Diabetes dating in Indiana with Roche

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I just returned from Indianapolis late last night. After an almost harrowing touchdown, the end result of a storm that battered New York City all afternoon and evening, I was returning from an unprecedented event:  a major dialogue between giant diabetes manufacturer, Roche, and 29 diabetes bloggers. Roche, the leader in glucose testing through their brand, Accu-chek, and testing strips, invited us to their Corporate Headquarters to see how to better use we bloggers to get vital learning and information to more patients, those who are online and those who aren’t. 

Like a first date, we were all on our best behavior at the evening reception cocktail party and dinner. While we bloggers were impressive in number it seemed there were as many Roche executives present; each side felt confidently relaxed. The next day we were facilitated by Amy Tenderich of DiabetesMine (a few more photos) and Manny Hernandez ofTuDiabetes to explore how to widen our voice and reach. Some interesting ideas emerged:

– A go-to diabetes web site with a source list for all things diabetes, including blogs categorized by search-need ie: racial identity, young women, parents. 

– A national call to action on Diabetes Day, November 14th, like, “Today I will test three times.”

– A collective list of diabetes blogs to be included in the resource packet typically handed to new patients in hospitals and doctor offices

– A diabetes czar in the Whitehouse 

– Training health care providers to work with patients to empower them to take more responsibility as their own care givers

A significant working session profered what pharmas MUST NOT Do when using social media, the 3 s’s: Spam, Selling and Self-promotion and what they MUST DO, the 2 e’s: Earning trust and Educating. 

Other comments to note were of the 27 type 1s in this group, we all felt ads that show meters with perfect people and perfect blood sugar numbers like 101 and 104 sooooo put us off. “Get real” was the day’s battle cry. One blogger offered, “Today I woke up at 301 and felt crummy! But my meter let me correct and get to work on time.”

Mid-afternoon we were treated to a manufacturing tour and got to see just how those little test strips get made and boxed, and once I got over wearing the old ‘Roseanne’ hairnet helmet, I enjoyed it. I was also touched by the people on the manufacturing floor who have what look like grinding automated jobs and yet smiled and waved to us like they were greeting family members.

As our date drew to a close, we’re not exactly sure if Roche will call again. They did get sprayed with some heavy artillary over the high cost of test strips and why profits seem to come at the cost of many uninsured patients’ health. We wanted to know why does it take so long for new products to come to market? And the big question: Why are meters allowed to be up to 20% inaccurate? It didn’t help that Roche’s Senior Marketing Manager was not at liberty to answer these questions due to FDA regulatory policies. 

Overall, I believe the meeting was successful because it began a conversation and helped put a face on big corporate for us and internet voices for them. And I do believe this was an earnest attempt to provide better service to their tapped and untapped customers, and yes, profit from that. But then I don’t see the two as mutually exclusive. And so I commend the Roche executives we met for braving internal hurdles I can only assume were there, and I hope more companies will pick up the gauntlet and see the value of tapping into this, and similar, very smart networks of professional patients on the ground.

Tu Diabetes

Screen Shot 2015-02-08 at 5.00.35 PMI’m really a novice on social networking sites. Yes, I have a Facebook account, but only because everyone seemed to be emailing me telling me to have one. Then once I had one, people I never met started emailing me to be my friend. I don’t know, if you have a million virtual friends, are any of them really friends? 

I created a Squidoo Lens because my husband thought it would be a good place to share my idea that spending more time energizing positive, rather than negative, emotions helps you take more positive actions to manage your diabetes. It took me weeks to approach creating my lens, reading the online handbook, futzing, experimenting, tearing my hair out, avoiding my computer…then weeks to create it. After all that, it’s actually pretty good, but I haven’t a clue if anyone has found my lens. 

If you were here a couple of weeks ago you know I tried twittering, but as my editor just wrote me (as I had to cut 200 words from my latest article for Diabetes Health magazine), Mark Twain said he would have written less words if he had had more time.

Where do so many people get so much time to Facebook, My Space and Tweet? I just don’t know.

That said, since I want to be cool and hip and really understand this era of social networking, I’ve just joined Tu Diabetes. These last couple of days setting up the site, I admit I kind of like this one. It’s not too hard to establish an account and it’s just for people with diabetes. Now when I get a note from “a friend” it comes with the shared bond of diabetes. 

As the founder Manny Hernandez says, he started TuDiabetes so no one with diabetes will feel alone and people without diabetes will learn more about what it’s like to live with diabetes. I can admire and respect that. 

So, if you’re looking to talk with others who have diabetes, maybe TuDiabetes is the place for you. There’s almost 10,000 new friends to be made. You’ll find me there too.