@DanaMLewis has built her very own DIY artificial pancreas – something that best fits her own needs – to optimise the management of her own Type 1 diabetes. It’s a mix-up of her continuous glucose monitor, and her insulin pump – and Dana’s blood sugar is now being managed better than ever before.
The e-patientsnet blog – where I found out about this – underlines how liberating it has been for Dana and other people like her, who want to take full control of their chronic condition.
Dana was clear that she has tested her system out, and especially that she has designed it with failure in mind. Individual experiments with ‘off label’ use of medical devices are not regulated by the FDA, so she’s not breaking any laws or regulations.
The code Dana and her partner wrote has been donated to open source, at OpenAPS.org. So now 59 people are using it to optimise their diabetes, including a father with his one-year old baby.
Dana mentioned that the industry may be getting to something like this, for people who are less tech-savvy. Perhaps in 2017.
Why so slow?
She also suggested that the information she and other users of the DIY systems are collecting could help manufacturers understand what works well, and why.
I’m not holding my breath for that either!
But this is another step towards true patient empowerment – and not like the regulated PPI described here.
An eleven-minute video from Dana is here.