I had the chance to talk about DIYPS and OpenAPS during a demo session in DC last week. (Thank you to Gary from Quantified Self and Marty from the National Academy of Sciences for making this possible!)
I walked away with several insights:
- Many people don’t know about diabetes; fewer have a realization of current diabetes tech. In several cases as I was describing the closed loop artificial pancreas, people stopped me and were wowed – but not by the closed loop. They were impressed by the CGM.
- Others think that this type of technology is already out on the market.
So, I believe we have a long way to go in communicating and advocating for this type of technology. We know it’s behind where it should be – and we want it to catch up. That’s a big part of the OpenAPS goals to help the FDA, device companies, and everyone involved move a little faster than they might otherwise, because #WeAreNotWaiting.
But here’s the other question I was often asked: “How many people have you given this to?”
I frequently embarked on an explanation of how we can’t “give” away #DIYPS or the OpenAPS implementation – in fact, we can’t and won’t give away the code, either. Some of that is because the FDA says no – and some of it is common sense and principles that both Scott and I hold.
Here’s why I think it is so important to keep the DIY in DIYPS and each OpenAPS implementation that is in progress:
- You need to have a deep understanding of the system before even considering using it on yourself. You need to know what it’s trying to do in all situations, including the fringe cases (the “this is unlikely to happen but if it does…”), so that you know when it’s working – and when it’s not – whether it’s 3pm in the afternoon at work, or 3am and you wake up and find something is not right and the system is not working.
- You need to go step by step and test and ensure at each stage that it is working as expected – both in a “this is what it should be doing” and “it is giving out the correct amount of insulin”. Remember, insulin is a lethal drug. It’s also a lifesaving drug. It’s important to remember both of these things and balance the risks accordingly.
From the conversations I’ve had with people interested in learning more or getting a DIYPS-type system for themselves, they fall into two categories:
- “How can I buy it from you?”
- “What do I need to do to make one?”
Given my above reasoning, the second question is my favorite. The first one scares me, if someone does not then switch to the #2 question. Many people do go from #1 to #2, which is great.
DIYPS, for me, and OpenAPS implementations, for others, are works in progress. They’re not perfect. They’re better than what’s out there (like sleeping through alarms when you’re low at night), but they also have big risks. And it’s important to know, and respect these risks, and understand the limitations of the system, before being able to take advantage of this type of system – and to build the system with appropriate safeguards. (This is one of the reason we have OpenAPS, for example, designed to accept multiple failure points – like walking out of range, loss of connectivity, etc.)
The ability to buy a “black box” type system where you don’t know exactly how it works, but you trust that it works? That will be coming from the major device manufacturers in several years – hopefully sooner rather than later, and that’s something that OpenAPS will hopefully help make happen more quickly.
So to answer the #2 question, what do you need to make a DIYPS or OpenAPS of your own?
I’ll answer the technical aspects of this question in another post, but the first thing I always say is: “The willingness to build and test and test and test some more before ever considering using it on yourself.”