For some reason I’ve spoken about this a lot in speeches for more than a year but I haven’t blogged about it. The time has come.
One of my sayings in Let Patients Help is a lesson we learned in graphic arts, and the music industry learned too: “When assets digitize, things change fast.” This is, truly, an extraordinary example.
Some people with diabetes pretty much do as their doctors tell them and the industry tells them – they wait and hope that things will get better. That’s fine with me – I never say that people should be more like me. But when someone wants to take a more active role, I believe society (including medicine) should not stand in the way: let patients help improve healthcare.
Well, for a couple of years there’s been a #WeAreNotWaiting movement among patients with some diseases who can see a way to use their digital information to, perhaps, improve their health even if industry can’t get results.
Here’s an 11 minute introductory video – I won’t say more, I’ll just ask you to click and watch it.
The speaker is @DanaMLewis, who lives with Type 1 diabetes, and has hacked into her CGM (continuous glucose monitor) and her insulin pump and grabbed the data feeds in the devices. Then, using a $35 computer called the Raspberry Pi, she and then-boyfriend @ScottLeibrand (now husband) wrote software to manage her blood sugar better than it’s ever been controlled before.
It works. They call it the Automated Pancreas System, and they donated the code to open source, at OpenAPS.org. And now scores of people are doing it. It’s been in the mass media (Wall Street Journal, and Popular Science! even published a diagram, below), and trust me, you’ll hear more about it.
This is an existential threat to everyone who believes that patients can’t possibly understand all the complex things needed to manage a disease like this … but as you’ll also hear, it’s profoundly liberating to the people who have the problem.
Remember that in 2012 the Institute of Medicine said our healthcare system should be “anchored on patient needs and perspectives.” Seriously: think what that means for these patients’ perspective – the ones who say “We are not waiting. While you guys work on products for someday, our lives are continuously at risk, and we – the few early geeks – are taking matters into our own hands.”
The event was an open source software conference, so some of the language is technical, but you can just skip over that – the main point is all in plain English.
Next up: This week in San Diego, at the Quantified Self Public Health Symposium, six members of our Society for Participatory Medicine saw Dana lead a 45 minute session with eight other users on stage. It was beyond amazing, because everything they said was scientifically rigorous – an irrefutable. Another post with video of that event will come shortly.
If you haven’t heard of this and want to catch up, do some googling, and check these hashtags: #WeAreNotWaiting, #OpenAPS, #NightScout. More in a day or two.