Interoperability Awareness.

I’ve been living with Type 1 Diabetes for 23 years.

Like everyone else who was diagnosed with Type 1 around the time I was (1991), there were just a few options. Those options included, thankfully by then, glucose meters that gave us a reading from a drop of blood we provided. We used the data from those meters as a base for our dietary decisions and our insulin dosing. Also, as a basis for the imagined success or failure of our diabetes management.

Today, with little exception, we’re using the same system. The tools are better, probably more accurate, but we’re using the same system. Whether we’re using a continuous glucose monitor, an insulin pump, a Low Glucose Suspend system, or something else, we’re still using the same drop of blood to guide our decision-making process and the decision-making process of the systems we use.

And that’s okay, except it’s not, because we still can’t get what that drop of blood, or that CGM, or that insulin pump, or that LGS system is doing to work all on the same platform, informing the same data sources. That holds us up from sharing our data with our families (I’m familiar with Nightscout—I’m talking about all of our data). It keeps me from informing healthcare professionals on a real-time basis, at regular appointment times and if, God forbid, I wind up in the emergency room unable to speak for myself. It keeps researchers from being able to use my data to inform and support their discoveries. It keeps the diabetes devices that I wear from working efficiently, keeping me from achieving better outcomes with less effort. I’m talking big picture here: Not just “Can my CGM talk to my pump?”. I mean “Can my meter readings and CGM graphs and pump settings and prescription dosage and anything else health-related reside in one space?”.

Let’s face it: We’re now talking about cars that can drive themselves and using drones to deliver packages to our homes. Meanwhile, our diabetes devices are still dependent on years-old technology that is mostly confined within the length, breadth, and depth of the device itself.

If my data is all available via one source, where I control who can see it, but once I make it available, it’s easily accessible? That’s the jackpot in this discussion. And guess what? If that ever happens, I’m still going to want an insulin pump. I’m still going to want a CGM. I’m not going away as a customer.

To talk about the proprietary nature of software that a company has developed just doesn’t hold water anymore. The software that comes with your device doesn’t have a separate line item on the invoice. It’s baked into the price. Protecting “intellectual property rights”, in this case, is a 20th Century complaint for a 21st Century world. And it’s an 18th Century argument when it comes to what is best for the patient. I’ve said it before, and I mean it: Patient trumps Proprietary.

People With Diabetes need and are deserving of 21st Century technology that will not only help us reach better outcomes, but will help everyone who helps us reach better outcomes. Please join me in speaking out for greater awareness, and improved access to our data.
Tomorrow I’ll be attending the U.S. Food and Drug Administration’s Public Workshop – Regulatory Science Considerations for Software Used in Diabetes Management.

This is the message I’m taking with me.

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  • theperfectd  On November 12, 2014 at 10:48 am

    ::CLAPS LOUDLY:: Bravo. This is exactly the message that needs to be heard. This is the most succinct, brilliant explanation I’ve seen to date. I’m so glad that you’ll be attending (as will I, but virtually).

    Liked by 1 person

  • Karen  On November 12, 2014 at 11:32 am

    You will be there in person? If so, thank goodness – we need a strong voice like yours in the room. Like Cristel, I’ll be virtually there too.


    • StephenS  On November 12, 2014 at 11:37 am

      I will be there in person, provided I can get out of bed on time. Others will be there too, including Adam Brown from diaTribe, who will be presenting.


  • Laddie  On November 12, 2014 at 3:19 pm

    This post is timely in that in the last couple of weeks, Diasend has added the ability for US users to download their Dexcom G4 data to its website along with the very recent addition of the Tandem t:slim pump. Currently I download my Animas pump, my Dex G4, and my Freestyle meters to Diasend and for the first time in a long time, all of my data is in one program.

    I previously used a Medtronic Revel pump and as long as I used their sensors, I was able to consolidate all of my data in Carelink. But when I switched to a Dexcom CGM, I lost that ability.

    I think slowly we are seeing everyone except Medtronic becoming more open with their data. I wouldn’t be surprised if soon we see a D-data world where Medtronic stays proprietary with the data from its devices and all other diabetes devices are able to download and consolidate data in programs like Diasend. IMO Medtronic would be making a mistake not to join the movement for releasing its data to the patient in the form that the patient wants it. I guess we’ll just have to wait and see.

    Great post and I’m glad to know that you will be representing me at the FDA’s Public Workshop about diabetes software. (And Christel also!)


  • Mike Hoskins (@MHoskins2179)  On November 12, 2014 at 4:50 pm

    Data is opened by Company A, for the patient and all the world to see how the data is created. What’s stopping Company B from reverse-engineering the product from that data, and creating the exact same product that could even be a bit better? And eventually, Company B’s product takes away market share and value of the original Company A product? #AskingAsADevil’sAdvocate


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