Showing posts with label Diabetes Advocate Forum. Show all posts
Showing posts with label Diabetes Advocate Forum. Show all posts

Friday, April 6, 2012

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 ShockleyBennet Dunlap, Karmel Allison, Jeff Hitchcock, Tom Karlya, Blair Ryan, Brandy Barnes,
Amy TenderichGeorge Simmons, Kelly Kunik, LeeAnn Thill, Elizabeth Edelman, Scott Johnson, David Edelman, Dana LewisSarah (Sugabetic), Sara Knicks, Adam Brown, Abby Bayer, Mike Hoskins, Leighann Calentine,
Scott StrumelloKaren 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.

Thursday, April 5, 2012

Reflex Theory.

At breakfast last Saturday morning, diabetes came up in conversation. (Weird, right?)

From L to R, back row: Bennet, Kelly, Karen, Sara and Mike.
Front row: Jess, me, Abby, LeeAnn, Leighann. Photo credit: Bennet.
The waitress came around with coffee (lots of takers there) and orange juice (I was the only taker, with a downward CGM arrow poised somewhere in the 60's). The speed with which I drained my glass and the location of our breakfast (we were adjacent to a bar) lead me to an epiphany of sorts.

Lately I've made a lot of beverage switches - absolving myself of Splenda in my morning coffee, avoiding soda and choosing tea or Crystal Light Pure instead, and when it comes to social drinking I've been calling a glass of wine over to my team more often than my fruity "girly drinks" of yore. You know the ones - cranberry vodkas with lime (which I've recently learned are named Cape Cods - sounds much more fancy), those sugar bombs called Fuzzy Navels, and the deliciously evil combination of pineapple juice and cake-flavored vodka. At some point I realized how quickly I guzzle those drinks, whereas a glass of wine I tend to sip in a more reasonable and ladylike manner.

It hit me, as the liquid disappeared down my throat, the reason I might be consuming those types of drinks so quickly.

It's a reflex.

Ever since I was a child, juice has been a form of medicine. Orange juice, in particular, was something to be administered in one continuous gulp as I struggled to hold the glass; shaking, sweating and completely out of sorts. The taste of oranges signals panic. Fear. Desperation. It amplifies the screaming in my head that says to EAT EVERYTHING EVER RIGHT NOW OMG I'M DYING.

Why did I expect that to be different as an adult, and with something else added to it?

I'd be interested to hear if anyone else has found this to be true - does anyone else feel like they'll never be able to drink a glass of juice like a "normal" person?

Tuesday, April 3, 2012

Medtronic Diabetes Advocate Forum: Demo, Discussion and Disclosure.

One of the many cool experiences at the Diabetes Advocate Forum last week was seeing the new remote CGM system, MySentry, in action.  A Medtronic employe performed a demonstration for us, and there were several members of the management team available to field our questions (as well as tolerate our propensity to crack snarky jokes).

I grabbed some video of most of the demo and the discussion that followed it (ranging from FDA obstacles to insurance coverage to "Does it stream Netflix?") (spoiler: it doesn't). As someone who isn't currently (and has never been) a Medtronic customer, I appreciated learning about what this MySentry thing is all about - and hearing those LOUD ALARMS in person.

Here you go:




The event held some surprises for those of us who attended; among the biggest was that Medtronic Diabetes announced that any of us in attendance at the Forum are offered the chance to trial the MySentry system for three months at no cost to us.

I haven't determined an answer to this offer yet - but I wanted to disclose this to you all, and let you know that none of us knew about this offer when we accepted the invitation to attend.

Is it an incredibly generous opportunity I'm grateful to be offered? Yes. Does it make me feel a little weird about accepting the offer? Yes. While the MySentry sounds like a great tool for a lot of individuals (parents of CWD, folks who already use the Medtronic pump and CGM, and people thinking of making the switch to Medtronic in the near future, for example), I'm not sure I'm one of them. I will, however, be interested to hear from others who trial the system what they think of it.

The offer also makes me wish that so many more advocates for the diabetes community could have attended, and could be offered this same opportunity. (Sara makes some great points today along these lines - go read what she wrote here.)

Thank you again to Medtronic for hosting this event - more to come later this week!

Disclosure: Medtronic paid for my flights, meals and ground transportation during the Forum Thursday evening and Friday. I, and others, chose to stay an extra day and were on our own for costs incurred during that time. We were not paid to attend, nor are we obligated to write about the Forum.

Monday, April 2, 2012

Medtronic Diabetes Advocate Forum: A Few Visuals.

I spent the past four days in the Los Angeles area in order to attend the 2nd annual Medtronic Diabetes Advocate Forum, and I'm totally exhausted.

You'll have to give me a bit of recovery time before I go into details, but in the meantime, here are a few snapshots. (I'm also working on getting some video up - bear with me?)


DSMA Live presents Manny Hernandez with the first DSMA Salutes award for his advocacy work in the diabetes community.
DSMA Live - if you missed the episode, visit www.dsmalive.com.

George Simmons, Kelly Kunik and Kelly Close lead a group discussion.
Group discussion led by George, Kelly and Kelly.

What heaven looks like.
Well of course we did.

Santa Monica Pier
Santa Monica Pier.


How did the Getty Museum know to mark this hallway just for us?
I guess we were meant to be at the Getty Museum? (L to R: Bennet Dunlap, Kelly Kunik,
Leighann Calentine, Sara Nicastro, Karen Graffeo, Mike Hoskins, and part of
Jess Collins' head.) 
Van Gooooooogh!
Van Gogh! My hero! Also, neveryoumind the rain-induced mess of a hairdo I've got going.

Blue Friday!! (photo credit: Cherise Shockley) L to R: Kelly Close,
Mike Hoskins, Karen Graffeo, Leighann Calentine, me (Kim Vlasnik),
Sara Nicastro, Scott Johnson, Amanda Sheldon (Medtronic), Jess Collins,
Sarah (Sugabetic), Cherise Shockley
Disclosure Time: Medtronic paid for my flights, meals and ground transportation during the Forum Thursday evening and Friday. I, and others, chose to stay an extra day and were on our own for costs incurred during that time. We were not paid to attend, nor are we obligated to write about the Forum.