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The problem was simple but serious. Dana Lewis has type 1 diabetes and is a heavy sleeper, and the alarm on her continuous glucose monitoring (CGM) device that let her know her glucose levels were dangerously low wasn’t loud enough to wake her up at night.
On nights when this happened, she awoke the next day feeling exhausted. It also added to her worry that one day she might not wake up.
For those living with type 1 diabetes, maintaining steady glucose levels at all hours of the day is critical, and doing so while sleeping can be particularly challenging, even life-threatening.
After searching unsuccessfully for devices with a louder alarm, Lewis set out to solve the problem herself. Learning everything she could about her CGM device, she developed a hack that allowed her to turn up the alarm volume and rest easier at night.
But the Seattle woman didn’t stop there. Dissatisfied with the type 1 diabetes treatment options on the market, Lewis sought out her own solutions. Along with her now husband Scott Leibrand, in 2013 she developed a predictive algorithm that forecasts her glucose levels throughout the day and creates personalized recommendations for needed actions.
A year later, using off-the-shelf hardware and additional open-source code, she became one of the first people in the world to build a hybrid closed-loop artificial pancreas to automate adjustments of insulin delivery, a long-sought-after advancement among people with type 1 diabetes, and one that wouldn’t become commercially available until mid-2017. She explains that her system, which is now open-source, continues to offer greater flexibility and customizations than the technology currently available on the market.
Today, Lewis is using this experience to improve the lives of those living with type 1 diabetes by sharing her story and techniques through the online community she founded, OpenAPS.org. By doing so, she is challenging the notion of what it means to be a professional scientist.
Lewis’ work is being supported by a nearly half-million-dollar grant from the Robert Wood Johnson Foundation, administered through the ASU Foundation. She’s working with co-principle investigators Eric Hekler, associate professor in the School of Nutrition and Health Promotion, College of Health Solutions, and Erik Johnston, associate professor in the School for the Future of Innovation in Society and director of policy informatics at the Decision Theater. Along with Keren Hirsch, business operations specialist with the Tempe Decision Theater, postdoctoral fellow John Harlow and doctorate student Sayali Phatak, the team will explore the potential of citizen scientists like Lewis to disrupt traditional scientific research and give patients the tools they need to better manage their health care.
Hekler first met Lewis in 2016 when she presented at a conference he was attending. Inspired by her work and message, he felt compelled to support her efforts, bringing Johnston into the discussions.
“We are called to be responsible for the economic, social, cultural and overall health of the communities we are a part of,” Johnston said. “Waiting for expertise to arrive fails vulnerable populations. Dana is demonstrating, and we will affirm through this work, that expertise is not just credentialed expertise. This was ASU’s charter in action.”
Hekler hopes to determine how expanding patient-led, use-inspired scientific research and data collection can inform real-world problem-solving.
“Dana is the type of person we need to reinvigorate the population to be engaged in questions of science and how common people can find solutions,” Hekler said.
“There is an inherent power hierarchy in health care that puts patients between a rock and a hard place,” Lewis said. “Patients are expected to be compliant with the doctor’s orders, but also engaged and empowered to drive their own care. Through this grant, we hope to begin dismantling this hierarchy and provide new pathways for patient-led research.”
It’s a different way of looking at science and medicine, one the team rightly acknowledges.
A communications professional by trade, Lewis doesn’t possess a traditional technical, engineering or medical background. The self-taught scientist is defying the customary model for science education, research and discovery, using her experience as a patient to inform her work.
“Living with type 1 diabetes has given me an acute understanding of my body, what it needs and how it reacts to changes,” Lewis said. “Patients living with a chronic illness have invaluable experiences that can inform our understanding of the disease and the development of personalized treatment options.”
Over the course of the 18-month grant, the team will explore strategies for supporting patient-led research. An on-call data science team will collaborate with patients to answer questions from people with type 1 diabetes seeking to improve their knowledge of diabetes management. An open data repository will store patients’ donated glucose-monitoring information in support of community-based research and discovery. The team will scale the work to other patient communities through the creation of protocols and training materials, with the goal of reducing the distance between knowledge discovery and use.
In spite of the team’s enthusiasm, the patient-as-scientist model is not without its critics.
“Patient-led research is often not taken seriously or respected by the academic and medical establishment due to it being driven by ‘non-professionals,’” Lewis said.
The model raises questions about the safety of self-experimentation, the reliability of data and the validity of research findings. The team will explore these very topics as part of the grant, as well as the barriers to patient-led research and stigmas associated with it.
To date, more than 400 people around the world have used Lewis’ research and experiences to develop personalized closed-loop systems, including Leo Koch, an 11-year-old in Waterville, Maine, who has been successfully managing his type 1 diabetes for the last year using his own closed-loop system.
“It’s been life-changing for us,” said Leo’s mother, Hilary Koch. “It’s been life-saving. If we could scream about it from the rooftops, we would.”
Leo’s mother is a vocal advocate for Lewis’ work and the system that changed her son’s life.
“The industry wasn’t moving as fast as it should have been,” Koch said. “We are not waiting to keep our kids, loved ones, brothers and sisters safe.” Since her son began using the closed-loop system, his outlook has dramatically improved. “He will always be type 1, but it is so under control that a doctor wouldn’t diagnose him with type 1 diabetes looking solely at his glucose levels.”
And although Lewis’ system would seem primed for the commercial market, drawing attention from the U.S Food and Drug Administration, her intentions are more altruistic.
It’s her commitment to helping others living with type 1 diabetes that makes this project so unique, said Hekler.
“She isn’t doing this to try and get rich quick; she’s doing it to help other people live healthier, happier, safer lives,” Hekler said.
Lewis hopes that the development of information-sharing systems for patients in the diabetes community and beyond will allow greater collaboration among patient scientists and encourage non-traditional thinking about health-care innovation and discovery.
For Lewis, the grant is validation of her years’ worth of work.
“The fact that both ASU, with its reputation for innovation, and the Robert Wood Johnson Foundation have both said, ‘This work matters,’ means everything,” Lewis said. “It’s incredibly rewarding.”