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One of my favorite sayings about digital health is “When assets digitize, things change fast.” The point is that once information (or anything else, even fonts) goes digital it can suddenly be hundreds of times faster to develop new things. In health and care, a special kind of liberation becomes possible: if the person who has the problem can suddenly invent things, what becomes possible?
I’m at my first-ever diabetes convention, the American Diabetes Association’s 76th annual Scientific Sessions. I’ve written before about @DanaMLewis and husband @ScottLeibrand of OpenAPS.org, the open-source Open Artificial Pancreas System project. (Most recent was this on this site “When assets digitize, things change fast”: the #OpenAPS do-it-yourself pancreas and this amazing speech last month on e-patients.net.)
Did you know it’s not unusual for a basically health person with diabetes to die in their sleep? I never heard that until I got to know people in the DOC (diabetes online community). (Amazing what happens when you talk to the person who has the problem, eh?) That’s why I want awareness of what diabetes is, and awareness of this amazing project, to spread way beyond the usual diabetes community.
So early in this interview I ask Dana to briefly explain what the pancreas does, why it does it, and what goes wrong if it doesn’t work, which (I assure you) will lead you to understand why people with this disease might say “WeAreNotWaiting.” (If you don’t know that phrase, google it.)
It’s incredible what these people have done, and word is spreading fast. This is not for everyone – but it’s spreading, as you’ll hear.
If you’re amazed, or find it hard to believe, or anything else, you can leave a comment. (Email subscribers, you’ll need to click the headline to come online and do that.) I want to know, what do you think about this?? Diabetes is a serious disease – it kills! – and it’s incredible that it seems possible to manage the condition around the clock, hands off with this homemade gadget.
And here’s the irony.
Sunday they will be presenting their scientific poster on this, an official presentation at the ADA Scientific Sessions, teaching the tens of thousands of researchers and medical professionals and industry employees.
And you know what? To be allowed in to present, they had to pay $900. Yes, a patient creating value, achieving something that the industry hasn’t, donating it to other patients via open source … and they have to pay to share it with the industry.
I have a feeling some things are going to change. I sure hope!
Interesting discussion on Twitter between them and @CureT1Diabetes (Ellen H Ullman) about IP issues (intellectual property – patents, trademarks, etc):
@CureT1Diabetes: Since it’s open source, are you able to prevent companies from patenting certain features?
@DanaMLewis: with open source, every thing we do is prior art because it’s already in the public domain
@CureT1Diabetes: Interesting. I thought you were instrumental in creating some of this.
@DanaMLewis: Yup. It’s our prior art.
@CureT1Diabetes: Thanks for explaining it that way. And for your amazing work!
So many thoughts, where to start? First I should note that I don’t even have words to fully express how I feel listening to people I respect and flat-out love making the world of healthcare – and patient empowerment – a better place. Next, this is such an extraordinarily important breakthrough. I am not at all surprised that Dana and Scott discovered and developed this, nor am I surprised that you, Dave, are helping people realize how important this is.
You bring heart and soul to it all, Meredith, and you hold up a mirror so we see our impact more clearly. That’s how things spiral upward. Bless you.
Is there a way we can donate to help with the $900 presentation fee?
I will ask!