I have an idea to make living with diabetes better for us all and I'm tired of waiting. Help me do it. NOW.

Here's the thing. Many times, every day, I, an unqualified lay-person with extremely limited information, have to make life-or-death calculations that my body should be making automatically. I have to figure out the right ratios - of food, exercise (type, intensity and length), insulin bolus (dosage and timing), basal rates and stress levels - that will maintain my glucose level within a range that will keep me out of the emergency room.

That is a ridiculous expectation. (If you've heard enough and want to help, go to this link and vote thumbs up.)

When I get it right, it's luck. When I get it wrong, it's luck. How do I know that? Because there are just too many variables for me - or anyone - to get it right as often as I need to. And the odds are decreased because I am not a doctor. Or a nurse educator. Or a statistician. Or a researcher. Or a supercomputer. Or an islet cell.

I don't want you to think I'm just complaining. I know there's lots of research going on to cure diabetes. I support it. There is tons of technology to track my blood sugar and my other data, and titrate my insulin. I use it all. There are great hospitals and clinics with endos and educators to advise me. I see them. But it's not enough. The cure is not soon enough. The data is not useful enough. The experts are not available enough.

I have to make these calls every day. Every meal. Every workout. I have to decide what to do NOW. All these resources and data, yet I can't figure out what to do NOW so I don't feel like crap later. I know, I'm still complaining. But I'm getting to a point.

The thing is this. It's not just me. It's also you. Or your kid. Or your mom. And millions of others making bad decisions every day. Alone. Alone. This is the key. We're all making these decisions alone. Why not help each other? Not advise each other; we're not doctors. But why not share our data, compile it all together? Use massive amounts of data to help us make these decisions.

Why can't we have an app that lets us put information in and, in exchange, lets us take information out after it has been synthesized with everyone else's data. With the weight of all this data, the app could help us with the decisions. Not with graphs and numbers and charts. It would simply say: "Among people like you, in similar situations in the past, they took 10.6 units of insulin and the result was excellent." Imagine it. Knowing that on thousands of occasions when all hundreds of men like you (age 25-34, weighing 180#), each ate a Big Mac and Small Fries for lunch and pumped 10 units of Novalog insulin, their blood sugar two hours later was up 20% on average. Info like this combined with your own could help you to decide to take 9 units, rather than 10. Then you'd upload your data and others would benefit from your data and results. The circle of life.

To make a long story short, I'm hoping to go to the SXSW interactive conference in Ausin, TX, next year to present this idea and recruit experts (and money) to help make it happen. In order to get a speaking slot, I need to get a TON of online votes before August 27. So, if you like my idea, go to this link and read more about it. If you still like it, vote thumbs up. If you really want to see it happen, tell all your friends to go vote too. Tweet it. Post it on Facebook.

I think we can do this, and fast. Thanks for listening. And thanks for your vote.

Craig

Views: 19

Tags: CGM, SXSW, app, tracking

Comment by Kristin on August 12, 2010 at 12:44am
You got my vote! Good luck :)
Comment by Craig on August 12, 2010 at 8:05am
Three words in this sue-happy society: peer-to-peer.
Comment by Crystal on August 12, 2010 at 11:52am
The biggest issue with this I see is where you say...
Why can't we have an app that lets us put information in and,...... the app could help us with the decisions. .....would simply say: ".... took 10.6 units of insulin and the result was excellent."......

It's because we all react differently to different things.It is by no means an exact science.
Comment by Craig on August 12, 2010 at 12:07pm
It's true. And there is actually another part of the idea that I should have included which is the idea that you could also have the app tote up all of your own results and give you a recommendation based only on your own data: "In similar situations in the past, you took 10.6 units of insulin and the result was excellent." On the one hand, there will be less data; on the other, it's all yours.

The key point is that whatever the source of the data, there is no system that synthesizes the data from the past and presents it to you as ACTIONABLE OPTIONS. Few of us really know what to do with all the graphs we can get. This is a decision support tool.

Does that seem better?
Comment by Bernard on August 12, 2010 at 7:27pm
Interesting idea. You'd have to register and make sure system knew insulin to carb ratios, insulin on board and other stuff. I've a feeling that as the software gathered more information it might become more accurate. It certainly feels like that should be possible. Biggest issue to making the data gathering/submission as trivial as possible.

Craig, I'll be interested to learn more about this. I've been trying to get device makers to think about standardizing data capture so people can do interesting analysis. Your idea would be one example of a good way to look at large amounts of aggregate data over time. For some reason, this sounds like a data crunching exercise that Google might be interested in. Trying getting hold of someone in Google Health - wish I had a name for you.
Comment by Craig on June 5, 2012 at 12:06pm

UPDATE: SXSW wasn't interested in this idea, but I'm still hoping someone does it.

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