As many of you may know, my husband/consulting partner and I were approached by Roche Diabetes’ Accu-Chek team a few years back with a challenging project request: how could we help them best “embrace” the burgeoning online diabetes patient community (what is now known lovingly as the DOC)? Our suggestion was hosting an in-person summit, to offer us cyber-advocates a rare chance to meet each other, as well as an unprecedented “peek behind the curtain” at the real goings-on of a Pharma company that serves us. Obviously, the idea was a big hit, both for Roche and competitor Medtronic Diabetes, which just hosted its 2nd annual “Diabetes Advocates Forum” at its Southern California headquarters about 10 days ago. What struck me was the ease and “warm fuzziness” with which they pulled it off, I must say.
The very first time we were all invited to visit Roche, there was a lot of animosity in the air (ooh, those evil Pharma folk!) Talking with and getting to know the people behind the brand logo helped ease the tension. But most of us — myself included — were still adamant that we’d never accept an invitation to an event that was “all about them — just a big product presentation.” In follow-on summits, Roche was careful to offer substance of “bigger meaning” to us advocates, including sessions with key people from the ADA, AADE and IDF. They went to great lengths in the last few years to amp up the social side of their Summit, too, with pool tables, an open bar, karaoke machines, and photo booth, to name a few of the perks. A little fun goes a long way toward breaking the ice, of course.
Yet Medtronic didn’t have to try nearly so hard. In fact, what they offered was basically an event that was “all about them — a big product presentation.”
Yes, this year they did include a talk by Chuck Eichten, the funny and creative author of “The Book of Better” about insulin pumping (errr, product tie-in?) And Chief Medical Officer Dr. Fran Kaufman gave a moving talk about her work providing insulin to needy children in 3rd World countries. She’s very impressive and personable; it’s pretty much impossible not to like her.
But the meat of the ‘Advocates Forum’ actually focused on Medtronic’s product pipeline, something we (gasp!) all really wanted to know about. 
Low-glucose suspend technology, as well as their new smaller Enlite CGM sensor are still stuck in approval purgatory, and their patch pump technology is, well… just stuck. But exciting things are on the way: they may well be the first to release a “combo” patch pump with two cannulas built right in, just inches apart: one for insulin delivery and one for CGM! An image of their “combo inserter” design appeared in the slideset (I’m trying to get a copy). How sweet would the combo deal be?!
They gave us a full demonstration of the MySentry CGM remote monitor, and even went so far as to offer a MySentry loaner system to each of us for a free three-month review if we please — which I daresay would have scandalized us DOC’ers a few years back! They’re pushing product! But oh, how we want and need these disease-care tools. They make the stuff and we need it. What’s wrong with that?
The congenial atmosphere of this event was surely due in part to precedents set, i.e. our familiarity with being hosted by a Pharma company nowadays (save for a few newbies who warmed our hearts by repeating, ‘I can’t believe I’m meeting all you guys!’ You know who you are ♥)
But it also had a lot to do with the Medtronic People. The PR/Com folks who handled the hosting are 
passionate, knowledgeable, and down to Earth; it really felt like they “get us.” You can’t help loving what they’re doing with their plush-toy for teaching T1 kids who are new to pumping, for example: the new and improved Lenny the Lion now has a much more fun and interactive website, and even new spots on his tummy and arms and legs for practicing infusion sites. Seems like they definitely “get” what kids with diabetes want, too.
Then there’s the amazing Brainpower at that place. Product strategist Lane Desborough never ceases to blow me away — especially now that I’ve met his team of (literally) rocket scientists working aggressively on Artificial Pancreas algorithms. Their little corner of the Medtronic HQ is papered with sticky notes, manifestos, and complex charts. It looks like the best of any design lab in Silicon Valley. I think we were all struck by how lucky we are to have these Big Brains working on our disease problems. If they can’t help us automate our broken pancreases, who can?
Not to gush too much, but picking up on their passion, it really felt like we truly are ALL on the same team.
Then Fran Kaufman does the unthinkable. She invites a bunch of diabetes bloggers to dinner at her house, with her husband, son, daughter-in-law and a few personal friends in tow. It’s like we matter. It’s like we’re her peers. It’s like she’s as appreciative of our work as we are of hers. This is a former president of ADA, consistently named one of the Best Doctors in America, with a resume that would knock your socks off.
So, are we becoming “corrupted” by this close association with Pharma? Or, are we finally finding the path to “move the conversation forward” between the patient community and the industry/medical community? I hope the latter… I hope we still remain patient/consumer “watchdogs” on the lookout for abuses — but not the kind of watchdogs that bite and attack just for the sheer pleasure of it. Rather, I hope it’s possible to be on a first-name basis with the Powers That Be and still offer constructive criticism when it’s due.
* * *
Here’s a roundup of what our peers reported from this year’s Medtronic Diabetes Advocates Forum:
♦ David Edelman gives a blow-by-blow description of the entire day, including comments from the attendees. Very informative!
♦ Leighann Calentine gives her own brief overview of the technology Medtronic is working on: Enlite sensors anticipated to be out by the end of 2013, the patch pump / CGM combo in development, and the work being done by Lane’s team on the APP.
♦ Karmel Allison shares a detailed overview of the discussion on how to build the closed-loop system and the current hurdles in making it reliable.
♦ Bennett “Badshoe” shares his impressions of how building the closed-loop system is like “engineering art.”
♦ Kim Vlasnik includes a video of the demonstration of the MySentry product.
♦ Sarah shares her thoughts on better use of CGM data.
♦ Scott Johnson writes an overview of the Forum, and also ponders the ethics of borrowing the MySentry.
♦ Sara K includes a 9-minute video of Lane’s talk with the attendees.
♦ Jess writes mostly about her excitement in meeting others from the DOC and being part of the Medtronic DAF event.
♦ Karen Graffeo is simply inspired.
♦ Abby had a whole array of emotions to share.
♦ Naomi Kingery, who actually works for Medtronic, is all about the “hope, faith and friendship” that advocates share.
♦ Kelly Kunik is… um… obsessed with cupcakes?
♦ Mike Hoskin’s post is a photo scrapbook of the event, and also of the touristy stuff his gang did on Saturday around LA 
♦ And finally, Amanda Sheldon, one of the hosts from Medtronic PR, writes on the company’s blog about how glad they are “to hear from the online community about what is working, what is not, and to determine together areas to focus on.”
Well-played, Medtronic!
I’ve read some of the blogs about the event and all I can say is … Medtronic certainly got their money’s worth. I did not detect a single probing or critical question. I’ve been using a Medtronic pump for 12 years and it’s fine, but let’s be honest. you were being used. Nothing wrong but my perspective is different. I’m a T1, a pump user AND an honest-to-god reporter. As far as I can tell, the “advancements” are incremental and I did not see any discussion of whether these steps were valuable or simply a new revenue stream for the company. It would have been nice to have that question and other posed. Such as, How does Medtronic price it’s products? With health care costs soaring, what is the company’s response to containing costs? There are manyt, many more. It’s fine to have fun and go on a junket, but a touch of skepticism would have been nice too.
I appreciate DCScribe’s perspective. As a fellow reporter, I’ve always wondered just how objective bloggers (few of whom have journalism training) can be about going on press junkets.
@DCScribe @Lyrehca – I hear your concerns. I think part of my point was that the Advocates group has “cycled through” a lot of the more contentious conversations with these companies in past meetings — but of course, pain points do remain.
This is a good reminder to me that next time we’re heading into an event of this nature, we should query all of our readers about the types of probing questions they might like us to ask.
If the two commenters above had read my post, they would see that I actually grilled the general manager of the CGM division during dinner about how painful the CGM insertion is and how terrified my daughter is to have it done.
I use these types of events to give direct feedback–good and definitely bad–to the people at these companies who can actually make decisions.
These types of events are a good way for consumers (i.e., patients) to make their voices heard. It’s not all sunshine and roses. The DOC is a very critical lot. It just so happens that the products/technology that they introduced to us at this event were ones that were well-received. We DID in fact question pricing and insurance coverage of products such as the mySentry (and as a disclosure we are trying one out and are currently going through insurance to try to get coverage so that we can keep it).
The mySentry is a product that sleep-deprived and stressed out parents such as myself have been yearning for for a long time. It won’t get covered by insurance companies unless there is a demonstrated value. Consumer trials, such as the one that they are offering attendees, can help give voice to the patients who seek this technology and can help teach them about it’s utility.
Wait for my reviews of the CGM and mySentry. I’ll definitely tell it like it is, without rose colored glasses!
(And as a side note: I don’t consider these “press junkets.” I have been to press junkets and plenty of “mom blogger” events. I find value in these events put on by pharma. The patient voice can be strong and needs to be heard, which the DOC is trying to do. Calling yourself an “honest-to-god reporter” is a way of trying to minimize the voices of bloggers who you imply, by using that phrase, are not “honest-to-god.” Unite, don’t divide. Just saying.)
You know, us “bloggers” may have little journalism training (tho some of us do) but we have plenty or real world experience with using these devices, mistrust of pharma and advocating for ourselves and loved ones because no one else will.
Honest-to-god reporters or not, these individuals are putting their names and health conditions out here on the web for all to see.
If you look at the history of some of these events, you can see that the participants have gotten deeper looks inside as the years have gone by.
You seem to be missing the point of the whole thing here. There is a “patient” voice that companies MUST begin to listen to if they really want to be able to take advantage of our years of experience in designing these devices. We do this crap every damn day. Let us help. Some places are and outcomes are better.
Did Medtronic benefit? Sure they did. Did the community benefit? It did as well.
I find it distasteful to denigrate these individuals because they don’t have the “proper” kind of education. They are intelligent, motivated and, most importantly, dedicated to the diabetes community.
Thank you Amy and the other “bloggers” who wrote about this year’s diabetes advocates forum. I agree with Leighann and Scott – you don’t need to be an “honest-to-God” journalist to write about this. I am patient and as a patient, I read and write about the things that are important to me. I don’t need some journalist asking if Medtronic made money – I would bet money that they did. As a bean counter and someone with common sense, I know that these companies need to make money or they won’t be producing stuff. I am glad that they are starting to listen to patients (and Moms of patients!) who are living with this disease every day.
There is no way we, the Diabetes Online Community, will ever be completely unified. There are too many of us with different interests for that to happen. I think it’s important that we question one another and hold each other accountable. That’s the only way we will grow and increase our knowledge and viewpoints. As someone with formal training and education in journalism, there is a difference in blogging and journalism. It doesn’t mean bloggers don’t have a vested interest or valuable advice nor does it mean writers must have a journalism or writing degree, but there is a difference. And I say that with the utmost respect for every writer, but I say it as a journalist AND a blogger. Every person’s points are valid, whether we agree, because they matter to the person who first speaks them.
I won’t pick on you all for going to Medtronic and attending this event. However, I find the lack of progressive technology for T1 diabetes equipment laughable by TODAY’S standards. The pumps that Medtronic makes are OK, but archaic in size and design. Wow, it can calculate things, so can I. The MySentry could have been written into an app and downloaded to a smartphone but where’s the price gouging in that?
If you ask the really tough questions, you won’t be invited back. I get it! Price points, design, and bailing on the implantable pump for the incredibly more lucrative external pump makes sense. Would an implantable pump only have a 4 year warranty? It’s a business and nobody want’s to minimize their money train.
I hope you do more with pressuring the JDRF, DRI and others to actually get a CURE to the bedside and not waste energies on free publicity for tech. companies.
Thanks for the post, Amy.
And to those who questioned the integrity of the bloggers in attendance, my answer is for you.
All of us living with diabetes (our whose children have diabetes) who attended the Forum (And Roche) worked hard to represent those who were not in attendance.
And I can assure those who questions our objectivity that they needn’t worry about that .
Having our expenses covered will not cloud our view – not in the least.
My expenses being paid will not bring back the people I lost to diabetes in my life, nor will it bring back my working pancreas or reverse any damage to my bodacious bod courtesy of diabetes.
And the fact that you think it would is not only offensive – It’s down right infuriating and untrue.
Knowledge is power- Especially if you’re a patient. By attending The Medtronic Diabetes Advocate Forum I not only empower myself by engaging with Pharma face to face and no holds barred. It’s about promoting change for the better regarding diabetes, diabetes options, diabetes technology, a cure for diabetes and life with diabetes.
btw: I have degree in Litt/Communications with a minor in Marketing – Not that it matters.
Kelly
AMy – Also here’s my 2nd post on the Forum – Just up an hour ago!
http://diabetesaliciousness.blogspot.com/2012/04/my-thoughts-on-2nd-annual-medtronic.html
I am glad the Pharma companies are engaging patients instead of reporter. 90% of the time reporters get it wrong when they report on diabetes, I do not trust them to get reporting on the devices that we use accurately nor do I believe they will ask the right questions.
A big thank you to all the diabetes advocates who attended and to the Pharma companies who see the value in talking to us, the end-users.
Well, my question is that if WE don’t work with Big Pharma, the professional diabetes organizations and the FDA to promote our viewpoint, who will? Honest dialog need not be hostile, and anyone who has a question should ask it, no matter what it involves. Seem obvious to me that these organizations need to be aware of the financial hardship their products create, as well as the need for better devices and medications. And yes, they do need to listen, but we also need to learn their side of the equation. Innovation requires funding, and right now, it seems that most of the funding comes from sales. So their reason for watching the bottom line seems obvious to me. So maybe we need to advocate for more resources to serve the uninsured and poor. But the only way we can advocate is to find ways to be heard in the first place. So I think we’re headed in the right direction by working to collaborate with these organization.
As a fellow DOCer and blogger, I am sorta set back by the comment basically stating that we aren’t being “honest-to-goodness” just because we didn’t post anything negative towards the forum just because our way was paid. I know all of the attendees, and I could bet anything that none of them were “swayed” by the event being paid for. As a matter of fact, there were plenty of times when in discussions, dislikes and negative aspects of the product or products were brought up. And that was the whole point of the forum – to get feedback on how they can improve their product. They are a company, and yes, they are out to make money because without money, no company could survive. But they had us there to provide feedback – good or bad – on how they stand now and what they can do to improve now and in future products. We all brought our own opinions as well as any opinions or questions from around the DOC that were being asked about the topics as they were presented.
Besides, we were invited as Advocates, not Reporters. And we did just that. We ALL – from reporter to simple blogger – advocated for ALL diabetics, honesty and from the heart.
Don’t misconstrue, I’m sure you all were advocating for T1′s and our frustrations, both good and bad, regarding products, product pipelines, and price.
That said, as a T1 for 30 years I don’t see much change, or listening, by the tech companies to the patient population/advocates. They seem to continue down their path, no matter the feedback. An example.. Medtronic was ripped apart online for bailing on the implantable pump and the price point for MySentry and so I will ask, “Did they comment on those two specific areas?” If so, were you satisfied by the responses.
Feedback can be delivered in a very respectful, honest, fair, and non-confrontational way but also still getting one’s point across.
Will we see a more indepth posting of the types of Q&A that was conducted as well as any specific issues you can comment on? Although, I would believe NDA’s were signed prior to the event.
Thank you.
@DCScribe. Here is a great idea that I am certain you will applaud: place all medical innovation in the federal governments hands. I am certain that your feelings toward this industry would quickly change once innovation was slowed to a snail’s pace. If it takes years to get a product past the FDA, how long woudl it take to develop a new product? Regarding price, take a look at some of the new medicines like Victoza. $5500 PER YEAR!!! The contract price of a Medtronic pump is around $4800. And the pump may last you 4, 8, sometimes 10 years! Let’s be conservative and just say it lasts you 4 years. Treatment with a pump is about $1200 per year for supplies. That is $4800 for pump and $4800, totalling $9600 for supplies for 4 years. In comparison, Victoza is $22000 for the same period of time. Some chemotherapies are nearing $100,000 for a complete treatment. My plumber charges $100 to come to my home for the first hour, then and additonal $65 per hour. THAT IS MORE THAN MY DOCTOR CHARGES! You pay more for your monthly cable and cell phone bill than you do for your insulin pump and supplies. Stop your whining and just be happy that there are people out there who are working their butts off trying to advance the technology for treating diabetes. It isn’t perfect, but it is moving forward. I am sure that you do not work for free, so why should everyone else around you?
@ John. Do you honestly know why they abandoned the implantable pump? First, the cost of the implantable pump would be beyond the capability of almost every patient. An implantable pacemaker/defibrillator is $60,000 or more. Second, the surgical training and maintenance would limit the amount of physicians who could prescribe the pump. Third, the science still is not there for the implantable cgm. I can go on and on. They abandoned it because it was a better decision to be able to offer something that can be assessible to everyone instead of just a few individuals. I admit my bias. I worked at Minimed for a long while. Go ahead and ridicule their people all you want. But you better look out when you do it. It is a safe estimate that 20% or greater of Minimed’s employees are pumpers also. Many of those I worked with on a daily basis care more for advancing innovation in diabetes than you could ever imagine. One of the lead engineers left a very good income at GE and moved to Medtronic to be a part of the solution. His son was diagnosed with T1 and he felt it was his “calling” to do more. It is easy to throw stones on the internet without seeing the ripples you create. These are good people with big hearts who are giving it their all. Money is the last thing on their mind!