Thanks, Roche - For So Much

This is a longer one, but there's really no way around it. So much to recap, to be thankful for, and to say thank you for. So, that's the focus here... With more recaps and thoughts to come down the road about the second Roche Diabetes Social Media Summit!

Who knew a Person With Diabetes could be so happy with blood sugar readings in the 200s??

Well, I am. As are the other three dozen Diabetes Online Community members who came together in Orlando recently for the second summit that Roche Diagnostics put together. A main reason is that it shows that Pharma is listening to what we patients want and don't want, and making changes based on that. It's an encouraging and positive step foward, one that hopefully others start thinking about.

This was a followup to the first one in Indianapolis last year (which I didn't attend), and a direct result of that conference and feedback from many of the same DOC members who gathered this year. They created a slogan and logo, Passion Power Purpose - something that's somewhat cool but I could debate the merits on. Anyhow, what they've done and are doing with this is something that I'm not going to dismiss because it's clear what the results are after seeing the followup from last year's initial summit.

Here is the slideshow covering the day's activity. Lisa Huse, Director of Strategic Initiatives at Roche Diagnostics' Diabetes Care division, told us that she understands people with diabetes better based on the past 11 months than she's felt in the previous 11 years with the company. A slide said the message from last year was for Roche to keep it real, address D-costs, actively advocate for the patient community, and help the community amplify its voice.

That's happened. She explained that the company's executives are looking to the online community during their decision-making process. They are listening and changing. One part of that is using those "real BG numbers" in their Accu-check ads rather than the typical "perfect 104 mg/dL" that we see in commercials. But they're also helping low-income folk obtain the costly test strips at a discount, and they want to work with other industry players to establish consistent standards.

This is all AWEsome news. And I say thank you for that.

Roche has also launched a major initiative called the Diabetes Care Project, which was founded by Roche and the National Minority Quality Forum and has partnered with the AADE and Healthways and is aimed at establishing personalized health plans to improve the care of people with diabetes. They also created something with Genentech called the Diabetes Patient Member Research Community, which is a private invitation-only group of 300 Type 2s basically representing Roche's customer base to supply feedback about what they like and don't like, or where the company can go. Roche leaders at the summit say this is a starting point and it may lead to similiar involvement with the Type 1 community, and that could be coming down the road. Enough of those attending volunteered our support and participation if that happens! These are huge initiatives that are inspiring to hear about, and it's refreshing to see a company take these steps and welcome the participation and involvement from our community.

Again, these are positive moves and I feel the need to say thank you.

Compared to what I've read online about last year's event and comments from those who attended in 2009, there was much less focus on Roche this year. One big emphasis was on the Accuracy front, and we had a group activity that was both fun and informative, as well as frustrating as it demonstrated some of the hurdles and inadequacies in the whole Blood Test Strip debate. We broke up into small groups and got little Fact and Fiction cards to answer some questions, such as "All meter manufacturers are required to test for at least the 100 most common interferences, such as skin oil and food residues?" That's when we held up our little signs (or as Bennet from YDMV decided - the Gosh Darn or B.S. versions). The activity allowed us to debate accuracy standards and offer thoughts on what we'd be willing to sacrifice on the High or Low end to get there. After realizing that perfect accuracy wasn't doable, everyone found trade-offs and our group ended up deciding the best solution might be 15/10 (within 15 points off on the Low end and 10% on the High side). Other options were 5/30, 10/20, or 15/15 - as this was an over 75 mg/dL scenario and most agreed that the Higher end is what you correct for with insulin, that became a focal point. But there's no right answer and this showed us there's a lot to think about.

After that activity, Roche brought in representatives from the American Diabetes Association and American Association of Diabetes Educators to listen to us about our concerns and how we'd like to see everyone work together toward more. Surrounded by other D-Bloggers and people who are so incredibly passionate about diabetes advocacy, I felt truly at home and among my own people. Even though I missed last year's summit and have never met these online friends in person before. It was an honor, and truly a life-changing experience.

Though I didn't speak up during the presentations or main event, everyone of my concerns and points that had been on my mind to bring was mentioned by others - the whole ADA v. JDRF issue, disappointment with the ADA Expos and fundraising, the CDEs about how receptive they are to social media and patient education, and how impossible it is to get any information about the group. The reps really took the criticism well, from how they don't seem transparent to how many Type 1s feel forgotten by the ADA that has a public perception of being focused on Type 2. They admitted faults and expressed a genuine interest in working together on improving those issues, as well as just working with the patient community more down the road. We were listened to, as Adult Type 1s, and it's clear this is a new starting point that will continue.

The AADE was different, as the organization sent a public relations representative who apparently didn't realize the importance of something: public relations. Her body language radiated defensivness and an unwillingness to listen, and it felt in a way like we were standing in front of a brick wall having a discussion with ourselves. Many expressed frustrations that patient "experts" with an interest in helping educate aren't tapped more, and that our own expertise doesn't seem to be matter unless we go through the specific certification process that is almost like climbing an insurmountable mountain. The AADE made it clear that there's a certification board that is more appropriately the ones to address these concerns to, but these reps didn't seem at all interested in advocating for change or working with us in making this concern know - despite a national shortage of Diabetes Educators (and Endocrinologists). The message: The AADE works for their members only. It seemed as though they didn't seem to get the fact that, if they don't do something, they won't have a membership and will become extinct. Still, as a patient community with diabetes, the next step is getting the message to the National Certification Board for Diabetes Educators - with or without the AADE's advocacy and assistance.

After the afternoon sessions and a great discussion time at dinner, we all broke up for some fun games - traditional ping pong, and Wii bowling and tennis. Chris Bishop and I teamed up and got to the final round, not able to triumph over Dana and Dayle in the end game. But we were semi-finalists, and as a result got $250 split up between us that Roche had announced would be donated to a charity of our choice (winners got $500). Hearing who all the donations were going to, I decided to send my $125 to the JDRF to ensure that everyone was getting a piece and it wasn't all going to one specific place (sorry, Manny!) In the end, Roche has let us know that the donations came out like this: Diabetes Hands Foundation - $875; Diabetic Rockstar - $500; ADA - $500; Diabetes Sisters - $250; and JDRF - $125.
So, thank you on that front, Roche!

Overall, this was an incredibly life-altering event that I'm incredibly thankful to have been a part of. (Photos can be found on the Flickr Group, DBloggerSummit2010.) Obviously, not everyone could be a part of this. But I'm confident the discussion and conversations that happened represent the larger Diabetes Community and that the dialogue in Orlando will continue online and offline and lead to even more discussion and change. It's clear that Roche knows the excitement of bringing so many DOC members together is a driving part of this that trumps most everything else, and I personally think it means a lot to see they want to engage the Diabetes Community in this way.

Yes, Roche paid the tab for travel, lodging, and incidentals. Some may be suspicious about that, but I'm not concerned about it for two reasons: 1. I know my own ethical standards and that I'm not going to get bought off or endorse something based on it - this comes from journalism ethics as well as just overall character. 2.) Roche asked for nothing in return - not a blog, not any kind of endorsement, not good reviews (which I wouldn't be able to give anyway, as I'm not an Accu-check user.) If I didn't like this event, or don't like a product that I use and think it's worth blogging about at all, then I'll certainly put that out there. There's no reason to think that there's anything shady going on, as far as I know based on my experiences.

Based on the willingness to bring some of the Diabetes Online Community members together, engage us in fun and informative discussion, listen to us and make internal policy and product decisions, and to make donations to D-charities, I say thank you to this company. But even more significantly, I say Thank You to every single person who was there and made this what it was in 2009, 2010, and hopefully beyond. It was such an honor to be in the presence of so many passionate people.