Thursday, July 8, 2010

My Spin on the Roche / Diabetes Social Media Summit- Year 2

It’s my second year attending the Roche Diabetes New Media Summit and yes, I had a great time. But to be honest, I’m still wrapping my head around it. I’m not exactly sure what they want from us, but I do know for a fact that both sides have learned about and from one another.

I, like the rest of the people attending the summit, take our job as Diabetes/DOC Community Leaders pretty seriously. We are there to speak for those who are not and I hope we did you proud.

I marinated on this post for a few days because I didn’t know where to start. This world file has been sitting in my To-Do folder since the weekend. I kept putting it off because so much went on that finding both a start and finishing point of the post was daunting.

Finally, here’s my overview. I’ll be writing about various elements of the conference in more detail in the weeks to come.

I arrived in Orlando on Monday Afternoon after sharing a plane ride and a care ride with Kitty Castilini from Diabetes Living Today and our ride to the hotel was fun.

The first official Diabetes blogger I ran into was Rachel Baumgarter who was waving at me from the check-in line.

Later that evening I had dinner with Rachel, Scott and his partner Joe, and our table for four quickly turned into a table that was more than double that amount because LeeAnn, Chris, Scottie J, Cherise, Kelly Rawlings, Sara, Karmel, and Kitty joined us.

After dinner I went to the front desk looking for hospital directions for LeeAnn (who looked like she might have broken her wrist) and I ran into the family Sparling /Sparkling checking in. OK, I just have to say that BSparl is GORGEOUS!

Later that evening I ran into my very first diabetes CDE/Psychologist Joe. We hadn’t seen one another in 30 years, which just proves how small the diabetes world is. Turns out my 8 year old self was the 2nd patient he ever had. I’ll write about about our meeting in another post. I will say this: He hasn't changed a bit- and he's one of the main reasons I see the Diabetes glass half full.

The next morning the bloggers several of us acted as Ninjabetic's welcoming committee and then headed to an early lunch provided by Roche. We used our time at lunch to catch up with one another in IRL - In Real Life. It’s always amazing to meet your D friends face to face. It’s also fantastic and emotional and I can’t wait to meet the rest of you in real life.

At 1pm we were lead to a ballroom and the Summit started in earnest.

Turns out Roche not only took notes on what we said last year, but also decided to implement our words into their advertising campaign.

Last year there was a HUGE discussion on “the ideal diabetic" and that being an ideal diabetic had nothing to do with the numbers on the meter box.

Roche ran with that discussion and it became a major point in their 2010 advertising campaign. Roche showed actual pwds in their commercial with real numbers (like 274) on the TV screen. THAT"S HUGE.

Roche also talked about a project called the Diabetes Care Project. They've partnered with The National Minority Quality Forum, Allience for for Aging research, and the The AADE.

The DCP's focus is to help people with diabetes better manage their disease, prevent complications and live a great life.

I think it’s a great step and I know it will help many pwds.

Personally, I'd like the The Diabetes Care Project work with both CDES and Diabetes Patient Advocates in the future. As a Diabetes Patient Advocate, sitting in a room of Diabetes Patient Advocates, who were there representing legions of Diabetes Patient Advocates, I feel that the Diabetes Patient Advocate Perspective would be a welcome element to the program.

I brought that up at the summit and was told that Roche was seriously considering bringing our element to the table and I hope they do.

Roche then had us participate in an several exercises on meter accuracy ratios and blood sugar facts. Basically they wanted to know what percentage pwds were willing to be off either on the high or low end.

All of us agreed that we didn’t want to be off on either end.

In a perfect diabetes world, there would be no meter inaccuracies, hell; there would be no diabetes. But that’s not the world we live in.

And lets not forget that both highs and lows throw us for a loop. Both can leave us unconscious, and both make us feel like crap. Long-term highs lead to long-term diabetes damage. Long term lows can leave us not only shaken (both literally and figuratively) but can cause seizures or worse.

I strongly believe that if a GPS application on my ipnone can get me from point A to point B, a blood sugar meter can have a lower than 20% margin of error.

Like many, I remember the diabetes dark ages, back when we used fuzzy blue pills to test our urine and meters weighted more than my external hard drive. Times and technology are moving at lightening speed today and diabetes is a technology based disease. Our technology must be as accurate as possible - I’ve said it before and I’ll say it again, meters are our GPS systems, they must be more accurate.

Roche invited several guests in attendance at our Summit, that included, corporate and PR Reps from the American Diabetes Association and the American Association of Diabetes Educators/AADE.

First up was the ADA, and to their credit, they listen to what we had to say and our discussion was passionate and heated at times.

Many of us who have lived the diabetes life since we were children have “issues” with the ADA. We feel abandoned by the organization that is supposed to represent all diabetics, not just those with type 2. Many feel it’s become a Dr’s organization and have felt that the patient factor is being ignored. Scott Strumello eloquently (and factually) expressed this concerns when he moderated our discussion with the ADA.

I do believe that the ADA realized that mistakes were made in and by their organization in the past. They sat there and listened. They also took lots of notes and answered our questions. David M. Kendell, Chief Scientific& Medical Officer actually introduced himself my stating his name, his title, immediately followed by an emphatic “I’M SORRY.” Every single rep from the ADA listened to what we had to say, knew that a lot of damage in the form of hurt feelings and abandonment issues had occurred, and they were more than receptive to everything we had to say.

In the past, I’ve had my own issues with the ADA, but our conversation with them gave me hope. Now, let's see if my hope in them does indeed float.

Next we spoke to reps from AADE. Our concern as a group representing a larger group that wasn’t in attendance were many focused on the following:

  1. We need more CDEs and Endo's
  2. We feel that the requirement to become a CDE needs to change because many of us (Cherise, myself and others) have considered actually becoming CDEs, only to find out that not only would we need 1000 hours of field work, but a previous medical degree like being a nurse, nurse practioner, or a nutrionest
  3. Going back to school is tough enough, but going back for multiple degrees in order to get CDE certification is long, expensive, and many give up before they even start.

Bottom line, diabetes is now an epidemic- and that didn't happen over night. And unfortunately, the epidemic isn't slowing down- just the oppisite. We need more soldiers in the fight for diabetes; including more endo's and CDES.

We’d like to CDE requirements lesson so more people have the gift of working with a CDE. We’d also like to work with them in their quest to educate every PWD on the planet.

The AADE reps were corporate and they weren't the folks who could change those requirements- but at least we were able to tell them how we felt!

At 6 p.m, we took a group photo and had dinner. The rest of the evening was spent talking, listening and catching up.

The conference was great, and the fact that it coincided with the first day of Children With Diabetes Friends For Life Conference, and that was wonderful timing! It allowed us to have the opportunity to spend some time in "Diabetes Land" and meet more families who live with type 1 diabetes. FYI: There will be a Diabetesalicious post about CWD/FFL in the very near future~

I give Roche credit for flying us all out and listening to all of our diabetes voices. And not just the voices that were in the room, but to all of you who told us your concerns so we could tell them.

More on The Roche/Dblogger Summit to follow in the upcoming weeks.

Now, I'll leave you with a teaser for my next post? Why is Orlando International the loneliest place on the planet earth?


Nan said...

awesome run-down, k2!'s great knowing that our D friends are really out there making a difference!!

George said...

I agree with all u said. I love that it feels like we are making a difference. That is awesome.

Renata said...

Thanks for the seems that all of you feel like the Summit was very informative and productive.

Katie from SF said...

Very cool. I agree on the CDE requirements thing - I had the exact same experience. Is the Joe you saw Joe Solowiejczyk? He is the best.

Windy said...

Great post Kelly!

Scott S said...

I'm still trying to digest everything and put it into a reasonably coherent post, plus I've been so busy unpacking my new office that time has really not been on my side. But I agree with many of your key points, and hopefully I can add something to the conversation when I finally post something on the subject!

Molly said...

Thanks for the summary. And thanks for going to represent us.
David Kendall used to be my endo. I really liked working with him. Weird that he is working at the ADA... :-)

Penny said...

Great summary Kel - thanks. A few thoughts/comments:

CDEs - Yes, yes and yes. Why are the requirements so tough? I don't understand about the darn near medical degree that is needed. I would love to see more people like you and other PWDs out there in the role of CDEs. Glad this topic is bring brought up.

Real PWDs in commercials and ads for diabetic products? Imagine that. I think it's real progress and I am proud of those at Roche last year who spoke up for all of us who are tired of seeing a 104 on a danged meter!

Meter accuracy - Well, people may call me crazy (more than one person has :0) but I don't believe that we have to create these false notions that we can only have so much accuracy - that they cannot achieve accuracy greater than 20%. I wholeheartedly agree with your GPS analogy. Men on the moon and the best we can do it hope for some convoluted 'which do you want, low or high end' theory. Just my two cents.

Thanks for going, thanks for representing. I am thrilled that Roche does this.

Rachel said...

wow - that's quite the rundown :)

Anonymous said...

Thanks for the recap, Kelly. I'm still processing most of it myself, but am encouraged by the willingness to listen and at least the voice support the ADA offered. We'll see what comes out of it, but you're right: the larger Diabetes Community had their voice heard and that can only be a positive that Roche helped put into place. Great meeting you in personally, finally!

Pam said...

Thanks for going and being our voice. I have a great CDE, but I've heard stories of awful experiences. It's not just a medical degree that makes a good CDE. I think personal experience and knowledge count for a ton. And I know my CDE confirs with our endo before we make any changes to Grace's calculations. So I'm all on board with easing the requirements.

Daniel said...

I'm down with meeting people in person, and it's nice to hear someone loudly proclaim that, Thanks. It's so nice to see/meet your colleagues and cohorts that are so passionate about the same things as you.

Unknown said...

Great round up K2, and it sure was awesome to see you again. I sure hope that we can figure out ways to really make these meetings something special.

Unknown said...

Wow! So wish I could have been there- thanks for the recap. I have mixed emotions on the CDE requirements change- on one hand I believe it's important that the people that guide pwd's thru some of the most serious medical terrain are well trained, experienced and educated- HOWEVER I also was dashed to find out that my desire to become a CDE would require training and education that would take years and thousands of $$. Not to mention that many insurance companies will only cover ONE CDE visit a year despite the documented studies that show more visits with a CDE=better control. I advocate for a NEW designation for Diabetes educators- ideas anyone?