Tim Omer has had Type 1 diabetes for about 20 years. If his name is familiar, it might be because we included a story about his South East Asia trip in an issue of this magazine from April 2015. Now we’re catching up with him again in an interview by Sue Marshall.
Professionally, Omer came from a technology background but say, “In that area I have always been involved in interface between technology and people, not just in the field of technology alone. I can now use my skill sets within the diabetes arena.”
Already interested because of his own diabetes and his knowledge of technology development, Omer got involved by talking to people, finding out what was out there, and what people thought was missing. “It’s important to note,” he says, “that the start point was not to create an artificial pancreas, at least not for me. Initially the intent was much more modest. I’ve been surprised at how much the community has achieved, the amount of people involved, and impetus to move it forward.”
At the moment Omer is part of an online community of ‘citizen hackers’, whom he says are, “normal people creating our own technology solutions.” He was inspired by the people behind the #WeAreNotWaiting movement which has been ‘powered’ (if you like) by the frustration of diabetics tired of waiting for technical solutions to their problems. “The reality,” says Omer, “was that the solutions were there but access was limited and costly. Some patients do have access to good technology, like insulin pumps and CGM, but often the devices are limited. They may only last for six or seven days, or the data being generated is limited by only being visible on the device’s own reader. Various insulin pumps and CGMs do not talk to each other, but that is imposed by the manufacturers, it’s not that the equipment can’t be made to do it. Limitation in the manufacturers design, not the technology itself, that restricts people’s choices and access to their own data.”
In the main, we’re all used to accepting the situation regarding access to technology and how that technology works. Clearly manufacturers are putting in the time and money for research and development, and these solutions cost money to buy and use. But diagnoses of diabetes are on the rise, and within that growing group there are people who can keep up with how the technology works and can see that they can get involved and make the technology work for them in ways that are not presently ‘allowed’ by the manufacturers.
Says Omer, “The technology is good, but how we are using it is bad — we want to use it better. As it stands the devices commonly CGMs and Insulin Pumps do not give us easy access to our real-time data and downloading it is a hassle. You may be able to see 24 hours of results on a CGM receiver but you can’t see beyond that. You have to get to a computer to download it, to see it fully, and then be able to properly consider making changes to your medication, if needed. Also what help is seeing what has happened in the past? My diabetes is real-time, therefore I need real-time feedback on how to manage it.”
The community movement #WeAreNotWaiting started on social media in the US a couple of years ago with one of the first community projects known as NightScout (read more in the Read More section at the end of the article). The main participants were initially parents of children with diabetes who wanted to know their kids were safe in the night (hence ‘night scout’). One participant discovered that they could connect a CGM receiver to a Smartphone making all the readings viewable on the phone’s screen. Omer explains, “They found a hack to get real-time access to the data from CGM receiver onto a mobile phone which meant that they now had the data they wanted on the device they wanted it on.”
As it happens the newer CGM models do now work on smartphones, a solution that has been in development for a while. Critics of hacking point out that monies best put into developing the products is being diverted into making sure the devices can’t be hacked; the manufacturers do not want to be held liable for anything untoward that might happen to patients using their technological solutions. So it is understandable that the manufacturers want to be in charge of the products they manufacture.
Says Omer, “This is about patient control, where they can innovate based on their own requirements. The patient decides what to do with their data. We’ve been able to send data to a smart watch, taking my real-time data to a location I can review in real-time. I am using the technology I already have better and not being dictated too by the device manufactures and restricted to their devices for reviewing my data. The movement is not a business or company, its people with a shared interest in using our Diabetes technology and data better and sharing this with others.”
Hacking is a very broad term, often with extremely negative connotations. The main aspect of the hacking being done to access data on a diabetes device uses off-the-shelf hobby components. “As you can see in the pictures, I’ve rigged an amended CGM receiver inside a Tic Tac box that listens out for the readings being broadcasted from my CGM Transmitter” says Omer, this is then paired with a mobile phone app that has code developed by the community. These apps can also track other data about the patient, for example insulin treatments, food, insulin sensitivity, etc. With all this data, we can now start to do interesting things like predict high and low blood glucoses and also how to prevent them with suggestions on adjustments to your insulin pump. Now we are using our existing medical devices and data in a better way, this is achieved with free Open Source code developed by the community and cheap electronics like the xDrip system in my Tic Tac box. The Tic Tac box illustrates that although the stuff looks highly technical, it’s not really. It’s amusing that it fits so well in a Tic Tac box, and it keeps the cost down.”
Frustration has led to this work and subsequent innovation, and currently those involved in the community are continuing to share. One of the primary drivers for the community is that there is stuff that can be useful to their control but they’re not currently being allowed access, and then there’s the matter of cost. CGM solutions have always been costly, due to the fact that it’s sophisticated equipment. With this ‘workaround’, you can get by without buying the full system, but you do need the sensor and a transmitter.
Omer says, “The community is about sharing ideas and freeing our devices and data — we want different devices working together. But the devices need to be our choice, not dictated to us by the suppliers. The idea of different devices talking to each other is rather limited in the diabetes arena at present, and presumably in the medical arena in general. But the community itself is not restricted by the limitations that might be part of normal business for the suppliers.”
But is it safe? Omer’s clear about this, “It’s not a million miles away from doing a blood test and injecting yourself, but it is more sophisticated. It should make each decision less of a risk as it’s based on more data, not just on one blood test result. If I do this, it’s my choice. If it’s dangerous, it’s my decision. The companies whose devices we are all using do not give their permission, support or any compliance to what we are doing, but likewise they do not have responsibility for it. This is down to me, it’s my data, it’s my life, and my life choices. I feel safer now I have the technology I’ve created, but it’s not a cure, it’s an improvement. All the data, if used correctly and parceled up in away I can understand easily, can help me make better decisions. Let’s face it, all diabetics are doing this every time they stop to calculate what dose to give themselves with an insulin pen or using the bolus option on the insulin pump. This is just another way of using what’s to hand in terms of technology and technology can do this a lot more often and more accurately then I can.”
Technology is moving on, it is getting better, but it is often expensive, limited and beyond the reach of many. Diabetes is with me for life and I need to understand and manage it the best I can, reducing the cost of the diabetes technology, using the data in better ways to help me make informed decisions before problems happen allows me to better manage my condition. This reduces pressure on me by having a system handle the constant calculations and review of my data and arguable helping the NHS as I am a more empowered and independent in the management of my condition.”
Omer is open about what he’s doing and how he’s doing it, and also about sharing the knowledge that he has. Are there really ‘hacking parties’ going on? “No. I have made something for me and it’s my responsibility. I can’t make one for you. I can share my knowledge, but I will not give you a device.
This Tic Tac technology is known as xDrip by the community. There are xDrip parties where one or two people teach others in the room what to do to make their own device. They do not do it for you, but if you understand it, you can do it for yourself. This is the community sharing innovation and empowering others.”
Looking to the future Omer is pretty convinced that this will continue: “As a patient with diabetes, I’m still keen to keep pushing this forward. Technology if used correctly can improve our management of Diabetes, but we need to stop overwhelming patients with data and start making that data work for them by giving them informed and actionable information. I suspect that, as we share more, and do more ambitious projects we will start to see more creative use of our data. We now have multiple Artificial Pancreas Systems developed by the community in use, I created a mobile app based on the community code to give me suggestions on my smart watch when to adjust my insulin pump, this is all shared and provided as free Open Source code that others also use. My app is not closed loop, which is where the dosing would happen automatically based on those suggestions and without human intervention. It is what’s called an open loop system, as it gives you suggestions on how to adjust your dosing which you then choose to follow or not. It’s still about making your own decisions, but now I do not have to stop and think about reviewing, checking, analyzing what to do, the system does it for me every 15mins. My diabetes technology and data is now working for me by giving me informed suggestions when needed, not yelling at me when it all goes wrong and it is too late!”
To go back and read the story Omer’s Odyssey, page 14 of the April 2015 issue CLICK HERE.
READ MORE: Tim Omer explains further about diabetics hacking their medical tech at www.hypodiabetic.co.uk. Read his article, ‘Empowered citizen ‘health hackers’ who are not waiting’ here www.bmcmedicine.com and the DIY science revolution that’s happening beyond the lab here www.sciencemuseum.org.uk
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