If you imagine the Diabetes Community is climbing a mountain toward some figurative peak, then a takeaway from this year's Roche Social Media might be this:
We've made a pretty inspirational climb during the past few years, but there's still a long way to go. And no matter who's helping with the rope and climbing gear along the way, it's ultimately up to us to climb higher.
That was pretty much the theme of this year's fourth annual Roche Diabetes Social Media Summit, which the 'Mine was proud to be a part of again. Thirty-three online diabetes advocates came together (nine being first-time attendees!) in Indianapolis, where the company's U.S. headquarters is located and where the inaugural summit happened in 2009. This year's annual diabetes educators' conference was about to kick off in Indy, too (more on that tomorrow).
Everyone attending did what we could to represent the broader D-community that could only be there with us in spirit (and via social media, of course!). Even after our initial #dsummit12 hashtag was hijacked by spammers, we grabbed the alternate hashtag #rds12 to keep our fellow D-peeps in the loop.
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The 2012 Summit's official tagline: the Diabetes Online Community - Yesterday, Today & Tomorrow.
Unlike the past two years when Roche invited outside organizations in to establish or strengthen their relationships with us DOCer's, this year's Summit had a more internal focus on how we as a group are working together, whether we're being effective in "making a difference," and how we might move forward. Essentially the event was broken into an "inspirational" tract about connecting with other D-Community members, and a more-official "advocacy" tract discussing our role in embracing new technologies, pushing for device standards and ways we can make an impact in those areas.
First, the inspiration.
We Have Done This!
Roche Diabetes Care's social media guru Rob Muller voiced the climber analogy: "We've seen the mountaintop, and it can seem far away and so very high up. But we've climbed far and sometimes it is good to look back at how far we've come."
Each table broke into small groups and took 10 minutes to reflect on the evolution of the DOC (which we wrote about recently). What came out of this was a summary of our growth:
- Our individual voices have grown stronger collectively and we're reaching more people. Key examples: the Diabetes Social Media Advocacy (#dsma) online chats and blog carnival, and real-life D-Meetups.
- The diverse perspective and collective life experience we now have as an expanded community allows us to focus on specific issues or concerns, to better reach those who need help with particular concerns.
- Aside from connecting fellow PWDs, we've established and strengthened relationships with leading advocacy organizations like the ADA, JDRF, and IDF.
- We're going beyond the Diabetes Community and offline into clinics' offices and reaching beyond our bubble.
Muller emphasized that without these summits, Roche wouldn't have known to change how it interacted not only with patients but also with pharma and other industry leaders. Highlights of what's resulted from this patient-pharma summit interaction:
- Improved Patient Assistance Programs, including the Cash Savings Card (created after first Summit)
- The Diabetes Advocates program (!), a grassroots organization of now 88 members that promotes the DOC's work and has created programs such as a media accuracy campaign to debunk diabetes myths
- The Diabetes Hands Foundation's Big Blue Test, which has been sponsored by Roche as a way to not only help people understand the impact of exercise on their blood sugar numbers and raise D-awareness generally, but also to help provide U.S. and global help for those in need
- The Diabetes Heroes program, which honors folks who have accomplished great advancements and advocacy work, created following the 2011 Summit
- The PODS (Part of DiabetesSisters) program, which takes connecting women with diabetes to meet-ups IRL (in real life)
- Roche's Glooko partnership (the cable product that makes data downloading a no-brainer) thanks to talking with members of the DOC
- More realistic marketing campaigns, such as print ads and TV commercials that display results other than the "perfect 106" number typically shown on product boxes
- More online and offline involvement in World Diabetes Day
"We want to be an arrow pointing to all your excellent resources," Muller said about DOC initiatives and how Roche isn't interested in taking credit for these. Instead, it's about greater understanding, educating and connecting, he said.
The first guest speaker was Josh Bleill of the Indianapolis Colts' front office and a double-amputee who lost both his legs as a Marine in Iraq. His was an incredibly inspirational talk, and actually represented the first time at one of these summits that someone from outside the D-Community came in to tell us about the importance of what we do. Fellow D-blogger Chris Stocker's post captures the essence of what I and many others felt about Josh's story. Josh reminded us why it's so important to reach out to others like us living with compromised health, because we're shaping our own story and telling the world about the realities of diabetes. And also because our words connect people with encouragement when they need it most in their lives.
The second guest speaker was fellow type 1 and DOCer Steve Richert, founder of LivingVertical, aimed at using rock climbing as an inspiration to show people that you don't have to be limited by diabetes. Steve recently teamed up with Accu-Chek and they showed a website and video produced for their joint awareness campaign. Steve shared how he's more concerned about going high than low, because of adrenaline rushes and the fact that giving himself insulin mid-climb could cause him to drop dangerously low. One of the most emotional moments came when D-Mom Wendy Rose voiced her concern about Steve climbing by himself, without a medical ID and sometimes without a rope. Though she's happy that he isn't limited and is able to accomplish these climbs, she's also scared about something happening to him out there all alone. This showcased that our loved ones' worries may never cease, despite the limits we can transcend living with diabetes.
"If you want to do it, this can be done," he said.
D-Technology: Pluses and Minuses
But inspiring each other and touching that emotional side of diabetes isn't the whole story. We also spent a lot of time at the Summit focusing on the business side of diabetes — about Roche's products and technology in general.
We got a "meter memory lane" tour stretching back 40 years since Roche Diabetes Care introduced its first meter, the Stat Tek, in 1974. For those who weren't around: think a clunky iPad-sized device (similar to this), a huge drop of blood and two minutes of waiting and wiping before getting a number (!)
Roche's marketing director Jennifer Aspy offered an interesting tidbit about how the company developed their new lancing device FastClix; they observed how long it took a PWD to actually take out their meter, do the lancing job, and complete a glucose test. Apparently, Roche's popular Multiclix took the most time of any lancing device used in the observation, so now they're putting in the boxes their new FastClix that can be activated with a single plunger push.
A heated discussion surfaced about meter marketing when it comes to the number displayed on boxes and in TV commercials. As noted, product boxes generally show the "perfect" BG results like 106, while some commercials have started using more "real" numbers like 180s and 235 mg/dL. Opinions varied on whether one was more appropriate than another, depending on whether you're aiming to represent "success" or "real life." Some felt strongly that this discussion goes to the heart of the judgmental feelings we're all trying to avoid attaching to glucose numbers, while others felt the topic is trivial compared to other concerns, like the need for greater meter accuracy.
Of course many of us had questions about the Solo MicroPump Insulin Delivery System that Roche bought way back in April 2010. The first generation was approved by FDA, but Roche has decided not to market it commercially in the U.S. because the system doesn't have an integrated blood glucose meter. Apparently, they feel this is essential for going head-to-head with the OmniPod, which has an integrated meter. They were completely mum on timing when the next-generation Solo might be submitted to the FDA for review. Grrr. We're probably better off looking at what's being unveiled in Europe next year to get a sneak peak of what's to come here (!)
We wrote about the new Accu-Chek Spirit Combo that won FDA approval on July 18, which uses Bluetooth wireless communication between the meter and pump -- rather than RF technology used by competitors. Roche claims this is "a breakthrough" that helps increase security, and that it is part of a bigger strategic plan for more complete product integration of Bluetooth wireless meters, tubed and patch pumps, Continuous Glucose Monitors and the whole online mobile health cloud.
Of course we wonder whether this means a move toward truly open industry standards, or just more connectivity between Roche's own products...? In a group discussion, many of us expressed our core frustration that we can't share data between devices due to a lack of industry standards for integration and interoperability. Roche countered that they are board members of the Continua Health Alliance, a consortium whose stated goal is to create industry standards on health data. Unfortunately, Continua has been all talk and little action to date.
We did have a chance to tour Roche's manufacturing plant where these products are actually made. That was a highlight. It was cool being able to see where they trial test all the new meters and test strips. To me, it was like a blood meter version of a giant high-tech printing press, where they're making futuristic D-tools. David Edelman of Diabetes Daily posted a great recap of this tour and the steps in how a strip is made, in a plant where 100,000 vials of 50 strips are made in one lot and as many as 15 million strips are produced in a day. I was intrigued at the myriad button-pushing and floor-smashing test machines they use to check product quality. Not to mention the two "Rock 'Em, Sock 'Em"-style machine arms that churn out 7,000 strips in a daylong quality check shift!
Still, any excitement about the new Bluetooth-enabled Roche Combo meter evaporates when you think about the fact that this product has been available everywhere but the U.S. since 2008... Now it is finally approved by the FDA, but keep this in mind: Since it's using 2008 technology, this new meter still requires coded strips -- a step backward that most in the industry are moving away from. This underscores the sad reality that not only will we probably be waiting awhile until we can actually purchase it here, but when it does arrive, it may very well already be outdated! (Another key reason why we need to push the FDA to be more efficient so that U.S. companies aren't forced to head to Europe first with their diabetes innovations)
So, what's next?
With other companies jumping onto the summit bandwagon that Roche spearheaded, we chatted about the event's future and whether there's even a need for these anymore in the existing format. From the discussions among the advocates, an important message crystalized: it's been great to create lots of blogs and communities and twitter activity. Now it's time for us advocates to make a difference on a larger scale.
CWD Founder Jeff Hitchcock and respected consultant Kelly Close suggested that the future might involve a Pharma-led summit in Washington D.C., where patients could actually engage with Congress members, FDA officials and others on Capitol Hill. Brilliant!! No concrete proposals or action plans came from the Summit just yet, which may be a sore spot for some. But I honestly see value in the chance to just to discuss and explore how we can all work together toward "doing better." This is gradually happening already, through the efforts of the Diabetes Advocates group to help individual advocates join forces.
So that's the road we're on... er, the mountain we're climbing. Actually, it's more like our community is a mountain range and some are climbing different mountains simultaneously, journeying toward related but somewhat different heights whether it be inspirational or FDA regulation or improved interaction with medical professionals.
D-Dad Scott Benner emphasized that we need to share our real stories in easy-to-understand ways for people who so desperately need that support, and DHF Founder Manny Hernandez noted that we can use those newly-inspired and connected DOCers to create an "army of advocates" to help carry our message beyond the DOC.
That is the power of these summits, we believe: Bringing these D-advocate minds together IRL in one place that otherwise wouldn't be possible. The companies hosting these events are, as metaphorically noted, providing a rope to help us climb the mountain(s). We have to say thank you for that willingness to lend a hand.
None of this is confined to a single summit or any particular event, but is rather a continuing advocacy movement that anyone can be a part of if they wish to be. In our opinion, that is huge!
DSMA founder Cherise Shockley said it best: "We can't rely on Pharma to get up and do something. If we want to make noise... we have to stand up and do something ourselves."
Shaping our story, making a difference. It's on us, no matter who's helping along the way.
Disclosure: Living a short commute from downtown Indy, I didn't have to take advantage of the travel budget offered by Roche and I chose to commute instead of staying in the fancy hotel. But Roche DID pay for about five meals, my hotel valet parking for three days, and a ticket to a minor league baseball game. They also gave each participant a goodie bag with a few snacks, an Accu-Chek Nano meter and a Glooko connection cable to try out.