Like crawling through broken glass

Howard Look


Imagine a world where you own a digital camera, but you are forced to use the software that comes with the camera in order to access the pictures. Worse, if you want to share the pictures with Grandma, you have to give her a proprietary image viewer in order to view the camera’s proprietary image format. 

We would never stand for that, right?

Now imagine that you have type 1 diabetes. You live with a life-changing chronic disease that demands constant attention. Your pancreas has stopped producing insulin, so in order to survive you must administer precise doses of insulin throughout the course of the day. Even a little too much and you are subject to brain-crippling hypoglycemia or worse, a seizure or coma. Not enough insulin and you risk long-term complications like blindness, amputation and kidney failure.

You use an insulin pump to help deliver precisely-controlled amounts of the life-saving drug. You use a continuous glucose monitor to help you closely monitor your blood sugar and avoid those potentially devastating lows and highs. But the software that comes with these devices is too hard to use. It doesn’t work on a your computer, you can’t easily share it with your doctor or caregiver, and you can’t see your data in one place. Even if you want to be an engaged patient, you can’t. Despite clear evidence that engaging with the data improves outcomes, 60% of T1D patients never download their insulin pump data, and only 6% look at their data once per month.

In two short years, Tidepool has changed how the diabetes industry thinks about patient access to their personal health data. As a non-profit, Tidepool has successfully engaged with nearly every diabetes device maker; their devices can now be read through Tidepool’s open source platform. By taking a non-threatening, open platform approach, Tidepool is demonstrating how liberating data from device is both better for patients and better for the overall industry.

As a “Lean Startup,” Tidepool has continuously iterated, focusing on patient, caregiver and doctor engagement and creating intuitive, actionable software, Tidepool has shown that patients do want to be empowered and engaged; they want to be exposed to those “teachable moments” that help them manage their disease more effectively.

By making it clear that patients own their data, and by giving them control over who has access to it and how they view and analyze it, Tidepool has enabled a whole new ecosystem of applications that will reduce the burden of managing type 1 diabetes.

By taking an open source, patient-engaged, platform-centric approach, Tidepool has demonstrated a new model for how device companies and the diabetes industry overall are thinking about providing better care. Instead of a proprietary mentality of “data silos,” Tidepool has caused data to liberated which in turn enable an ecosystem of better applications and experiences to emerge. The platform approach also enables an entirely new wave of research based on donated data. 

For the audience, the takeaways of this talk will be:

  • Patients own their health data, not the device makers that generate the data.
  • A non-profit approach that is non-threatening to industry is sometimes the better way to affect meaningful change.
  • An iterative, lean startup can very quickly develop and release new software that engage patients.
  • A platform-centric approach to healthcare creates an ecosystem of applications, leading to greater choice and engagement and new avenues of research.

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