Dana Lewis is the creator and founder (and a developer) of the open source artificial pancreas system movement (#OpenAPS), and a passionate advocate of patient-centered, -driven, and -designed research. She’s also a researcher, data scientist, and app developer who creates apps such as “PERT Pilot” and “Carb Pilot“.
You can find more of her research here.
Dana first created #DIYPS (a self-coined “do it yourself” pancreas system) in December 2013 as a solution to make her own continuous glucose monitor (CGM) alarms louder. She iterated on this tool with Scott Leibrand, leading them to develop a simple (but effective) predictive algorithm that forecasts hours into the future and creates personalized recommendations for any necessary actions. Dana actively shared online about #DIYPS and engaging others from the #WeAreNotWaiting community in collaboration, including around development of the Nightscout Project. Within a year, they realized that Dana would be able to “close the loop” and create a hybrid closed loop artificial pancreas system to automate microadjustments of insulin delivery, by using the basic algorithm from #DIYPS and pairing it with off-the-shelf hardware and other open source code and tools to communicate directly with her insulin pump. Not satisfied with being one of the few people in the world with a DIY APS (now known as “Automated Insulin Delivery”, or an AID system), Dana looked to the open source world as a way to pay it forward and enable others to self-build their own systems, too. Thus, #OpenAPS was created in February 2015, and the rest is history. There are now thousands of individuals around the world who have also built their own DIY artificial pancreas using a variety of tools and technology from the open source, “DIY diabetes” community.
Rather than coming from a traditional engineering or research background, Dana brings together a mix of technical and communication skills and a unique perspective to focus on bringing together individuals regardless of their traditional “role” in healthcare.
As a result, Dana has taken a leadership role in a number of research projects that bring together diverse perspectives (academic, industry, government, and patient communities, to name a few). She has been PI or Co-PI on numerous diabetes data science and AID-related grant projects, funded by organizations such as the Robert Wood Johnson Foundation; JDRF; New Zealand Health Research Council; and others.
Dana frequently writes and publishes on topics specific to DIY and open source diabetes work and the broader implications of patient-driven and -designed research. Dana also authored the book, “Automated Insulin Delivery: How artificial pancreas “closed loop” systems can aid you in living with diabetes“, to help more people understand automated insulin delivery systems, in addition to a series of children’s books such as “Understanding Automated Insulin Delivery: A basic book for kids, family, and friends of people living with diabetes“. Her work has been referenced or featured in Nature, The Lancet, WNYC’s “Only Human” podcast, The Wall Street Journal, Popular Science, WebMD, Diabetes Forecast, USA Today, and other mainstream media publications. Her own research and writings frequently appear elsewhere, ranging from publication such as the New England Journal of Medicine and the BMJ to Clinical Diabetes and Journal of Diabetes Science and Technology. She was invited numerous times to the White House under the Obama administration to participate in workshops related to the Precision Medicine Initiative, in addition to being invited by the White House to speak on stage at the White House Frontiers Conference. Additionally, Dana collaborates actively with HHS, NIH, and FDA officials on a regular basis in the U.S., in addition to sharing insight with government officials in other countries interested in patient-driven innovation. Dana serves on the Board of Directors for the Open Humans Foundation and for Life for a Child USA, as well as serving as a member of the International Steering Committee for Life for a Child.
Dana travels and speaks worldwide (and virtually) on the topics of patient DIY-ing, OpenAPS, and the changes coming to health and healthcare as a result of patients having easy access to technology and collaboration tools in their pockets. This now includes keynotes on the topic of AI (artificial intelligence, such as large language models (LLM)) in healthcare. Dana has keynoted at conferences ranging from the O’Reilly Open Source Conference (OSCON) to a convening at European Parliament. She has been honored with the Edison Foundation’s “Best Use of Intel Edison” Award (2017); one of Fast Company’s “100 Most Creative People in Business” (2017), and Red Hat’s Women In Open Source Community Award (2018).
Dana is open to supporting and collaborating with others in the patient or traditional research communities to further this body of work. You can see her past research and find author copies of her work here. (Please reach out if you are a fellow patient-designer/-researcher looking for support, or a traditional researcher/scientist looking to collaborate. Dana can be reached by email at Dana@OpenAPS.org.)