Medtronic Diabetes Advocate Forum: Takeaways.

There are a lot of things I took away from the Medtronic Diabetes Advocate Forum: we had a whole day (and a half, if you count the dinner the night before) of speakers, dialogue and brainstorming with a bunch of really dedicated, passionate and smart people - on both sides of the proverbial table.

I have never been a Medtronic customer. I have no immediate future plans to become one. I have no clue why I was invited, but I have an idea.

Pharma companies that are willing to congregate (and foot the bill for) a group of patient bloggers and have an honest interest in what we think about their company have cajones, in my book. To me, it's a sign that they really are interested in engaging with the people their products benefit - that they realize that listening to the consumer's view, and the ways in which they want technology to help them, are worthwhile endeavors. A running theme throughout the Forum was that both Medtronic, and those of us who benefit from their products, agree that medical technology needs to take the viewpoint of the patient. Tech needs to make our lives easier - in the ways we live it, at the times we need it, and it needs to get out of our way when necessary.

"Who are these people?", you might ask. I'm not sure why no one ever lists out and links up these big blogger
conference photos (probably because it takes a lot of time?), but I remember coming into the DOC and finding
photos like this one and thinking, "Okay, I know who that that and that is, but who are these other people? And why is no one naming names?" So here I go naming names and linking links, from left to right, according to head placement.
Cherise Shockley, Bennet Dunlap, Karmel Allison, Jeff Hitchcock, Tom Karlya, Blair Ryan, Brandy Barnes,
Amy Tenderich, George Simmons, Kelly Kunik, LeeAnn Thill, Elizabeth Edelman, Scott Johnson, David Edelman, Dana Lewis, Sarah (Sugabetic), Sara Knicks, Adam Brown, Abby Bayer, Mike Hoskins, Leighann Calentine,
Scott Strumello, Karen Graffeo, Gina Capone, Kelly Close, Kim Vlasnik, Jess Collins, Manny Hernandez. Whew.

Here are some of my bigger (and not so much big, but anecdotal nonetheless) takeaways.

• It's easy to be cynical; to lump everyone into one category. "Pharma doesn't care about people with diabetes; they just want our money." "They are too slow/not speaking up loudly enough to the FDA/making products with planned obsolescence." I had the chance to meet several Medtronic employees - executives, PR reps, engineers, and the like. I got to hear directly from some of these people that they have a son, daughter, sibling, or parent affected by diabetes. I heard their personal stories of what drives them to do the best work they can, and I believe that they are doing just that - their best. I can't say that all of those presumptions are false (does anyone know the answer to that?), but I can tell you that there are good people at Medtronic who are doing everything they can to improve the lives of people with diabetes. I do believe that.
• Medtronic started out in a garage in Minnesota. (Minimed started in a barn.) Everyone has to start somewhere, and every great idea sounds completely crazy at first.
• An aspiration at Medtronic is to become the Harley-Davidson of medical brands. What was meant here is that Medtronic wants to be the kind of brand that inspires a loyal following, and that people enthusiastically recommend to others. The kind of brand that people would willingly tattoo on themselves. (You're kind of already there in that sense, aren't you?) That takes a LOT of work and time to do, but it's a great goal.
• In addition to being a faux motorcycle manufacturer, Medtronic would also like to be the next Apple. Anticipating needs (in fact, even recognizing them before the consumer does) is the name of the game here. There's also the idea of using personal and social data, and then tracking the resulting patterns, so that your devices can make suggestions. ("Your friends like ABCD app for carb counting. You frequently ask for advice on bolus amounts. Want to try it?") Think Trip Advisor, but for your pancreas.
• A handful of us were able to take advantage of the unique opportunity of touring the CGM manufacturing facility on Friday (most others had done the tour last year), and I had no idea that most of the process is performed by people, not solely just robots. I mean, every single one of their sensors that go out is worked on by one of six ladies, at a certain step. Six! For all of the sensors ever, anywhere! Wearing our clean suits and huge plastic glasses, we learned about the makeup of the sensors - real platinum and gold in there, folks - and just how stringent they are when it comes to safety. There are many points in the process where a sensor might be thrown out because it isn't meeting some criteria - and every partial sensor our tour guide would bring over was tossed, as it was then contaminated. Wow.
• There's an angle to the whole insurance coverage mess that I hadn't considered until it was brought up in one of the discussions. Paraphrasing here: "Patients need to ask insurance companies to cover new technologies (we were discussing MySentry, I believe) to demonstrate that there is a need for this kind of thing. If people aren't asking for it, they have no reason to consider covering it. Medtronic can tell insurance carriers 'Hey, you should cover this', but those carriers will turn around and say, 'Of course you do - you're the manufacturer'." It's a valid argument for appealing again and again when insurance turns you down - don't think of it as a "no". Think of it as a "you need to wear me down a bit more". (Downer? Kind of.)
• One of the brainstorming sessions addressed the following loosely-remembered question: "How can industry engage in the online community in a legit way? What should they do/not do?" It's a tricky question, that. Everyone has different ideas about what is okay - some want that interaction, some want to be left alone. Some want to see the faces behind the name. Some want quick response time. One of the things suggested was creating a "jumping point" for folks who are newly diagnosed or newly put on pump or CGM technology - there's no need to recreate the wheel by making a whole new "community" for these folks. Just provide a way to connect them to the communities and resources that already exist; build off of what's there already. And secondly, pharma can help us as patients to be our own advocates when it comes to addressing the FDA to submit comments on guidance or other procedures. To have someone point us in the direction of what is important (and why and when) to the FDA, we can form our own opinions based on that and strengthen our collective voice to help guide change.
• And lastly, Dr. Fran Kaufman (V.P. of Global Medical Affairs for Medtronic Diabetes) spoke to us about "volunteerism". We saw slides from her travels to places like Brazil and Haiti, and heard the stories of her work there. I can't speak for anyone else in the room, but my eyes were opened once again to how very lucky most of us are - we have access to the medicine that keeps us alive; we have refrigerators to keep that insulin at the proper temperature. I mean, Haiti has an 85% mortality rate for people with diabetes in the first year after they are diagnosed. It's something we can help change, but it requires prolonged attention and action. (Visit Life For A Child for more information on how to do just that.)

The Medtronic Forum was real people with (or parents of children with) diabetes talking with real employees. Real conversations about what is important to us as people with diabetes ("Can you make the alarms even louder? Where's the 'I KNOW!' button? Can you place more of the cognitive burden on the devices, rather than on us?"). What I hope comes from those conversations is some real feedback-driven improvements to the lives of people with diabetes.

Disclosure: Medtronic paid for my flights, meals and ground transportation during the Forum Thursday evening and Friday. No one was paid to attend, nor was anyone obligated to write about the Forum.