#Wearenotwaiting - the parents who hacked diabetes
How amateurs built an artificial pancreas
A few weeks ago I heard about a revolution in the treatment of Type 1 diabetes which promised to transform the lives of children with the condition. A Cambridge academic told me his teenage son had been on a trial of a system which effectively automated the process of giving him the insulin he needed.
It involved a wearable sensor constantly monitoring his blood sugar level and sending instructions to an insulin pump, with a smartphone app giving him control over the whole process. What a great healthtech story, I thought.
But just as I was getting down to some further research, the news broke on the BBC and in a number of newspapers that the NHS was launching the first nationwide trial of this technology, which it described as an artificial pancreas. Curses, I thought as I read my former colleague Fergus Walsh’s excellent piece, I’ve missed the scoop.
But then, as I dug a little further, I came across an even better story - groups of techie parents have been building their own crude but effective versions of this technology for years.
My eyes were opened when I tried to tell my cousin Andrew about the artificial pancreas. His 16 year old daughter Bia was diagnosed with Type 1 diabetes ten years ago. He’s chronicled on Facebook the constant worry of having a child with this dangerous condition, waking up in the middle of the night to check their blood sugar levels and make sure they’re neither too high or too low.
Andrew told me about the various groups where parents swap tips on coping with T1 diabetes - and explained that the kind of technology described in the news stories about the artificial pancreas had been discussed on these forums for years. And not just discussed but put into practice - impatient with the slow progress in offering this technology to their children, parents had rallied around a hashtag #wearenotwaiting and just got on with it.
He told me I needed to speak to his friend Kev, one of the pioneer parents behind this movement.
In 2010 Kevin Winchcombe’s daughter Amy was diagnosed with diabetes as she turned 10, and the family had to get to grips with a frightening new world. “I wouldn't say I'm an anxious person.” he told me, “but you develop an anxiety around ‘is my child going to wake up in the morning?’”
Amy had to start using two insulin pens (injection devices) - one every night, the other every time she had a meal. Beyond the worry and inconvenience, that had an impact on her attitude to food.“Unfortunately for Amy, she was and still is needle phobic,” Kevin explains. “She made choices to not eat because she didn't want to inject.”
A computer programmer by trade, he started reading up about technology that could help - “as a dad, you try to fix things” - and soon started contributing to parent groups on Facebook and elsewhere. In 2013 Amy got her first insulin pump, a device that she could wear and program to deliver the correct dose at the press of a few buttons.
But Amy, with her needlephobia, still needed to keep pricking her finger to test her blood glucose levels. There was a new wearable device called the Dexcom which provided constant glucose monitoring but at that stage regulators had not approved it for use by children as an integrated system with an insulin pump - it was 2014 before that was allowed.
That spurred Kevin on, aware that as Amy was entering her teens, they needed to find a way of allowing her a little more freedom. How could they let her go to town or the cinema with her friends, knowing that she might have a hypo and friends wouldn’t know what to do?
Having finally got hold of a Dexcom monitor, he decided to make its data available to Amy. So he built something for her:
“Because it was just a radio frequency that just flings the data out there, we had this other device that she could keep in her pocket in a little box. And then that device bluetoothed to her phone. That was the element of her being able to see on her phone what her glucose readings were.”
The next step was to make the data available online so that it could be seen on any smartphone or smartwatch. “I became aware of this thing called CGM (continuous glucose monitoring) in the cloud.”
A system called Nightscout was developed by the hacker community to make glucose readings from the Dexcom available in the cloud. Built on open source principles it is still available today and works with a wide range of glucose monitors. Meanwhile, another open source project Android APS allowed Kevin to monitor Amy’s condition on an Android smartphone or smartwatch: “So whatever device I had, as long as you had internet connectivity, then I could get that information.”
One device he used was the Pebble, a very early smartwatch. As Amy spread her wings, her parents now had reassurance that they would get an alert if her glucose readings hit dangerous levels.
The final step was to use the data from the glucose monitor to automate the dosage from the insulin pump. That was pioneered by an American couple Dana and Scott Lewis who built what was called a closed loop system using a Dexcom, a Raspberry Pi computer and a battery. Even way back in 2016 Dana Lewis, who herself has Type 1 diabetes, was describing their system as an artificial pancreas.
The system was refined and slimmed down and by 2018 Amy was using a Dexcom and an insulin pump, with the communications between them now controlled by her smartphone running AndroidAPS.
Kevin Winchcombe has become something of an evangelist for the work done on an artificial pancreas by this parent hacker community, blogging and speaking at conferences. He wanted to reach a key audience - healthcare workers - and by the time Covid brought a halt to his lectures he reckons his work had paid off:
“The healthcare professionals had heard about Nightscout, they'd heard about looping, they knew what it was and they knew what people were doing. My aim was that when one of their patients in clinic said, ‘Oh, I'm thinking about doing this’ it wouldn't be the first time these healthcare professionals had ever heard of it.”
Now the NHS looks set to offer an artificial pancreas to thousands of people with Type 1 diabetes. Kevin has nothing but praise for the system that has been chosen and the brilliant Cambridge mathematician Roman Hovorka who built it.
He’s also rather modest about the efforts of the hacker community which achieved so much: “Basically, just the right people came together at the right time. And then they decided that they should really tell other people about it.” But the one thing they were not prepared to do was wait until the doctors or the government or the regulators were ready to give them the technology they needed.
As for Amy, she is now a medical student working hard for her exams - and still needlephobic. But, with her artificial pancreas, that does not present too much of a problem.
In writing this piece, I found this diabetes tech dictionary compiled by members of the hacker community invaluable. (Though I bet the experts will still spot a few errors!)
Thanks for writing this Rory, you've captured everything very well. Was thoroughly lovely chatting with you about this topic which is very dear to my heart.
Although, errors in my diabetes tech dictionary, not a chance, haha.
Great piece Rory, we've been looping with my son since 2019 partly thanks to Kev as I'd seen him talking about it in various Facebook groups. It's made a massive difference for both him and us as parents and to see these systems moving into the commercial space and becoming mainstream is great.