Group Photo from the 2012 Medtronic Diabetes Advocates Forum

Medtronic Diabetes hosted the second ‘Medtronic Diabetes Advocates Forum’ at their headquarters in Northridge, CA last week.  Myself and nearly thirty others involved in diabetes social media spent about a day and a half visiting with some of the brightest minds at Medtronic.

Picture of Lane, Cherise, George, and Scott

Lane with the DSMA Live Crew

I am always encouraged by the caliber of people that are involved in making life easier and safer for people with diabetes, and I’m not exaggerating when I say that Medtronic has some of the best.  Lane Desborough continues to be the shining beacon of brilliance to me.  No pressure Lane. :-)

We had an opportunity to meet most of Lane’s team, and there were more advanced degrees from many different disciplines than I can even understand.  I was so impressed with these guys and their resolve to design safe, easy to use, and most importantly, effective management tools.

A funny typo on the agenda had Lane WAY ahead of the game...

That was quick! The loop is closed! Hoorah! (NOTE: This is a TYPO!)

There is an area just outside of Lane’s office where they have daily stand-up meetings.  The walls are covered, floor to ceiling, with charts, principals, design goals, data, and more.  They were almost literally alive with information, but that isn’t what impressed me.  What impressed me was Lane and his team talking about certain projects, and that they knew which driving principals certain stages tied back into.  In other words, these are not just a bunch of words on a wall.  They are actually becoming reality through the work these guys are doing.

I heard the phrase “reducing on-body burden” many times, which helped me shift perspective a little bit to see exactly how burdensome all of these things can be just to wear.

Another thing that struck me was the foresight to build a “privacy” button on the MySentry device.  MySentry is a device that was born to show your CGM number to anyone who can see it.  That is great, and useful for almost all of us.

But what about those times where I’m in a funk with my diabetes?  What about those times where I need to put my head in the sand for a day in order to regain my sanity? On those days I do not want anyone else to see what my numbers are and bug me about them.  I know they’re a mess, and while it looks like I’m totally ignoring things, in reality I am taking a small step backward to gather myself again.  Hello privacy button!

Picture of Chuck's autograph in my copy of "The Book of Better"Better – Chuck Eichten!

Chuck Eichten was the guest speaker on Friday afternoon, and he was great.  Chuck has lived with type 1 diabetes for a very long time, and recently wrote a fantastic book about his outlook on life with the big D.  If you haven’t already check out “The Book of Better“, I highly recommend it.  You’ll enjoy it, and it will hopefully help bring your perspective to a place that’s a little bit better…

I had a chance to visit with Chuck a bit, and he’s a great guy.  I could chat with him for hours, and hope to have an opportunity to do so sometime.

Global Advocacy

Dr. Fran Kaufman shared an afternoon with us talking about the work she is doing around the globe.      It is eye-opening to see conditions around the world, diabetes or not.  To think that a diagnosis of type 1 diabetes is a death sentence in many areas is pretty heavy.

Dr. Kaufman and her family have made unbelievable sacrifices to try and make a dent in this problem, and for that she has my everlasting gratitude.

One of the key points that I’ll forever keep close is that we need to do more than just figure out how to get supplies and insulin to people.  Without education, all the supplies in the world are useless.

Thank you Dr. Kaufman.

Thoughts?

I always leave events like this inspired.  Sometimes that inspiration comes from the company or organization that brought us all together, but more often it comes from my friends and peers who are constantly looking for more ways to help people.

Here are a bunch of people who live well with diabetes, sometimes raise families, often hold full-time jobs, and somehow find the time and energy to dedicate their lives to helping others live better with diabetes.

The relationships that start, and build, at these events are more important than many people might realize.  Through these relationships we not only push each other by brainstorming and collaborating, but we also shine a light on personalities that don’t only exist behind a computer screen.

MySentry Trial?

In a surprise announcement, Medtronic offered to let all of us try a MySentry Remote Glucose Monitoring System for three months.  I haven’t decided yet how I’m going to respond to this, but wanted to disclose the offer and make sure everything is out in the open.  None of us knew about this offer prior to accepting the invitation to the meeting (words proudly borrowed from Kim).

I have mixed feelings about this.  On one hand I’m excited, and think I’d like to give it a try.  But on the other hand, I know there are always issues and questions around ethics and honesty when given an opportunity like this.

I’m currently wearing an old Cozmo pump, which is long past it’s warranty expiration date.  So this offer means I would not only be able to try the MySentry system, but that I would need to be set up with the whole family of Medtronic products.  I’m loyal to my Cozmo, almost to a fault.  I will continue to say that any pump on the market is a step backwards from Cozmo until there is a pump that offers better features.  But does that mean I shouldn’t try this?  I don’t know.

Are there ethical concerns that you have about this?  Would you be willing to share those concerns with me? I don’t want to make any missteps that would damage the trust I’ve worked hard to build over the years.  I’m worried that the temptation to try these new gadgets is clouding my judgement on this issue.

Medtronic hasn’t asked for any favors with this, and if their products stink I would say so.  However, I’m not a reporter.  Reviews and such are not my strength.  Would I be able to cover this well enough? It may also open up an opportunity to compare the Dexcom CGM with the Medtronic CGM component (if I can tolerate all of that ‘on-body burden’).

I don’t know what to do. Please help me.

Disclosure

Medtronic invited me to attend this event, paid for all travel expenses, lodging, and food for the duration of the event.  We have all been invited to try the MySentry CGM system for three months (details pending).  Medtronic did not ask me to comment or write about my experiences, nor have they asked to review or limit anything I might write.

18 Responses to 2012 Medtronic Diabetes Advocates Forum

  1. Scott,
    What a great opportunity you guys had! While I have never been in your position, I have been given several opportunities to speak for various pharmaceutical companies. The only time I said yes was related to an osteoporosis medication. I said yes for two reasons, first, there was no competitor on the market at the time, and second, I was in a position to educate patients who had already been prescribed the medication. I was teaching patients about the pathophysiology of osteoporosis, various treatment options, and how to use the mediation they were prescribed. I was not doing the prescribing nor was I trying to encourage other HCPs to use the drug.

    As a valuable player in the DOC, consider how your opinion impacts other members. If you look at one device, consider trying others for comparison as you mention. Sometimes feedback I receive as a HCP related to CGM comes from spouses or other family members, not always the user. Is that something that can be provided too? Do you have the time and energy to have new products enter into your lifestyle? Can you develop a pro and con lists based on your assessment of the device(s)?

    Even though you state you are not a reporter, you are a consumer, and your experiences and opinions matter!

  2. George says:

    You have a voice and an audience. I think it would be unethical to pass up this opportunity that many of your readers don’t have to be able to give your opinion on the MySentry.

    Just my two cents.

  3. Kelly Booth says:

    I agree with George, go for it! We know that you will write an honest review of it, so what is unethical about it? Plus, how many other people will have the opportunity to compare the two? Did I already say go for it!

  4. Sara says:

    Hearing from Dr. Kaufman has convinced me I have to figure out a way to combine my diabetes advocacy for my advocacy about Haiti. Such an honor to hear from her!

  5. Judi says:

    I would value your opinion because, like you, I am very loyal to my old(and way out of warranty) Cozmo. Your opinion would be valuable because you like your Cozmo so much. Unlike some who have had MiniMed pumps for years, you come from a place of never using them and liking something else. So, in a sense, you need to be convinced of its merit.

  6. Kelly Harp says:

    I say go for it! Especially if they are letting you try it for free. Would they give you all the components to try? If so it will let you test drive the pump, cgm and Mysentry without any commitment.
    We got the Mysentry for my daughter about a week after it came out and LOVE it. We are all for MM products and love them- never used any others though.
    You are right about the privacy button, it is nice for her number not to be displayed for anyone to see. So we can have a party, I can have it near me and hear the alarms. The freedom it has given her is so worth it. She doesn’t have to have me constantly asking her what her number is.
    We just got a check from our insurance company today and they agreed to pay for it at 100%!!!!

  7. mariana says:

    Good afternoon,

    I am presently doing my dissertation, in the context of the Master’s Degree in Industrial Design at the Faculty of Engineering of Porto – Portugal, in the area of Diabetes Mellitus Type 1.

    My interest in this disease appears when my boyfriend was diagnosed with type 1 diabetes was diagnosed and later also my cousin.

    Thus, arises the interest to do my dissertation on medical devices used in controlling diabetes. The purpose of this dissertation is to perform a new device is noninvasive and allows a greater affection and connection with the diabetic as well as better control of the disease.

    It is essential to the views of type 1 diabetics to understand their needs, preferences and frustrations were carried out two questionnaires, one aimed at adults and adolescents and the other addressed to children (parents can help answer).

    Questionnaire on Medical Devices used in the treatment of Type I Diabetes Mellitus – Directed at Diabetics type 1 (Adolescents and Adults). For the filling, go to: https://docs.google.com/spreadsheet/viewform?formkey=dDR6d0FyeXl3ODFFT0lUcUJVM24xekE6MQ

    Questionnaire on Medical Devices used in the treatment of Type I Diabetes Mellitus – Directed at Diabetics type I (Children). For the filling, go to: https://docs.google.com/spreadsheet/viewform?formkey=dGFBalduZ2RydGEyMkZHWWRFdHFVM0E6MQ

    I found your blog and thought it would be a good way of divulgation. So, I wonder if it could be possible.

    Thank you for your attention.
    Best regards.

  8. Kim says:

    I think you should do what you think is right – you have a good head on your shoulders, Scott, and I know that I and many others have great trust in the fact that you will tell it like it is. I think you should go for it!

  9. Mike Hoskins says:

    Nothing to really add that hasn’t already been mentioned, but you have a level of trust that I don’t believe would be hit by this. You’d have a valuable perspective to offer, especially (as I think my mom mentioned above) as someone who hasn’t used Med-T and would be even more objective. No need to be a “reporter” or anything like that… just writing your opinions based on experience. You are already awesome on that front! The fact that you put this out there and are so open and honest illustrates why you’re good and this wouldn’t be any type of shady.

  10. [...] Scott Johnson writes an overview of the Forum, and also ponders the ethics of borrowing the [...]

  11. Bill Woods says:

    Go Cozmo!!! :-)

    Scott, my buddy. I read your article and I felt if I was in your shoes, I would have written the same thing.

    *** If you are questioning it already. You know what you “should” do. ***

    Best of Luck my friend. Always wishing you the best!

  12. Regarding your mySentry offer. Take it and tell us all about it. Seriously. I want this thing so bad, but they didn’t time the release well. I would have budgeted for it in my flexible spending account, but I also want to know how it works and I want insurance to cover it.

    We don’t want reviews, we want your insight. That is why I am blogging about the Medtronic Minimed Veo (Low Glucose Suspend) pump and Enlite Sensor trial I just started. To share the facts jack, as I see them. I hope to share what I think as a patient and as the mother of a patient who refuses to wear a sensor of any kind aftr watching me harpoon myself with the current Minimed CGM. I’m excited to try it the new Enlite before man, so I can share. I love my Medtronic products, but if someone could make something better for me, I would use it, which is why I own the Dexcom Seven plus, too.

    Anyway, full disclosure and no guilt. Just share what you learn.

    Wendy

  13. Sysy says:

    I love your writing.

    I’m so jealous you got to meet Chuck and I’m so jealous he got to meet you! Someday man, someday :) Anyway, about your question to everyone, I think that you should go for it and feel secure knowing that when you’re transparent this way, it solves all the issues you’re contemplating. You’ve let us know all the details and your opinion matters to us. And if it doesn’t matter to someone, they have the right to choose not to read about it. So by being honest, you make it alright. I don’t use a pump but I’d be interested in your take because you’re one of the bloggers and diabetes advocates that I trust. So by all means, give it a shot :)

  14. shannon says:

    you don’t have to be a reporter. you are a PWD who can give your honest opinion of the trial. that’s all your readers are interested (well, this reader anyway).

    thanks for a thorough wrap-up of the forum, for those of us who couldn’t be there. :)

  15. Tom says:

    Naturally the decision spins about what your conscience will allow you to do within your own moral code. It’d be presumptuous for me to offer advice one way or the other.

    That said, while I understand that your standing in the Diabetes community has afforded you an opportunity that most of us do not have, incumbent with that is an inherent obligation to make the most of the access to information and opportunities that you have. I’d be privileged and humbled to have “an inside track” that would enable me to try new devices and cutting edge treatments. That isn’t so much to satisfy my ego, although that would lurk in the back of my mind. Rather, I’d feel obligated to take every possible opportunity to improve my health not just for my sake, but to make life easier and happier for my family who is sentenced to watch my ordeal. For example, I’m unable to hear my Minimed 723 alrms and only rarely feel it when it vibrates an alarm. This past weekend I started to go into DKA and am convinced that the MySentry, coupled to my pump & CGM could have prevented it. I cannot afford the mySentry but wish I had that or a similar device.

    Thanks for a super blog!
    Tom

  16. Joshoda Nandan Routh says:

    Can any one tell me when “Medtronic Diabetes Advocate Forum – 2013″ conference date ?

    It’s urgent.
    Thank you.
    Joshoda Nandan Routh

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