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Susannah Fox spoke Thursday at a health data summit hosted by Cambia Grove in Seattle. (GeekWire Photo / James Thorne)

As U.S. federal agencies work to define how healthcare data should be shared, Susannah Fox, the former chief technology officer of the Department of Health and Human Services, says it’s the little-known pioneers of biohacking who are showing what’s possible when people have access to their own health data.

“The quantified-self movement, I think of them as kind of like the Lewis and Clark of health data. They’re really out there mapping what’s possible,” Fox said at a health data summit hosted by Cambia Grove in Seattle on Thursday.

The term quantified self refers to a growing interest in turning measurements of the human body into sets of data in order to manage diseases or live longer. Adherents to the movement are known for pushing the boundaries of health data into unexplored territory, occasionally to extremes. The topic is the focus a Seattle-based podcast called How to Live to 200.

Fox’s star example of what’s possible when people take control of their own healthcare data is Dana Lewis, who built an artificial pancreas system (APS) that monitors her blood sugar level and gives her body insulin as needed. Lewis’ innovation inspired a movement: she founded an open source system called APS and leads a community of DIY diabetes patients who manage the disease with algorithms they designed outside of the medical establishment.

Dana Lewis, founder of the Open Source Artificial Pancreas, sporting her APS system. (GeekWire Photo / Todd Bishop)

Most health data is, by design, locked away where only a few people can find it. While that status quo protects patient privacy, it also means that many useful applications of health data have yet to be explored.

The result is that patients are frustrated, and regulators have responded by making changes. The Office of the National Coordinator for Health Information Technology (ONC) is in the midst of defining how a national exchange of health information might work.

Healthcare providers hold most of that data in electronic medical records. The problem, as Fox sees it, is that only a small part of a patient’s healthcare experience actually happens in a clinic. For people managing chronic conditions, their healthcare journey happens all day, every day.

At today’s event in Seattle, Fox urged people in the industry to “look for the hackers and cowboys and artists” and empower them. This support can give people like Lewis the “booster rockets” that will get people in power to notice them and take action, she said.

Listen to our podcast conversation with Lewis below:

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