#DUKPCInsider conference: hopefully the first of many

Yesterday I attended the first ever Diabetes UK Professional Conference (DUKPC) Insider conference, a spin off from this year’s annual 3 day professional conference which is open to only healthcare professionals (HCPs). The Insider was specifically for people with diabetes (PWDs) to attend.

TL;DR
Diabetes UK held an event for people with diabetes (PWDs) to hear some of the presentations held at their 3-day professional conference.
It was great.
I hope it’s the first of many

A bit of backstory

A few years ago no PWDs really attended the DUKPC, then Diabetes UK had the foresight to invite some lucky PWDs/carers who tweeted and blogged lots of information from the conference. This was great, there was such an appetite for the information.
For the following few years 5 PWDs/carers attended the DUKPC as winners of a bloggers competition and they all did a brilliant job of getting information out to us PWDs and carers.
This year, typically the year I was going to enter the bloggers competition for the first time, Diabetes UK decided to hold the Insider event, with the aim of effectively allowing 250 – not 5 – people to attend.
It was a good decision Diabetes UK, bravo.

Even the weather couldn’t stop us

180317, Kev explaining OpenAPS on the trainWith forecasts of a mini-blizzard hitting London I did wonder whether that one snowflake would mean all roads would be closed towards London, but I set off at an eye-blearing-6am, picking up my friend Anna on the way.
Once in London it wasn’t long before the inevitable PWDs-on-the-same-train happened, with Steph capturing me explaining Amy’s #OpenAPS to Anna.

Even the weather didn’t make us Grumpy…well maybe one

I couldn’t miss out the fact the DUKPCInsider gave me the chance to meet Chris, aka GrumpyPumper, for the fist time. I’ve known Chris for around 6 years now and somehow we’ve never found ourselves at the same event, which is remarkable as between us we’ve probably got them all covered.
It was a pleasure to finally meet the man who cheers up twitter when it’s down.

Wow, what a programme

The programme for the event was great and I was particularly pleased to see the calibre of presenters. Us Insiders heard from some of the most brilliant Doctors and Professors, the people at the top of their field.
The opening plenary from Professor Hattersley was outstanding, telling us all about the many types of Diabetes, told to us in a way that could be understood by the likes of me with my one O-level grade C in Art.
I’m not going to go through all the speakers sessions but each and every one was excellent and I felt privileged to be able to listen to them.

I can’t not talk about the tech though

180317, Pratik shout out to WeAreNotWaitingIt’s always a pleasure to listen to Dr Pratik Choudary speak, I love that he understands that achieving 100% time-in-range is an impossible dream for most, that 80% would be fantastic and that even his working pancreas doesn’t stay in range. I love that Pratik let’s his patients know about tricks he reads from PWDs tweets on Twitter.
I found myself nodding along in agreement with all his slides but couldn’t contain my happiness to see the slide on the right.
Later it went one stage further when in Dr Helen Murphy’s session about artificial pancreases she spoke about what the patients are doing and spoke about #WeAreNotWaiting and #OpenAPS again.
It so lovely to hear how much respect clinicians have for patient-led things. Bravo.
After Helen’s talk I went over to thank her and I was bowled over by everything she had to say about #OpenAPS’s closed-loop AP.
In the panel at the end #OpenAPS got another nod, this time from everyone’s favourite doctor on Twitter, Dr Partha Kar, when asked about the future for diabetes.
Three times in one event, I was honestly so surprised, and pleased.

A plea to Diabetes UK

Please, please run this event again.
With the conference being in Liverpool it will give the opportunity for many different people to be able to attend.

A final thank you

To Robin, for your talk about stigma and language, and inevitably one about Park Run which I thoroughly enjoyed. But thank you mainly for your tireless efforts to help bring events like this to fruition.

And finally

Having spoken with Chris Askew, Diabetes UK’s CEO, at the event I know Diabetes UK have ideas on how to further expand knowledge sharing. I’m really pleased to hear they’re looking at this.
I do think there’s scope for having a bloggers competition and the Insider event together and I hope they consider this for next year.

The road to Amy’s DIY closed loop artificial pancreas #OpenAPS

Day 6, nicely in target

TL;DR
I built Amy a closed loop artificial pancreas
She’s been using it for one week so far
It’s great

 
After getting into the world of #WeAreNotWaiting and Nightscout, I followed with great interest the progression of OpenAPS, a do-it-yourself closed loop artificial pancreas. I read the posts by Dana Lewis and Scott Leibrand with awe, wondering whether closed-looping would ever be something Amy might want.

If you’ve not heard about OpenAPS you might want to do a little reading first. In essence a matchbox-sized computer reads CGM data, figures out what temproary basal rate (TBR) could be used to help get levels on target and tells the pump to do the relevant TBR. If you’re worried it’s not safe, think again after reading this.

Back in October 2016 I decided I should gather the necessary kit together and should Amy ever want to close loop I’d be in a position to help. I’d need an old Medtronic pump, an Intel Edison chip and an ‘Explorer’ board. I sourced my first pump from eBay, it was no good, it was dead. The second was better and usable but I sourced a better third one, a 715, which I got from the Netherlands after asking all the right questions and requesting videos of it working.

I let Amy know that I had the kit should she ever be interested; she wasn’t. All the kit sat in a draw patiently waiting in a box adorned with a #WeAreNotWaiting sticker. Oh, the irony.

Last November I went along to a DIY closed-loop artificial pancreas build event hosted by the UK looping commmunity’s Tim Street, a tremendous driving force behind helping others to close the loop themselves, or understand and learn about it, or understand many different things about diabetes, plus he’s written a great guide to closed looping.

I had no intention of building anything but I went for the chat and to see what was happening, but I took my kit pieces with me. I came home with an almost working closed-loop artificial pancreas!

Amy seemed more interested now she could see something working.

Amy wasn’t using CGM at the time but my friend Alasdair let us use his CGM data from his Dexcom account to help me test, test and test the rig I’d built. It was working tremendously well, I watched in awe is it made the temporary basal rate changes which were sent to the pump – containing water and not attached to anyone.

A couple of weeks later my friend Craig gave us a G5 transmitter to help continue testing which I wore, along with the 715 pump pumping water for a few weeks. Thankfully my phone using xDrip+ worked well to collect the Dexcom G5 readings and my CGM trace was illuminating, a ‘normal’ person’s glucose line certainly isn’t flat, especially after eating my nemesis which is clearly bread.

OpenAPS rig Dean and pumpIt still wasn’t the right time for Amy, so I waited, applied no pressure and just hoped one day she’d ask to use it.

That day happened the morning after the Rise of the Machines event when Amy watched the presentation videos of me and then OpenAPS’s founder Dana Lewis, whom I had the great pleasure of introducing to Amy only a couple of days earlier.

Roll on a week and Amy went live on her rig ‘Dean’ (Supernatural reference) which tells ‘Castiel’ (the 715 pump) what to do. It’s been a full-on learning week, with tweaks here and tweaks there.

We started cautiously, setting the target range to 7.0-7.5 mmol, something we’ll drop later when Amy’s feeling more confident. It’s doing very well and every morning is like this:
Day 6, nicely in target

It’s already offering an improvement to less time spent hypo, or rapidly changing BGs, or standard deviation. More importantly Amy is having to make less decisions, or reactive actions. It’s important to remember this is the end of week one with a target set to 7.0-7.5, so it’s easy to see how A1C – if that’s what you’re worried about – can be lowered by dropping the target range.
Distribution, day 8 for 36hrs

Open Loops, Closed Loops and Tim Omer’s Hackabetes Artificial Pancreas Project (HAPP)

It was a turn of good fortune that Tim Omer’s presentation to the London Type 1s group fell on the same day as the Medical Technology Awareness Week Reception at Parliament I attended. I was looking forward to this event, it didn’t disappoint.

But first: That annoying Guardian article

Having created our first xDrip in early January and using it effectively since then I was more than pleased to read that Stephen Black’s xDrip design was at the center of his system. I was intrigued, I needed to learn more and an article about Tim in the Guardian gave me that chance. Unfortunately although Tim’s article from the Guardian in late October gave a great overview of what he was trying to do the journalist neglected to print any of the information Tim gave them about who designed the different parts. I’ll be honest, this annoyed me, it’s lazy journalism and I’m suprised the author, Lord Darzi, who has a medical and scientific vocation, did not list the relevant sources.

A bloody nice bloke

I’d never met Tim before but what came across strongly was that he’s very knowledgeable about everything Type 1 tech, whether it be at Dexcom G4 or G5, artificial pancreases, insulins, many types of bolusing as well as the tech stuff, like Bluetooth, RF and NFC to name but a few. He’s also a very nice chap, more than happy to answer any question to help the person asking, really Paying It Forward to make others’ lives easier. As Paying It Forward is my current voie de vie it’s clear Tim and I would get on well. Then add a love a travel and all round geekiness and it gets even better.

A brief history of time…it’s only three years long

Tim spent quite a while going through the history which led to HAPP, from John Costik, Lane Desborough, Jason Adams, Ben West and all the other Nightscout founders and developers, then onto to talk about Dana and Scott Leibrand being the first to ‘close the loop’ – that’s where the pump is controlled based on inputs from CGM data. He spent a good bit of time crediting those forerunners in enabling him to get where he is now.

Let’s talk about Loops baby

Let’s stop for a moment to talk about about loops.
An ‘open loop’ design takes CGM data and suggests actions, the pump is never touched, or even connected to the system.
A ‘closed loop’ will actually control the pump.
A ‘closed loop’ system is therefore probably what people would see as an actual artificial pancreas, it controls the pump to reduce or increase the level of insulin given. One type of a ‘closed loop’ system is that run by Dana/Scott and follows the OpenAPS method where it constantly puts on TBRs (temporary basal rates) and will potentially stop all basal insulin delivery for a moment of time, or increase the amount of insulin for a moment of time. This use of TBRs is for me an important thing as it’s a safety mechanism, given that it is constantly monitoring, calculating and adjusting. Just imagine what would happen if the system gave a 2 unit ‘correction’ and BGs started coming down rapidly, it couldn’t backtrack. That’s not the case with TBRs, much safer indeed.
I’ve seen the results of Dana’s system, it’s very, very impressive.
And it’s not just Dana: there’s 16 people who are running a ‘closed loop’ OpenAPS system. Amazing eh?
Going back to ‘open loops’, it’s just what we do already right, using Smart Meters or our brains? At the moment us parents and T1s make decisions many times a day about what action to take to amend a glucose level that’s heading out of range. But the problem is that emotion is brought into the loop (sorry – dreadful pun) and we end up over-correcting too often. And we have to think to take a look at the BG or CGM trend and do something. An ‘open loop’ sorts some of that out by using notifications and suggestions and of course you don’t need to accept the suggestion.

HAPPy days

So where is Tim now with HAPP? It’s at the ‘open loop’ stage, where it runs nicely on his mobile phone and sends notifications to his watch which he can choose to act on or not. Although I noticed I’m not sure that everyone realised that Tim had set a couple of TBR adjustments during his demo. At the end of the demo he showed us the results with his own Nightscout page and everyone could see the 0% TBRs he’d put on, which on HAPP had suggested and Tim felt comfortable with.

A HAPPy future

Once Tim has honed his current ‘open loop’ system he will be trying to move it to the ‘closed loop’ stage.
He’s determined, he’s knowledgeable, he’s very resourceful.
I’m sure he will get there and I wish him good luck.
Moreover, I really hope to get to meet him properly one day and have time to talk.

But what about us?

I’m very behind a homemade open loop system for Amy, I’ve got no problem with that, although I can’t imagine it’s anything we’ll look in the coming months. It could monitor Amy and give suggestions as to TBRs to put on and with her knowledge of what else is going on she could choose to action those suggestions or not.
Her choice.
So, no ‘closed loop’ desire for us them.
But if it were me…I’d already have a closed loop system or be working towards it. I’d leap into this technology because after all I’m a computer programmer so I could tailor it.
Amy can’t do that and I won’t mess with her health.

As far as all of us in that room are concerned…. #WeAreNotWaiting

Further information

The Guardian article about Tim’s HAPP
Tim Omer’s HAPP GitHub