In the second in our series of interviews with the 10 winners of the DiabetesMine Patient Voices Contest that were announced in June, we're chatting with a Philadelphia woman who wants to see more integration and feedback factored into diabetes software. Jana Beck is currently finishing a Ph.D. in linguistics and certainly knows her stuff on the patient side, as she was diagnosed almost a decade ago. That came across in her winning video for the challenge.
Today, we're happy to share a little detail about her own life and advocacy efforts, and what she's hoping to see come from the DiabetesMine Innovation Summit at Stanford University in November:
JB) I was diagnosed as a type 1 when I was 19, at the end of my first semester of college. I was quite lucky in that a friend of mine from high school came to visit me at school over the Thanksgiving holiday and happened to recognize my early symptoms (massive thirst and appetite alongside significant weight loss). She made me promise to make an appointment with my regular doctor when I went home for the holidays, and that's when I was diagnosed.
Although my diagnosis itself wasn't very dramatic, the first few years were quite a struggle, as my endocrinologist and I did not agree on what treatment was best for me. I had to fight tooth-and-nail to switch to MDI after being on an R/NPH regimen for the first year after my diagnosis, and then I eventually had to find a new endocrinologist in order to switch to an insulin pump three years after I was diagnosed.
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Do you generally think of yourself as a patient advocate?
I suppose I'd consider myself an informal patient advocate. I haven't (yet!) participated in any purposeful patient advocacy efforts, but there are various places on and offline where my participation provides an outlet for my views about various issues affecting us PWDs as patients. For example, I've been participating in the Diabetes 365 project on Flickr for over a year now.I also recently gave a presentation at a Quantified Self meetup in New York City where I talked about using about a year's worth of my Dexcom data (and some statistics) to improve my BG control. (The video of my presentation was actually just posted at the main Quantified Self blog last week, and the slides I presented are also available here.)
You focused on integration of products and on positive reinforcement for patients in your video entry. What was your inspiration there?
The short answer is two books I read last summer: Nudge: Improving Decisions about Health, Wealth, and Happiness by Richard H. Thaler and Cass R. Sunstein and Reality Is Broken: Why Games Make Us Better and How They Can Change the World by Jane McGonigal.The first of these discusses all sorts of ways in which changing what might seem like small details about the "design" (broadly speaking) of an environment can result in drastically different results. For example, the authors discuss a case where power customers in San Marcos, CA, were given feedback by way of a simple emoticon to show whether their power consumption was higher (sad face) or lower (happy face) than the average in their neighborhood. This technique resulted in a significant decrease in energy use. Reality Is Broken goes a little further and makes an argument for introducing the attributes of good games — including feedback — into real-world situations. The author even created her own game when she was recovering from a concussion that she's now turned into a website called SuperBetter where players can work towards improving various types of health outcomes through the game. (There aren't any pre-made "power packs" for diabetes yet, but users can create their own goals outside of the given templates.)Reading both of these books got me thinking about applying similar concepts to diabetes technology. I don't think there's enough research into the non-technological side of improving BG control, and I'm sure that's because quantifying things like motivation and self-discipline — the intangibles of good BG control — is near impossible, but at the same time I think that the kind of research discussed in these books provides a lot of good examples of simple changes that can have significant impact on intangibles.
What are you most excited about going in to the DiabetesMine Innovation Summit?
I'm most excited about getting to share my opinions with people in the industry who have the power to change and influence what the next generation(s) of diabetes products will actually look like. I feel really strongly that more attention needs to be paid to the software and user experience side of diabetes technology, not least because I think there's the potential for achieving huge gains for a tiny fraction of the investment (in terms of both time and money) that technology-focused innovation requires.
What would you most like to see the Summit achieve, and what do you hope to bring to the table yourself?
My biggest hope for the Summit is that it will spark a conversation between patients and diabetes technology innovators that can continue beyond the event itself. The brightest future for diabetes technology that I can envision would be one where feedback flows continuously and in both directions between the creators of the technology and its users.
How do you think this might affect your own life with diabetes going forward?
Personally, I'd like to be able to use this opportunity to begin to engage more regularly in patient advocacy. I hope to meet other patients and/or diabetes technology innovators who could be allies on some of the specific issues that I'm interested in (e.g., developing an open standard for diabetes data).
Thanks, Jana! You're in the right place to find those potential allies in addressing these issues for PWDs! We're glad to have you on board.