The “DIY Science Revolution” is not only part of the title of a travelling exhibition that showcases creative individuals and their innovative healthcare projects. Its final word also semantically signifies the radical shift of a paradigm. Starting a revolution basically requires a common cause and a group of people who go into action to pursue mutual interests. Moreover, every upheaval in a classical sense has some bad state of affairs that makes the turnover indispensable. In all of the cases portrayed in the exhibition, “patients are doing it for themselves” means a commitment out of necessity—that is, the lack of commitment on the part of the dominating healthcare system—not to be understood as foul as the monarchy prior to the French Revolution, but not suitable for those in need.
One who saw a need to take over control is Timothy Omer. Struggling with type 1 diabetes for over 22 years, he decided to look for ways to improve his life by making three major decisions: 1) get rid of a stressful job which affects not only the disease but the quality of life in general, 2) reduce the cost of living and dependency on “consumer sociality” and 3) connect with people who are suffering with the same condition and to work more on personal projects that could also help others with the management of their type 1 diabetes. First off, Timothy and his family moved from very expensive London in search of a simpler life. During the quality time they gained, Tim strove to invest more time into developing solutions that make better use of the type 1 diabetes devices available as well as the data they produce, and into lowering the costs of such devices. Last but not least, the do-it-yourselfer began to take advantage of sharing ideas via his own blog, which eventually came to the attention of not only those who are involved in the same struggle but also the established developers of commercially available Continuous Glucoses Monitor (CGM) systems.
Asked if he considers himself a drop-out, rebel, or generally a self-motivated person, he noted that it takes a certain amount of drive and also technical abilities to come to autologous conclusions.
Timothy Omer: The reasons to go for that radical change are manifold. As someone who always tried to spin my diabetes to a positive strive, I saw the benefits of avoiding stress which came from my job but also from the London lifestyle in general. Second, it was the frustration which arose from the fact that, as a creative person, I did not fit into the full-time job model. With the patient movement #WeAreNotWaiting, people who are taking charge of the devices and data by hacking their own solutions in fighting diabetes that has come to light in the last couple of years, I found it beneficial for me and others to use my creativity to a positive effect. As a technical director for CBS Interactive, I had to look after the implantation of technology that the company used. So my expertise is in the area of conveying technology to non-technical people. That’s an important bit because a lot of technologically gifted people can struggle to work with their non-technical counterparts. You may have a top technical product, but the user can’t handle it, and so it becomes worthless. Translated to the field of diabetes, there are open source community projects to help with the management of type 1 diabetes, but access can be limited based on the skill of the patient. Unlike commercial systems, these community projects are implemented by the individual. I try to document, discuss and develop solutions that are going to be more accessible to the wider non-technical population. Why should a person who is not technically capable lose out on the benefits of technically managing their condition?
How did you hook up with the people who were starting that open source movement by implementing a platform with the hashtag #WeAreNotWaiting? A platform—for those who don’t know—which informs patients on how they can manage a DIY kit by which they control their basal rate for their insulin pump and which calculates their insulin rate.
Timothy Omer: I personally required a CGM (Continuous Glucoses Monitor) when I wanted to calibrate my new insulin pump for travelling in 2013. Without that system, you need to carry around a lot of injections and carry multiple types of medication, which is a nightmare. That’s when I came across the diabetes technology for the first time and found its cost to be ridiculous. There was a community built on the same frustrations. They had devices with data but they had no system to manage the data or, at times, afford continuing use. When I returned from a year of travel, people had already developed open source solutions and so I jumped straight in, thinking that this was amazing. At that point, I could not see my contribution but wanted to reduce the costs of my CGM—and if you take a look at my blog, you can see how I hacked the transmitter and used community software so I could afford continuing use of my CGM. With the help of the community, I could now afford a CGM and started to look at the OpenAPS.org project to use this CGM data. I now had to implement an Artificial Pancreas System to automate my medication. This was originally developed by Scott (Leibrandt) and Dana (Lewis), who themselves used other shared community projects. Their system was based on the Raspberry Pi minicomputer and required multiple devices to be attached to it along with a battery carried by the patient, but I felt this was not the ideal platform. “Why don’t we use our smartphones as central control device?”. Developers can be very attached to the platform they use, and this can at times result in systems with limited access to less technical users. This is a common situation I have experienced in my professional life. So, I took it upon myself to learn Android development, and came up with a mobile app that captures my diabetes data and provides feedback suggestions to adjust my insulin pump based on the code from OpenAPS.org, xDrip and other community projects.
“The Open Source Community is the only healthcare system that exists where the patient is the priority! And that’s the most fascinating thing about it.” (Timothy Omer)
Reading that only 300 people are using a so-called closed loop system—a system that regulates the basal ratio automatically and injects the amount suggested—I was wondering why only such a small number do so! Don’t they trust themselves in handling a device which was built in a do-it-yourself-fashion? Do they lack information because they have not arrived in the digital age yet?
Timothy Omer: There are two questions involved with yours… one is: Where are we at with healthcare and technology? And the second is the usage of that! First of all, you need to be able to handle not only technology but also your diabetes, which is a full-time affair. It is a unique combination of skills required to deal with those systems. Also, it is very common with new technology… the first days are not very consumer-friendly. You have to make yourself aware, you have to inform yourself, be technically minded, and you need to know how these systems are to be utilized. The positive side is: the early adopters are generally well-practiced. The learning curve for the mobile app that I developed, compared to the traditional open source code, was a step forward in the sense that it was suddenly more accessible. Installing an app on your phone is a lot easier than setting up a Linux environment and the other requirements. So we come to a point where the technical boundaries get less and less and, at the same time, more people get access and we need to reconsider the risks … imagine emotional parents who have a child with diabetes. They might think they have the cure by installing the app or have a shortcut by which they can manage diabetes, but I can assure them that this is not the case.
Which systems are available and what are their pros and cons?
Timothy Omer: There are multiple community projects. You have low risk projects that “free” your diabetes data (NightScout, xDrip, NightWatch) and make it more useable—for example, displaying your CGM readings on your SmartWatch, and higher risk projects (OpenAPS, AndoridAPS, HAPP, Loop Kit) that take data captured by these systems and, with community-developed algorithms, suggest alterations to your medication. Of the latter, there are basically two systems: closed loop and open loop. Both systems take the captured diabetes data that now, with the community code, the patient has full access to and control of, along with the patient’s personal profile and provide suggested alterations for their insulin pump. Closed loop then actions this automatically and open loop requires the user to confirm and manually action the suggestion. That’s people’s biggest fear and the biggest risk… because you let the technology take control. It’s more a mental condition to have type 1 diabetes – it is a 24/7 occupation, so you are constantly pressured and have to constantly think about your diabetes management. You are faced with enduring frustration with your body. So now we have a system which gives advice, which is quite scary for a lot of people. The advantage is that the suggestions are reasonable, they are not based on assumptions like human beings are prone to have. A human being can be reactive, emotional and at times illogical; technical systems do not have these limitations.
The codes I utilize with the HAPP open loop system is the same as the closed loop projects. I built it as an experiment but was surprised how useful it was to get suggestions. I had an automated system checking and performing calculations for me automatically and making suggestions only when needed. But then again, you keep on arguing with the systems from time to time, which is positive, because the patient is in control and better informed. This also means that, over time, the patient comes to trust the algorithms providing the suggested alterations.
Was your decision to delve deep into that matter also a way to fight the healthcare system or the commercially available systems or even the established experts? Because in the exhibition entitled “Beyond the Lab – the DIY Revolution” the organizers insinuate a rebellion?
Timothy Omer: The important thing I have to say is this: “Do not abandon the experts just because we, the people, can now be involved in finding solutions!” When I have attended medical industry events to discuss this movement, a lot of frustrated people approach me raging against the experts.
„This movement exists because we are not using the technology to its full potential!“ (Timothy Omer)
The technology we are using now is comparatively old, but the costs hve not declined. It is not necessarily being developed to benefit the patients. The frustration of that community doesn’t lie in the fact that the experts are ignoring us. The consumption society we are living in is not benefitting the patients by creating better technology with easier access and lower costs. There are many issues like the regulation process (of the healthcare system) which is unrealistic. The pace of technology can’t go along with those regulations; the time it takes to get something approved is unrealistic. The medical industries run the constant risk of being sued. There’s investment in the newest technology, and not in making the cheapest available technology better; it is only applied for the sake of recency, not to achieve cost reduction. It’s like the mobile phone industry that wants to sell the latest feature whereas the old model has worked better in all other ways. So, the old story of creating unnecessary needs is at work here.
In the industry, the point is to monetize. The National Health Service (in the U.K. for example) prioritises statistics by asking: “What is the most cost-effective way of treating a patient?” Charities’ number one priority is to sustain themselves so they can exist. So in each of these above-mentioned fields, the patient always comes second.
When it comes to rebelling against consumer features like the replacement of the transmitter every year, that’s the point when we are forced to replace the battery ourselves, because it is designed in a way to be a consumable and therefore to generate a profit from people’s illness.
I guess the most awareness-raising feature you have come up with in this regard is packaging the system inside of a Tic Tac box!
Timothy Omer: You are absolutely right! I believe it was Stephen Black who discovered we could fit the components into a Tic Tax box. I love this as it is a symbol which reminds us how ridiculous the costs are when it comes to consumer products. The great thing about technology is: “There are no boundaries”, especially now that, with the hobby technology movement, components are cheap. We have a global network to communicate and share ideas, and well-educated individuals who have a common goal working together.
A Type 1 Diabetic for over 20 years he has been frustrated with the lack access and progress of technology to help him manage this data intensive condition and frustrated that he has to rely on one of the most unreliable processors of this data – himself. Working with the #WeAreNotWaiting community of citizen hackers to build an Artificial Pancreas mobile app to help reduce the burden of capturing data, lower costs and producing suggestions on adjustments to his medication.