Today, for the first time in the UK, we ran a DIY Artificial Pancreas “Build Party”.
What’s one of those? An occasion where a bunch of people get together to help each other build “artificial pancreas systems”.
On this occasion we had 25 people building OpenAPS, Loop and AndroidAPS. We walked away with five OpenAPS systems, two AndroidAPS and one Loop.
But the event also taught me a lot.
Ordinary people working together can solve a lot of problems, and collectively, together, we get a lot more done…
But equally, DIY isn’t a straightforward solution. While a few of us are doing this, we shouldn’t forget that we really are a few. And although it might guide wider participation, and potentially better solutions from industry, it can be tough to get going on using this stuff yourself.
What I Iearned was that it doesn’t really matter which system you choose to use, unless you are familiar with the technical language in which they are all built, the reality is that they all have challenges. Whether it’s navigating around the Unix structure in which OpenAPS resides, or reimagining the maze that MacOS, iOS and xCode or Android Studio provide you to build Loop or AndroidAPS, none of them can really be called “Simple” or “Easy”. Having a level of technical skill and a background in these technologies makes using them infinitely easier.
That’s not to say you can’t do it. That we saw five people walk away with OpenAPS systems built, all of whom have spent varying amounts of time trying to get them going (one of which has been months), one person for whom this kind of interaction with a computer was by far not their usual experience build Loop and two people work around the challenges that regularly updated software creates build themselves open loops with AndroidAPS is a testament not only to them, but also to the great documentation that is written and updated by the community, to the methods that have been put in place to make it easier to do the work yourself and to the endless enthusiasm and questioning how it can be made better of all those involved in the community just making it better.
No, it’s not easy. But it’s not impossible. So according to the quote, all that leaves is the improbable. And maybe improbable is a lot better odds than most of us like to think. When you apply the three rules of the day:
Read the manual
If you don’t understand, ask!
Help one another
It’s no surprise that we eventually get there.
Watching the pleasure as people realise the loop is looping, or that the app is running on their phone, and receiving glucose data from the cloud is immeasurable. The excitement of knowing that sleeping is going to become easier and that, from this point on, they are much less likely to be high or low… Realising they’ve done it and that they’ve managed to change their lives. It’s incredibly satisfying to see these things accomplished and to know that you’ve helped people to do it themselves.
But you also get the benefit of bringing together people as a group that don’t normally speak. With potential results that may well end up benefiting the whole Type 1 community. But that’s for another day.
So here’s to more DIY build parties and here’s to more people getting involved in the wearenotwaiting movement, and thanks to everyone that has put the work in to get these systems to where they are today that enabled the people in the room to build what they wanted to.
It doesn’t matter whether you think you can, the reality is that (with a little prodding to point you in the right direction), you can. There is a whole community of people out there to help, so don’t think anything other of yourself than I can do this. Because you can!
Tim, that’s fantastic that you were able to organise that. It looks like it was a great event. I can speak from experience that it can be hard and frustrating to set up an APS system on your own if you’re not technically trained.
I only recently found your blog but I was inspired by your post “How do I loop?” to give AndroidAPS a try. I use Freestyle Libre sensors and have Omnipod pumps, so I couldn’t close the loop, but I thought it would be fun to try. I reckon it took me about 20 hours of sitting at the computer to get it all to work and there was much gnashing of teeth and pulling of hair. Much of what I did I don’t really understand but I just followed the instructions on the AndroidAPS wiki (much kudos to the authors of that). In places where I got stuck, I was sometimes able to figure it out with much reading and google searches, other times there were very helpful people on the AndroidAPS Facebook group.
I got there in the end and have been open looping for a couple of weeks now. It has been far better than I could have imagined. My time in target and estimated HbA1c have been improving day by day. It can be a pain doing open loop, making multiple basal rate changes every day. But most of all, it feels like a great weight has been lifted off my shoulders (after 28 years struggling with T1D). It’s like someone has said: “Don’t you worry about all that now. I’ll take it from here. You just press the buttons.”
So have you thought about running more build parties? If you could come up here to Suffolk for a day, I’m sure you’d get a few takers.
Anyway, thanks for the inspiration.
Hi Dan – How does your loop work with libre and omnipod? Do you just scan regularly and manually enter into your pod what the APS algorithm suggests?
Yes, exactly. So you only ever get a suggestion when you scan. You don’t get beeps at random times telling you to make an adjustment (such as the middle of the night).
Hi Dan,
Its excellent that through your ‘Build Party’ the APS community is growing in the UK and building more successful users that can inspire and help others. If or when I get mine going I certainly would like to give back in the same way.
I have a 640G and aim to combine this with a Libre sensor and a Raspberry Pi 0 or 3 W and a 900MHz Explorer Hat with Screen once this is available. Is that a workable combination?
Hi Philip, the 640G is not a loopable pump as the communication protocols remain undeciphered. Work is being undertaken to try and address this, but as it stands, that combination won’t work.
Hi Tim, i have been trying to build AndroidAPS from MilosKosak GitHub setup.
Is that the variant which those amongst you chose to use for android?
I have an old combo and was surprised to find it is now loopable, so jumped in, but have some problems where the documentation doesnt quite match build options etc.
Currently using a 640G, so interested in developments on that front.
Thoughts appreciated if you have chance… John
Hi John, the best place to get support is in the Gitter channels and on the Facebook group for Android APS. There are plenty of people willing to jump in and help!
Hi
I have just started to look into using an APS after 17 years of pumping and 4 years of CGM . I am concerned though about building and supporting this myself as I have absolutely no knowledge of computer speak and basic understanding of using apps , am I unrealistic that I can do this . What support is out there to help as I don’t want to give up on a chance I have been waiting for so long !
When and where are you having another DIY pancreas build party ? My pump runs out in April and I need to choose my options way before this , I need help to think through my next steps , can anyone help me ?
Hi Sarah-Louise, if you want to speak to like-minded people, many of whom don’t have deep technical knowledge, but share griit and determination, come and join Looped and Looped-UK groups on Facebook, where you can find those looping and those thinking about looping.
Hi thank you so much for your response . I don’t have any social media links so don’t have a Facebook account and really don’t want one . Can I contact people by email as an alternative?
I look forward to connecting with like minded people who could support my start .
Hi
I want to have a chance to live a normal life again and consider building an APS after 17years pumping and 3 years with a CGM dexcom . However my computer speak and technical knowledge is virtually zero. Am I unrealistic about being are to build and run my own system , what help is out there , are you having another DIY build party , where and when ?
Would love to hear from anyone who could help me get started . Have looked into many of your articles and think the AAPS is probably the one to go for , I have an insight pump and a dexcom G4 can I link these with AAPS and how do I do this . All support and help gratefully received
Hi Sarah-Louise, if you want to speak to like-minded people, many of whom don’t have deep technical knowledge, but share grit and determination, come and join Looped and Looped-UK groups on Facebook, where you can find those looping and those thinking about looping.