This is something we’ve been asking companies for over many years, but even the most forward-thinking diabetes device companies are still limiting patients to read-only retrospective access to the patient’s own data. That’s a start, but it isn’t enough. We need all device makers to take the next step toward full and open interoperability: participating in open-protocol development of pumps and AP systems. If funding from a major organization like JDRF is what will be needed to prioritize this, great: we’re really excited to see them doing so.
Many of us in the diabetes community have chosen to accept the risk of a flawed device, because of the net risk reduction -and quality of life improvements – that come from being able to DIY closed loop. But that doesn’t mean we’re 100% happy with that.
- We shouldn’t have to bandaid our pumps – literally – with tape.
- We shouldn’t have to buy them second hand.
- We should be able to use in-warranty devices that aren’t physically broken.
In order to use our medical devices in the safest and most effective way possible, we need the ability to remotely and safely control our devices – and understand them – as we see fit. That means the makers of the medical devices we rely on need to openly document the communications protocols their devices use, so that any informed patient, or any company or organization operating on their behalf, can safely interact with the device.
It’s a big deal for JDRF to put resources into helping companies figure out how to do this, and ease liability and regulatory concerns. Thanks to everyone who’s been a vocal advocate in the DIY community; in organizations like JDRF; and individuals advocating at the medical device companies as well. And props to the FDA, who last month released official guidance encouraging device makers to “design their devices with interoperability as an objective” and “clearly specify the relevant functional, performance, and interface characteristics to the user.”
We all have the same goals – to make life better, and safer, for those of us living with type 1 diabetes. I’m excited to see more efforts like this that further align all of our activities toward these goals.
To the diabetes device companies: we’ve long said we are happy to help if you want to figure out how to do this. Hopefully, you already have ideas about how to do this smartly and safely. But if you need help, let us know – we’re happy to help, because #WeAreNotWaiting and neither should you.