A moment six years in the making — Aaron Neinstein, MD

Continuing the conversation about our latest Tidepool Mobile update, here's a clinician's perspective on the exciting possibilities in diabetes care now that people with diabetes can upload insulin data from Apple Health to their Tidepool account.

Aaron Neinstein, MD shares his thoughts on the moment he first saw MDI data and CGM data in the same place in Tidepool and what this means for the future of data interoperability in diabetes care.

I just had a “yes, we’re here!” moment that I’ve been waiting for for nearly six years. It was almost six years ago that, seeing the emergence of bluetooth connected asthma inhalers, and frustrated by the still silo’d, difficult-to-download diabetes devices, I asked why we could not accomplish the same for diabetes. The vast majority of people with diabetes relying on insulin injections did not, and still do not, use insulin pumps, meaning that attempts by the patient or clinician to advise on dose adjustments had to be based on partial, haphazard, manually collected data. This thought was not unique to me, and around the same time, Sean Saint and Companion Medical set out to develop a connected insulin pen.

Last week, I received an email from a patient asking me to review his data in Tidepool. I had seen him in the office a week prior as a new patient, making our best guesses at insulin dosing regimen, and sending him off with his Dexcom CGM and his Companion InPen. When I clicked over from his email to open Tidepool, I had a surge of excitement and a moment of stunned disbelief as I saw insulin bolus data alongside his CGM tracing. Finally, time-stamped, accurate, reliable data, from both a CGM and an insulin pen, available streaming to the cloud with no special effort by the patient.

For the last several years, I have been able to help make more well-informed clinical recommendations by having access to diabetes data from CGM and insulin pumps in one place in Tidepool. I have watched people with type 1 diabetes feel more empowered in their care and more educated about how to make their own insulin dose and regimen adjustments. The doctor is not in charge. The doctor is the coach, an expert guiding the person with diabetes through complex analysis, decisions, and everyday life-impacting issues. This all starts with having the data. It all starts with making access to the data easy, seamless, and connected. It starts with putting the patient in control of their data and who it is shared with.

I sat there, looking at my patient’s CGM tracking and insulin bolus information, and after a few minutes, sent him an email reply with a few of my thoughts and insulin regimen recommendations. “Maybe we should ease off on both the basal insulin dose and the carbohydrate ratio. Let’s cut them back by 10% each.” Up until that moment, without a person painstakingly creating a handwritten logbook, writing down every BG number and insulin injection, taking a photo of it, and emailing it to me, I could never have provided such a quick, informed, seamless (and remote!) recommendation for a person using an insulin pen. Moreover, as CGM has become more widespread, manual logging is no longer reasonable. So, this was an incredible moment in the history of diabetes care.

At the same time, it felt so… obvious. And it is true, in 2019, it would be easy to see this reality and take it for granted. But, there have been numerous conscious, even brave, decisions, as well as technological advancements, to lead us to this point. Tidepool led the way by demonstrating the value of combining all diabetes device data, regardless of manufacturer, into a single platform and visualization tool. The #WeAreNotWaiting movement created a powerful, persuasive, singular voice advocating for data rights for people with diabetes. Smartphones became ubiquitous, and then Apple created a healthcare platform on their smartphones, Apple HealthKit, with a data model that accepted relevant health data and empowered patients with control of their data.

Numerous BG meter companies decided to connect their data to Apple HealthKit, with Dexcom becoming the first - and, as of this writing today, hint, hint, cough, cough - still the only CGM device maker to do so. Dexcom then enabled direct connectivity from CGM transmitter to smartphone, eliminating the need to carry a separate receiver device. Companion Medical was the first to build and commercialize a connected insulin pen that sends dose information to the smartphone. Companion then decided to enable insulin dosing data to be written into Apple HealthKit. Every single one of these companies, as many have in the past and many still do today, could have chosen a different route, could have decided to lock patients into their proprietary data ecosystems, and effectively lock them out of their own data.

Even more exciting, this is just the beginning, with many possibilities to improve care and improve people's’ lives still in front of us. Electronic health record data is increasingly available to patients via open APIs, meaning that a patient can aggregate and control not just her BG and insulin data from diabetes devices, but also her related health data, like blood cholesterol or urine microalbumin results. A person can then choose to share these data with an application or service provider of her choice, which could be a family member or friend, a new doctor’s office, a digital coaching service like Omada, Livongo, or OneDrop, or increasingly soon, decision support algorithms that will make automated recommendations.

The continued advancement and success of this emerging interoperable ecosystem (nearly 1,000 words about interoperability, and this is my first use of the word!) depends on new and existing device-makers to follow suit and enable open connectivity; it depends on the emergence of useful apps, tools, and services that provide value to patients; and it depends on these tools and services providing transparency into their security and data privacy practices so that patients can trust that their data is being used for their own benefit.

-

Aaron Neinstein, MD, is Assistant Professor of Medicine at the University of California, San Francisco, and Director of Clinical Informatics at the UCSF Center for Digital Health Innovation. He was on the founding team of Tidepool and is an advisor to Steady Health.