Julie Cabinaw, who lives in Boise, Idaho, is a type 2 who’s no stranger to innovation and web-based technology. She’s worked in software and web tech, product strategy and user experience for 18 years for companies like Microsoft, Healthwise, HP and Scentsy! On top of being a proud wife and mom to four kids — ages 13, 12, 5 and 2 — Julie is very passionate about innovation and product integration and brings the perspective of both a patient user and someone working in the industry.
In her winning contest video, Julie talked about a number of issues such as device standardization and convenience, and having a personalized health cloud available to use (something not all that far-fetched since we’ve now got five iPhone generations released to the public!).
Today, Julie shares a little about herself, her own advocacy story, and what her hopes are regarding the DiabetesMine Innovation Summit coming up in November:
DM) Julie, tell us about your own diagnosis…
JC) I was diagnosed with type 2 diabetes in 2008. I probably had it quite a bit earlier than that. I had progressively worse gestational diabetes with each of my four pregnancies. By my third pregnancy, I had to switch to using an insulin pump and was taking close to 300 units a day to maintain my blood sugars in the normal range. My entire family minus one (2 parents and 6 of 7 brothers) all have type 2 diabetes, so it always felt inevitable to me. I pretty much knew after baby #3 that that was it, I’d tipped over the edge, so the diagnosis was not a surprise. I’d been on metformin for other reasons since 1998, so it’s hard to say when I really tipped over into full-blown type 2, as the metformin was probably keeping things normal for quite a while without any effort on my part.
I am not sure if ‘patient advocate’ is the right word, but I do find myself to be the person among my family and friends who will seek out health information to help people improve their lives. Part of that comes from working for a great company that advocates for patient empowerment, but truly it has been a personal interest of mine since a difficult health issue for me lead to some unwanted outcomes. I learned at that point that if I had spoken up better for myself, I probably could have very likely had a completely different outcome. It was at this point that I began to realize that my view of doctors as the boss was not right for me and that I needed to try to overcome my view of them as authority figures and do my own research so that I felt like I could ask questions about recommendations I was given.
I try to help myself and my family and friends have that same ability — to have a partnership with their doctors, and to know enough themselves to ask questions of their doctors.
Your winning video focused emphasized the personalized health cloud. What’s behind that wish?
My experience with intense insulin therapy and micro-management needs of my insulin during my two pregnancies really was hard and I put in a lot of time to ensure that my doctors and CDEs had the right information. With my background in technology, it really frustrated me to see that I was treated suspiciously for wanting to access my own medical records, and found it so very difficult to share my data with my providers. It shouldn’t be that hard! I know that many of the blockers in PHR (personal health records) and EMR (electronic medical records) are not technology but rather the industry — both regulatory and adoption by the holders of medical records. I’d like to see that change to put the patient much more in control and in the middle of that if they desire it, or for patients who don’t desire it, to allow them to designate a family member or advocate on their behalf if they wish.
I also have a side wish to see the insulin pump industry focus on an application of pumps specifically for T2 and gestational diabetics. Managing that volume of insulin through an insulin pump designed for a T1 with dramatically lower insulin needs was not fun. Pregnant women need the best tools available to protect the health of their unborn children and themselves. It shouldn’t be such a guessing game.
What are you most excited about going in to the DiabetesMine Innovation Summit?
I am excited to learn — both from other patients and from the attendees in industry who can share ideas. As a more ‘normal’ T2 diabetic when not pregnant, I am very interested also in behavior change and motivation, as I think that also is a huge part of management for T2 diabetics, and so many people miss the mark in trying to help people change behaviors.
What would you most like to see the Summit achieve?
An open exchange and voice for patients to more directly build relationships with the people who have the power to make change for good in creating the health cloud and in behavior change. I’d love to be involved longer-term.
What do you hope to bring to the Summit yourself?
Honesty, humor and passion. I’m also happy to have any discussions with appropriate other patients, companies or organizations that would be helpful to the Summit (and I know I’ll learn from it myself!)
How do you think this might affect your life with diabetes going forward?
I hope that I might learn about new ideas, new technologies or new programs that at this point, might help me more with the behavior change I know I need to internalize, and to continue to find new ways to keep and manage my health data to share with my provider team!
Thanks, Julie! We love the perspective you bring about helping all PWDs internalize those positive behavior changes and be as healthy as they can be! We look forward to meeting you.