Dana Lewis: Developing Diabetes Data
Diagnosed with type 1 diabetes during her freshman year in high school, Dana Lewis quickly dove into diabetes awareness by creating a support group and becoming youth ambassador for her local ADA chapter in Huntsville, Alabama. After seeing the opportunity to create more awareness about diabetes and raise more money for research and education, Lewis was inspired to apply to the National Youth Advocate Program.
“Being NYA reaffirmed my interest and commitment to working in health care and improving communications but also helped me meet people working in all areas of health care,” says Lewis, who became National Youth Advocate at age 16. Lewis continued to volunteer with the ADA and also served as an International Youth Ambassador to the International Diabetes Federation’s conference in South Africa.
Today, Lewis lives in Seattle and works at Providence Health & Services, a nonprofit organization that operates hospitals and clinics throughout the Pacific Northwest. She leads Providence’s digital content team, which helps the organization communicate with patients online through a variety of channels.
In her free time, Lewis keeps busy with a variety of health- and diabetes-related projects. Since 2009, she’s moderated a Twitter chat on Sunday nights for anyone interested in the intersection between health care and social media—hence the hashtag: #hcsm.
Lewis is actively involved with We Are Not Waiting, a movement of passionate individuals looking for creative ways to advance diabetes technology. An example of their work is Nightscout, a DIY work-around that uses an Android phone to send data from a Dexcom coninuous glucose monitor (CGM) to a Pebble Smartwatch so that glucose information and trends can be viewed independently from the Dexcom receiver.
Lewis and her fiancé, Scott Leibrand, have invented the Do-It-Yourself Pancreas System, which was born out of Lewis’s desire to hear her CGM alarms better at night. Lewis believed she could do more if she could access the CGM data in real time and wanted a more predictive approach to managing blood glucose. With the help of the community, Lewis and Leibrand created a software tool to incorporate how much she was eating and how much insulin she was taking to predict her glucose levels.
A word of caution: Homemade data sharing and management systems created for personal use by technologically advanced users operate in a gray area of indications and device regulations, and experts understandably have safety concerns. But it’s clear that tech-focused vocal users such as Lewis have inspired both the Food and Drug Administration and device makers to take notice.
“DIYPS and Nightscout are important because we are not waiting for advances in medical technology to make it to market when they can be made available on a smaller scale to us today,” says Lewis.
Lewis plans to continue working in health care communications and developing new methods of using diabetes devices. “There’s no right way to be involved and there’s definitely not a wrong way,” Lewis says. “We can use every skill someone has and definitely their energy and passion to help make life easier for people with diabetes!”
There are many ways to get involved with the American Diabetes Association. The first stop: diabetes.org/volunteer. Sign up so your local office can contact you about the full range of volunteer activities.