Dana Lewis is a creator of the “Do-It-Yourself Pancreas System” (#DIYPS), founder of the open source artificial pancreas system movement (#OpenAPS), and a passionate advocate of patient-centered, -driven, and -designed research.
Dana first created #DIYPS 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 AP, 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 more than (n=1)*1,300+ (see the latest up to date count here) 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 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. She is an experienced community builder and facilitator, after first creating and then successfully moderating the #hcsm (healthcare communications & social media) Twitter community that spanned six continents and ran for 9 years. (#hcsm was used as the model for most healthcare Twitter communities such as #bcsm, #dsma, and more). She combines this community experience with a deep understanding of communication and the tools and technologies that drive collaboration in social media or offline.
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 is Principal Investigator for a Robert Wood Johnson Foundation funded grant project to work to scale patient-led innovation and scientific discovery in more patient communities, as well as co-PI on numerous other diabetes data science and APS-related grant projects. These teams bring together computer and data scientists, healthcare providers, economists, social and behavioral scientists, and others alongside patients to study the different ramifications of projects in the open source, patient-led research communities.
Dana frequently writes and publishes on topics specific to DIY 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. 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 writings frequently appear elsewhere, ranging from publication such as Clinical Diabetes and Journal of Diabetes Science and Technology to being cited in books like Free to Make. 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. She also travels and speaks worldwide 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. 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 continually working to scale the impact of the DIY/maker/(n=1) movement in healthcare, and actively supporting patients from other communities in their work to scale their own impact. She is open to supporting and collaborating with others in the patient or traditional research communities to further this body of work. (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.)