Curious about “Artificial Pancreas” systems available now, and how you might use one to improve your diabetes management? We have excellent news! Dana Lewis, the innovator behind the first-ever homemade “closed loop” system OpenAPS is launching a new, hands-on guidebook available for free on the web!
Her new eBook for patients, titled “Automated Insulin Delivery: How Artificial Pancreas “Closed Loop Systems” Can Aid You Living with Diabetes” kicks off with an explanation and words of motivation:
“Automated insulin delivery is a technology for managing type 1 diabetes that goes by many names: hybrid or full closed loop, artificial pancreas system (APS), ‘looping’, and more. But whatever you call them, automated insulin delivery systems are not all the same. You have choices, ranging from the type of insulin pump body and CGM you want to use, to the algorithm and controller, to the interoperability and remote monitoring options, and more. Like switching from multiple daily injections to an insulin pump, switching from manual diabetes to automated insulin delivery has a learning curve… It’s certainly one you can tackle.”
* Review the basics of Artificial Pancreas (AP) technology *
The book includes eight easy-to-read sections, from explaining the systems and why someone would want to use one, to choosing the AP system right for you, through to troubleshooting, tips and tricks, and even a section on doctors and AP systems and what to know about the latest research.
There’s also an excellent foreword by Aaron Kowalski, who spearheaded JDRF’s national Artificial Pancreas (AP) Program before recently being named CEO of the organization. He describes author Dana Lewis as “a true visionary… who has and continues to make a massive difference in the field of diabetes and has improved thousands of lives playing a pivotal role in a key component of this revolution: the mainstreaming of do-it-yourself (DIY) automation of insulin delivery.”
He also writes: “You may be asking why the former lead of the JDRF Artificial Pancreas Project would be touting DIY systems… It’s because DIY and commercial systems are not mutually exclusive! JDRF has deployed significant resources to speed the development and availability of AP or automated insulin-delivery systems (AID systems)… We needed these solutions years ago, not years from now. The DIY community took the bull by the horns, integrated their medical devices with cell phones and watches and other non-medical technologies, and began to rapidly iterate on problems and develop and evolve solutions that added value to them – the community. These solutions address both sides of the equation – they improve glucose control and they reduce the burden of diabetes management!”
We spoke with Dana about her progressive work and the details of this new one-of-a-kind AP handbook:
DM) Hey Dana, since creating the OpenAPS system with your partner Scott Leibrand in 2015, you’ve become something of a celebrity. What’s that been like for you?
DL) It’s definitely been quite an experience to have people running up excitedly to give me a hug and take a selfie with me! But aside from that, I don’t think much has changed since I started doing DIY diabetes projects. I have long been helped by so many people in our community, and I still feel the same level of obligation to keep “paying it forward” myself and helping as many people as possible access the APS technology of their choice (DIY or otherwise). That was the driving goal behind OpenAPS as a movement from the get-go, and that’s still how I feel about it today.
I love having the peace of mind to go to sleep at night and living my life every day not worrying about diabetes, and love hearing stories of how our efforts have given others the same freedom. I want to keep doing everything I can to help other people achieve the best quality of life that they can possibly have while we’re all still living with diabetes.
And how has it changed your career path?
I have learned so many things myself through OpenAPS and other related #WeAreNotWaiting projects in the past 5+ years. Many people think I’m an engineer/developer by training, when in fact I instead come from a communications background! I’ve learned some programming, data science, etc., and it’s a combination of these things that has allowed me to now move into a research role and spend more time facilitating and doing research projects. I consider my career currently to be that of an “independent researcher” now.
What are some of the open source / patient innovation projects you’re working on now?
I’m still working on all things OpenAPS and #WeAreNotWaiting in my “free” time, of course! But I’m currently nearing the end (in September) of my “Opening Pathways” project which has been looking at barriers to scaling patient innovations and research of all kinds. It’s been really interesting to discover that, in addition to more resources for patient innovators, there’s also a big need around “partners” (e.g. academic researchers) who very much want to help work with patients and collaborate, but may not know the best way to get started.
One of the ways I’m trying to encourage more of this type of collaboration specifically in the diabetes world is with the OpenAPS Data Commons. By sharing data donated by the community with researchers, we can enable deeper exploration into topics we (the diabetes community) care about, and get more researchers interested in working in the T1D space.
For example, last year I started talking with a researcher named Azure Grant at a Quantified Self meeting, who had been studying Freestyle Libre data from a few individuals without diabetes. After some interesting initial results from comparing her data to our data from individuals with T1D, we responded to a JDRF RFP to work on projects with the Tidepool Big Data Donation Project. Azure, along with one of her mentors, Lance Kriegsfeld (professor of Psychology, Neuroscience, and Endocrinology at UC Berkeley), agreed to partner with me and pursue the project as part of her PhD work there. We have now been awarded a one-year grant by JDRF, and will be undertaking the first longitudinal study to characterize biological rhythms in T1D, which could also be used to inform improvements and personalize closed loop systems. As with all of my other projects, we plan to share all knowledge and tools created in the open source community for others to work with and build upon.
I’m also proud to be a part of the new OPEN (Outcomes of Patients’ Evidence with Novel, Do-it-Yourself Artificial Pancreas Technology) project. OPEN brings together an international and intersectoral consortium of patient innovators, clinicians, social scientists, computer scientists and patient advocacy organizations to establish an evidence-base surrounding the impact of DIYAPS. It’s wonderful to have funding to bring more researchers to the table to evaluate DIYAPS and assess the impact and knowledge of the DIYAPS community — all with the goal of continuing to share openly back with the community as well as facilitating future developments and innovation in all sectors. I’m co-leading (along with Adrian Tappe, one of the developers and maintainers of AndroidAPS) the technical development/analysis work package, and I’m excited to get to work with several more data scientists in analyzing data regarding some of our priority research questions around growth and T1D, menstrual cycle, etc.
With a number of industry players getting so close to launching commercial AID (automated insulin delivery) systems, do you think the DIY options will start to melt away?
I think we will still need as many options as we can have on the table, both commercial and DIY! There may be some countries that have multiple commercial options available (won’t that be great!), but there are still many places where funding/access/coverage to pump and CGM is limited, and similarly funding/access/coverage to APS will also be limited. In those areas, and for the parts of the community that want the most advanced features ASAP and the most customization regardless of where they live, I expect DIY systems will still continue to be used.
Is this new guidebook for users a labor of love, or part of a funded project?
It’s 100% a labor of love! I had been pondering how we capture some of the knowledge that’s buried in “old” blog posts from the past ~5 years of the DIY community and make it available to people who are new to finding out about APS. Some of the “old” information is still 100% relevant today, but unlikely to be found unless someone gets lucky and stumbles across it with the right search terms.
That’s where the idea for the book came from: to capture the existing knowledge and around successful APS usage in the real world — whether that’s DIY or commercial — and help someone who’s new to APS get more comfortable with understanding the new technology, how to make choices for a system, understanding the components, and figuring out how to live real life with a closed loop system.
And the book is available for free download…?
Yes, the book is available in 4 formats: 1) a free website (ArtificialPancreasBook.com); 2) a free PDF download; 3) a Kindle version; and 4) physical copies are also now available for purchase on Amazon.
What is your aim with the book? What would you consider success?
Success would be someone reading the book and walking away feeling like they now understand what APS/closed loop is and how it may (or may not) be a good fit for them. I have written it targeting people who are newer to APS, but I was pleasantly surprised to hear from a healthcare provider (who has type 1 herself and also is using a DIY closed loop system) who reviewed the book early on that she learned several new things after reading it, too!
This book won’t answer every detailed question someone has about a particular system — and it’s not meant to be the definitive guide for a particular system, either. There’s links to each of the DIY projects, and I’ll add more links as newer systems come to the commercial market. Instead, this might be a good “first read” for someone who’s wondering about the basics and doesn’t want to dive deep into the nuts and bolts of a particular system yet.
With the FDA obligated to issue a safety warning on DIY AP systems on May 17 following a user incident, do you think that will hinder innovation? Or perhaps fuel the fire to get regulated systems out to market even sooner?
I don’t think it will hinder innovation at all. The number one goal in the DIY community is safety. The FDA cares about safety. The manufacturers care about safety. So we all have the same shared goal. If this lights a fire under more people to bring solutions to market sooner, that’s fantastic! The more choices and solutions we have as a community, the better.
As a pioneer patient innovator in this space, what do you think your mission will be going forward?
I think it’s the same mission that I had on “day 1” of discovering that I could make diabetes technology work better for me, and that other people might also benefit, too. What can I do to make my life easier and safer while living with type 1 diabetes? How do I make tools and technology available as quickly as possible, and in a safe way, to help others living with diabetes as well?
But I’ve also come to realize that, while the rallying cry of #WeAreNotWaiting came first from the diabetes community, it is beginning to resonate with a lot of other healthcare communities working to improve their quality of life and change healthcare for the better. My goal is also to help support this broader movement of people and projects, regardless of what area of healthcare they’re in, to also say #WeAreNotWaiting.
Thank you, Dana. And we say: Amen to that!