Living with Type 1 Diabetes and Data Dysfunction

Data dysfunction creates unnecessary challenges for engaged patients trying to manage chronic conditions, like Type 1 Diabetes.

The highlight of WLSA’s recent Convergence Conference was the “Voices of the Patients’ panel. I had a chance to chat on video with one of the participants, Anna McCollister-Slipp, Founder and CEO of Galileo Analytics. Anna has had Type 1 Diabetes for 28 years and not only has difficult to control blood glucose, but also has eye, nerve, and kidney disease complications as well.

She gave me a sense of what the medical part of her life is like. She takes 14 medications per day. She has four prescription devices, including an insulin pump. She also uses four consumer devices (two apps, a blood pressure cuff, and a digital scale). And as if this wasn’t enough, last year she had 63 different doctor appointments. For all of you out there who have struggled with making a single appointment, driving and parking, waiting in the waiting room, waiting in the exam room, and then trying to squeeze everything into the 15 minute appointment, multiple that times 63 and you will have a sense of the impact on Anna’s life.

Anna is an highly engaged and motivated patient. She understands Type 1 Diabetes and knows what she needs to do to optimize her own health in consultation with her physicians. Her problem is what I will call damn data dysfunction.

Three of her four prescription devices generate electronic data in structured format. But the data is in different places, in different formats, and nearly impossible for her to download onto her Apple computer so that she can actually USE it. She says if she is able to download it, “it looks like the platform and interface was built in Windows 95.” It is not very useful or usable and it is a lot of time, work and expense to be able to get it downloaded at all.

Because of her complex medical condition, Anna would really benefit from being able to see data trends and to correlate them with her activity and lifestyle so that she can understand how it is affecting her health. But she can’t. There is lots and lots of data, but she can’t do anything with it because it is separate and silo’d. That is damn data dysfunction in a nutshell.

The problems is, according to Anna, the device makers are not making their data protocols public, not releasing APIs so developers can create better, more usable tools, and not making the data available in a way that consumers can easily use it. “The lack of interoperability and lack of cooperation amongst device manufacturers” are a hinderance to her (and other patients’) ability to stay healthy and maintain their life.

Kudos to Anna McCollister-Slip for being a data activist. It is way past time that device manufacturers and the rest of us in the medical system provide meaningful, useable data to patients so they can take better manage their own care. The medical community has been whining for years about the need for patients to be engaged in their own care. Well, now is the time to meaningfully support them by helping them get access to their data so they can get the job done. Thanks, Anna for all that you do.

This video was filmed at the Wireless-Life Sciences Alliance’s 2014 Convergence Summit in San Diego.

Patricia Salber MD, MBA (@docweighsin)
Patricia Salber, MD, MBA is the Founder and Editor-in-Chief of The Doctor Weighs In. She is also the CEO of Health Tech Hatch, the sister site of TDWI that helps innovators tell their stories to the world. She is also a physician executive who has worked in all aspects of healthcare including practicing emergency physician, health plan executive, consultant to employers, CMS, and other organizations. She is a Board Certified Internist and Emergency Physician who loves to write about just about anything that has to do with healthcare.

9 COMMENTS

LEAVE A REPLY


All comments are moderated. Please allow at least 1-2 days for it to display.