Rise of the Machines – Technology and “patient-driven” innovation in the treatment of diabetes #T1DRoM

Rise of the Machines – Technology and “patient-driven” innovation in the treatment #T1DRoM
Rise of the Machines – Technology and “patient-driven” innovation in the treatment #T1DRoM

On Saturday, if you didn’t know already, we ran a first for the UK. A day’s conference focusing on Diabetes Technology, and majoring on “Patient Innovation”, or rather, “Innovation by those affected by T1D”. The Twitter word-cloud generated is shown below.

This was a day that brought together the medical technology manufacturers, JDRF and Diabetes UK, and of course those of us in the We Are Not Waiting community that have been building and using our own pancreas systems. It stemmed from a visit that Partha Kar made to a US conference and was enabled by TechUK who provided us the conference space without charge.

On the day, around 140 people turned up, all waiting to hear the latest and find out more. The mix of those present was split roughly 17% NHS members, 11% Not-for-Profits, 13% Medtech and 59% individuals, although a poll of hands on the day suggested that many of those present were also affected by Diabetes, so this is perhaps not representative.

In addition, throughout the day, there were between 20 and 50 watchers of the online stream, with people watching from around the globe.

Since then, we’ve hit more than 500 watchers of the WeAreNotWaiting video, at time of writing.

The day was broken into three sessions:

  • Mountains into Molehills: How diabetes devices are revolutionising glucose control
  • Challenges in tech research and what charities are doing to overcome them
  • Left to your own devices: How patients got impatient, followed by a panel

Rather than go into too much detail about each of these sessions, I’ve provided links below to the videos that we took of each of the sessions. Apologies about the sound quality – there is an unfortunate intermittent buzzing on the first. As we edit them to make improvements, these will be updated.

Mountains into Molehills: How diabetes devices are revolutionising glucose control

The first session saw Medtronic, Abbott, Dexcom and Roche present and talk about their products and what they are doing, and then face the audience who presented some challenging questions.

Possibly the highlight of this session was the Roche spokesperson restating Roche’s commitment to the Open Protocols initiative from the JDRF.

Whilst the speakers obviously can’t go into anything that’s still confidential, it was good, and probably brave, to have this group represented at an event that was focused on what patients were doing with their technology and how it is being remoulded to better fit what those with and looking after the condition want and need. The other contentious point that was raised was about patient safety. Sometimes “patient safety” is used as a context for not doing things. Most often it’s related to regulatory pressures. Either way, it’s quite a good way to annoy a fair few audience members.

There were some very tricky questions about “user-centricity” that made it very clear that those in the room felt that this wasn’t really at the heart of a lot of the design, and of course, the elephant that continues to remain, cost.

Challenges in tech research and what charities are doing to overcome them

The JDRF and Diabetes UK directors of Research in the UK both sat on a panel, along with leading academics looking at artificial pancreas technology and its use. One thing I learned that I hadn’t realised was that Diabetes UK funds artificial pancreas tech alongside the JDRF.

One thing to come out of the panel was that panellists believed that the NHS doesn’t see diabetes tech in the same way as drugs. One mentioned that were the Libre a drug, it would be approved and prescribed without a glance, especially given the improvements in outcome. Further discussion covered access to clinical trials and how cancer research has changed its approach. There were also some challenging questions from the audience.

You can enjoy all of that in the below video.

Left to your own devices: How patients got impatient

After lunch, the #WeAreNotWaiting sessions were underway, with Kev Winchcombe, Dana Lewis flown in for the event, Gem Pickford-Waugh, Alasdair Mclay, Matthew Guy and me, Tim Street, all talking about different aspects of why we are not waiting and what we are doing about it, with perhaps the highlight being when Dana talked about using OpenAPS and Fiasp and not having to bolus for the past six months. Similar to what I experienced here.

This was followed by a panel Q&A which included Annie Cooper, of NHS Digital. Rather than go into detail, the video is below.

And then the party moved to the pub. And stayed there till closing time.

What are the takeaways?

It was clear that healthcare professionals present found themselves in an awkward position. They wanted to go away and talk to their patients about this technology and the amazing things that it can do. As a starter for healthcare professionals, you can always check out this post, but recommending the WeAreNotWaiting tech may not be that easy.

Arranging “PWD peer support sessions” at your local clinic where there are people using the tech with those who don’t is a perfectly reasonable approach though, and this may be a way to introduce it to those people you’d like to, without directly recommending it.

What would be great of the back of this and the interest it engendered, would be to include someone from the community at the Diabetes UK Professional Conference to talk about DIY Artificial Pancreas technology. Given the current availability of commercial products in the UK and the likely requirements for their uptake, this will remain the most common form of closed loop in operation.

The news that the Roche Combo is now available for use with AndroidAPS also caused a noticeable stir amongst the audience. Given the reasonably large numbers of them in circulation in the UK & Europe, I’d expect to see more build parties for Android APS opening up in the next six months.

In addition, the capabilities we’ve been able to drive into the platform by taking advantage of new insulins such as Fiasp also raise questions about how we can access new products that cost the same as existing ones in healthcare systems that make it as hard as possible. There are likely to be two further insulins that appear in the UK with faster actions in the next 18 months. I sincerely hope that this time, formularies recognise that faster insulin at the same price has a significant quality of life benefit at no extra cost and sign off much more quickly on making it available.

But by far the biggest takeaway for me was the inspiration clear amongst so many people. The realisation that maybe there are other approaches that can be taken to treating this condition. Whilst the audience was one that was already looking, many left at the end talking about trying to do this themselves. It was great to have the opportunity to open this up in this way.

Once again, thanks go to all the manufacturers, whose donations allowed lunch to be paid for, the JDRF and Diabetes UK and their guests for participating, TechUK for hosting, Ben Moody and Partha Kar for organisation and of course all the WeAreNotWaiting community for participating, especially Dana for her trip from Seattle for this.

Whilst it probably raised as many questions as it answered, the hope and inspiration on the faces of those who attended as they left told the best story of day.

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