Sharing our personal health data – for good

The Flex by Fitbit serves as an electronic coach.

The Flex by Fitbit serves as an electronic coach. 

Health privacy can, at times, be at odds with a major cultural shift happening in healthcare: a demand for greater transparency.

The Health Data Exploration project is another example where sharing trumps privacy.

The Robert Wood Johnson Foundation – in collaboration with several California schools – aims to convince consumers to share the personal health data that’s being generated from an avalanche of apps and wearable devices like Fitbit.  

The question behind the Health Data Exploration project is how to harness that data, and do something other than make money off of it.

“With these technologies, we can get to a space where we are getting more realistic data. It’s capturing that everydayness of heatlh," says Matthew Bietz with the University of California Irvine, and one of the project’s lead investigators.

Bietz says the data would allow researchers to look at how stress affects eating, or how caffeine impacts sleep, on a scale that’s currently impossible.

This project will launch a research network that helps link businesses and their consumers with researchers.

University of Pennsylvania Law Professor Anita Allen says before consumers share their data to help solve some of healthcare’s most pressing questions, consumers must know they will be protected.

“Like it or not, some employers might find out information about us and use it against us when it comes to making hiring decisions,” she says.

“Are you a smoker? Are you overweight? Do you have diabetes? Do you have an irregular heart beat? These kinds of things might be used to our disadvantage.”

Bietz agrees that one of the trickiest tasks ahead is figuring out how to best protect consumer privacy.

Though, if done correctly, Bietz is convinced that “we could actually say new things about connections between the way we live and our well being.”

About the author

Dan Gorenstein is the senior reporter for Marketplace’s Health Desk. You can follow him on Twitter @dmgorenstein.


I agree to American Public Media's Terms and Conditions.
With Generous Support From...