What if I asked you to sit for hours with others from your community to talk about using the giga-bytes of data from your devices and other sources like electronic health records to help improve health—your health and the health of your community?
Would you play? Would you do that?
Or would you blanch, shake your head incredulous, yawn with boredom and possibly run in the opposite direction?
Well, your colleagues in five cities, Philadelphia, Phoenix, Des Moines, San Francisco and Charleston, SC, played that very game with the Robert Wood Johnson Foundation and members of our Data for Health advisory committee along with the National Coordinator for Health Information Technology and members of her staff.
Boy, did they play.
Last fall in our initiative, Data for Health, the Foundation asked people in those places to spend an entire day talking with us about their hopes, aspirations, worries and concerns with using digital data to improve health.
Honestly, we weren’t at all certain people would play this particular game. We understood—in fact some people told us—that this discussion could seem turgid, distant, maybe even a boring academic hypothetical discussion.
That was not the case.
Turns out it was very easy to draw people into this conversation. People attended and engaged passionately and vigorously. It was a powerful thing to behold.
These people were very interested in using data to improve both their individual as well as their community’s health. They also asked pointed, hard questions about the value proposition: what’s in it for my community and me? How can we bring that value to our communities? They very sensibly want to balance tough concerns about things like sharing, control, trust and confidence. They want to share and use the data. They also want to make sure that the data are safe and secure. They want some measure of control over the use of this incredible resource. They resoundingly noted that our current 20th century approaches to regulating and managing data are almost hopelessly out of date.
They quickly understood that their many devices and the array of powerful sensors those devices contain are tracking, recording and collecting a huge amount of data about their lives. They also intuitively understand that we’re on a rapidly accelerating trajectory with more and more powerful computers collecting more and more data.
People readily understand that these data issues are not a game. They know that we’re all creating a potentially invaluable health resource that if we manage it correctly could be instrumental in helping us create a hopeful, healthy future. They also recognize that we could easily miss or delay this once in human history opportunity.
The Foundation will be releasing the advisers’ report, “Data for Health: Learning What Works” on April 2nd. Watch for it. Please read it. Then, most importantly, start thinking about ways to turn this data resource into useful information that all of us can use to build that healthy future for everyone.
Michael W. Painter JD MD is a Senior Program Officer at the Robert Wood Johnson Foundation