Patient as Expert, Maker, and Collaborator: Nightscout

I recently gave a talk at TEDxDetroit, and this slide was the major take home of the presentation, about the future of healthcare:

But forget about the future. It’s right here in the present. Have you heard about Nightscout Project in the type 1 diabetes community?

Problems were identified by EXPERTS (patients and caregivers with type 1 diabetes), who were MAKERS in creation of the tools and technologies (the Nightscout Project), and who were COLLABORATORS (sharing tools, technologies, and knowledge through social media).

We were fortunate to have John Costik, type 1 diabetes dad and hacker, as a keynote speaker at the We #MakeHealth Fest this summer at the University of Michigan. In brief, his work started the whole movement. Frustrated with the current diabetes technology, he in collaboration with his wife Laura, created computer code that would allow them to pull glucose readings off of his son’s continuous glucose monitoring system into a real-time monitoring system. He tweeted about the code, connecting him with a group of programmers who were also caregivers and patients with type 1 diabetes, and together they have created tools and technologies (visual dashboards, wearables) to display the blood glucose readings in new and novel ways. They have shared their knowledge and tools with a global community through a private Facebook group called CGM in the Cloud, which has exploded in membership to almost to 7000 people in just 4–5 months, and now individuals with type 1 diabetes all over the globe are using the technology.

It was a COMMUNITY that made this happen, which represents the future of medicine:


My quote in the WSJ:

“I have a huge bet on there being many other diseases that can be helped by these new forces in medicine,” said Joyce Lee, a diabetes specialist and associate professor of pediatrics at the University of Michigan who researches design as it relates to health care. “It is not the new blockbuster drug. It’s not the newest FDA-approved device. But it’s the free hack that the patient came up with.”

To hear about the story in greater detail, check out his inspiring keynote speech here:

Check out the other keynote speeches by B the designer, Jose Gomez Marquez, and Andrew Maynard at the We #MakeHealth Fest. Please sign up for the mailing list and follow us on Twitter and Facebook!

I tweet and blog about health, technology, and participatory design as “Doctor as Designer”. For blogpost updates, sign up here.

A visual of the Nightscout system is shown below, courtesy of the WSJ.