Welcome to another visit with our 2014 DiabetesMine Patient Voices Scholarship winners, who'll be representing the patient community at our 2014 DiabetesMine Innovation Summit at Stanford University in November.
Today we're talking with Julie Schulman, who was diagnosed as an adult while pregnant with her first child. Working as a scientist at the Virginia Bioinformatics Institute, she's also half-way through her Masters of Public Health degree in epidemiology. In the diabetes realm, we've enjoyed reading Julie's Cybernetic Diabetic blog and I love how she is a fellow child of the 80s like me, finding humor in the short-hand "T1" for type one diabetes.
Read on for details...
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JS) I was diagnosed with T1 diabetes when I was in my fourth month of pregnancy with my first child, Ruby. I was 33. Luckily for me, I had an excellent endo at the time who recognized immediately that it wasn't gestational diabetes, so I got on board with MDIs (multiple daily insulin injections) and strict carb counting right away. Why did I already have an endo? Well, I was diagnosed with acute onset Grave's Disease when I was 22. Grave's is autoimmune just like T1, except your body attacks your thyroid instead of your beta cells. So, now I'm down a thyroid and a pancreas. Immune System: 2, Julie: 0.
Your blog title refers to a funny inside joke regarding type 1 diabetes, we've heard...
Yes, I laugh every time I refer to myself as a "T1" because "T1" is also the name of the original (and somewhat clunky) generation of cyborgs in the Terminator movies from the 1980's. For those of you non-sci-fi geeks out there, a cyborg (aka cybernetic being) is "a being with organic and artificial parts." I don't know about you, but with all the infusion cannulas, CGM sensors, and medications that keep me alive, there are definitely days when I start to feel like I'm half-woman and half-machine. Ironic, huh?
What's your definition of a patient advocate?
This is a tough one. I actually Googled it (I think Googling must be in my genes) but it didn't help much. Initially when I think of patient advocacy, I think of big conferences and well-educated healthcare professionals with impressive degrees, such as Standford Medicine X and Nurse Practitioners. However, I suppose a more general definition would/should include anyone who is active in patient-centered healthcare. I think a patient-centered focus is still a relatively young concept in our current healthcare system and I'm excited about where it can end up taking us in the future.
I also tend to get on a soapbox about advocacy for lifestyle changes involving healthier eating and less-processed foods. I believe the obesity epidemic is very real and very dangerous, especially for children.
How did you get started in diabetes advocacy?
I started my blog in 2013 and have often found myself writing about improving the quality of life for PWDs by working to automate, integrate, and analyze our diabetes data. I've written several posts about it such as "Big Diabetes Data Requires Big Analyses" and "Pixels: Your Personal Diabetes Big Picture." (Sadly, with moving my family four times in the past 6 months, my blog has taken a serious hit in terms of productivity...but we finally got settled in just a few weeks ago and I'm hoping to become more active again.)
And you're really involved in diabetes tech development too... ?
I served as a beta-tester/reviewer for the mySugr app and submitted my own ideas for a personalized diabetes management platform, entitled "Pixels, Your Personal Diabetes Big Picture," to the 2013 Target Simplicity Challenge.
Meanwhile, through my blog, and the DOC (Diabetes Online Community) at large, I've discovered so many wonderful people who share this vision of simplified diabetes management. In only 10 months since I began this journey, I was able to pull together a team of collaborators (including endocrinologists and healthcare providers, researchers, and software developers) to request federal funding to help turn this vision into reality.
In a nutshell, the proposal we submitted to NIH requests funds to build and test an application, like Pixels, using the Tidepool infrastructure with the following goals: 1) Use participatory design to develop a customizable mHealth application that automates, integrates, and analyzes patient generated data both from existing non-diabetes quantifiable self-tracking tools, such as wearable fitness devices and applications; and from insulin-dependent diabetes devices such as glucometers, CGMs, and insulin pumps; 2) Automatically mine the data for predictive, actionable correlations, opening the door to bring personalized medicine to insulin-dependent diabetics and their clinicians through individualized, evidence-based, decision support; and 3) Pilot the mHealth application to evaluate feasibility and utility for users.
The application we want to build would also automate multi-variable data entry, allow users to add contextual data, enhance and record patient-provider communication, enable data sharing between patients and providers, and explore integration of data with electronic medical records (EMR) and patient health records (PHR).
What brought you to the DiabetesMine Patient Voices contest?
I was inspired to enter the contest because I really wanted to attend the Summit. One of the collaborators on the proposal, Dr. Andrew Rhinehart, had met Amy Tenderich at a previous event and other collaborators, Howard Look and Brandon Arbiter from Tidepool, had attended the Summit in the past. I think it's a wonderful opportunity to meet some of these collaborators in person and potentially make new connections for future endeavors. I had literally just finished the proposal a couple of days prior to the Summit entry deadline and it was a mad rush to complete my Test Kitchen video (on Mediband and Mediband Plus) but I'm so glad I did it. Also, while I'm totally comfortable making training videos for websites and such, composing a video that featured (gulp!) me in it was pretty terrifying! It was a personal challenge and I'm proud of myself for overcoming it. Special thanks to my husband for lending me his video production skills and talking me though it!
What do you hope to bring to the DiabetesMine Innovation Summit yourself?
I am enthusiastic about wanting to make a difference! We should be capitalizing on the BIG data we collect every day -- data that requires computers and algorithms to mine, not the human brain alone. Society already mines complicated datasets in many fields and has the skillset to make life with diabetes less taxing. Healthcare just needs to catch up!
I'm excited to meet more people who have ideas for improving life with diabetes, hear their stories, and find out about the wonderful research going on!
How can this kind of advocacy program potentially affect your life and the lives of others with diabetes?
I believe early inclusion of participatory design is paramount to designing diabetes management tools. We're all different, both biologically and behaviorally; therefore our diabetes management plans need to be different too. Patients should be involved from the early design phases in order to create tools that really help.
I view this type of program as a catalyst for participatory design in healthcare tools, algorithms, medical devices, etc. that can improve our lives on a daily basis. Anything that will allow us to manage our health conditions better and easier is a win for us all! I also think there is real merit in scientific experiments that can help to determine which self-management tools work the best (and even which tools work best for specific sub-populations of patients). This kind of peer-reviewed information can help to support the case that patients need more affordable access to these tools/devices.
Thanks for sharing, Julie! We can't wait to tap into your bio-design experience and passion at our Summit in November!