as a benefit to CDEs, allowing them to hook their patients up with us, I hope the AADE also realizes that CDEs can benefit tapping into social media to get inside patients’ heads, and hearts, and follow the trends and news we report on.  

I am impressed by Roche. With their genuineness, commitment and desire to have an open forum with we, who have an open channel to you. And, yes, while we can assume all this will benefit Roche’s sales and marketing, I believe they hope just as much that it will benefit us in getting products we need and want. 

At the 2009 social summit Roche put their toe in the water wanting to learn from us how to enter social media as a “good citizen.” This year’s meeting was heavily weighted on what they believed would be of value to us. Either way you slant it, a pharma better understanding the experience of living with diabetes and doing something with that knowledge can only benefit all concerned. 

To this end, Lisa Huse, Roche Director of Strategic Initiatives, opened the meeting with a recap of the four initiatives Roche has enacted based on what they heard from us last year:

1) “Keep it real” – display the real experience of diabetes, the real blood sugar numbers we get and teach patients what to do with them. I think I heard there’s actually a TV commercial where someone shows a 273 mg/dl on their meter, yea! Then again, I could have been dreaming.

2) Address costs of diabetes – through Accu-check there’s now a 15% prescription discount card and Patient Assistance Program.

3) Advocate for the diabetes community – through their Diabetes Care Project. A coalition of like-minded organizations improving care for those living with diabetes.

4) Help the diabetes community amplify its voice – clearly evident with our exchange with the ADA and AADE. 

Lisa also told us that during this past year of following our blogs and having her ear on the ground with us, she’s come to understand diabetes much more than her first 11 years with the company. As the meeting came to a close I wondered why more companies don’t spend more time, money and attention listening to, and getting to know, their end users. It can only be a win-win.

Personally, for us bloggers in our virtual world, it’s wonderful to get together, to shake a hand, play ping-pong (hope the table’s back next year), give and receive a hug and say to each other, as we hope we say to you, you are not alone. 

By the way, if you blow up the photo, and notice I’m wearing a lovely blue boot, it’s the result of a freakish accident. Don’t worry, five or so more weeks in my lovely footwear and all will be well. (Thus the hope the ping-pong table reappears next year.)

In full disclosure all expenses were paid for by Roche for this meeting.