Ready or Not: Here Come the Data

Michael W. Painter of the Robert Wood Johnson Foundation asks if you are ready for the data explosion in health care, and announces the release of the Foundation’s Data for Health Advisory Committee report.

You are aware that your devices are tracking, recording and collecting the interesting and mundane about nearly every aspect of your life, right?

Your smartphone, for instance, can do that because it has an incredible array of sensors—including accelerometer, gyroscope, GPS, thermometer, barometer, light and proximity sensors. Plus, wearable devices with their own range of sensors are coming to us fast. Did you hear about that Apple Watch arriving at a store near you very soon?

Let’s not forget our health professionals: most of our health care teams now have “electronic health records” and there are or should be sharable data coming from them as well.

Are you ready for all that data?

We already have enormous amounts of data about almost every aspect of our lives, but we’re really just at the beginning. We’re also on a Moore’s Law escalation adventure with it. The sheer amount of data is increasing rapidly, probably exponentially, as computing power increases and our devices grow smaller and more ever-present in our lives. We’ll soon be carrying, wearing, driving, living with and implanting more and more powerful computers that will help us in unimaginable ways—assuming we can get to the data, turn it into useful information and then be able to act on it to improve our health and our lives.

Those could, of course, be some big leaps.

Last fall, the United States Department of Health and Human Services— in collaboration with the Robert Wood Johnson Foundation— released a second JASON report on building a national health data infrastructure. In this second report, the JASONs built on their prior observations about the opportunity all the new data creates. They emphasized the fact that we still do not have ready ways to access, translate, and use these data to improve health and articulated a vision of a digital learning health system in which we do.  The JASONs, as have others, lay out a vision that outlines and addresses many technical issues and barriers for our health data infrastructure.

But what about the public’s issues and concerns?

Last fall, RWJF asked people in five communities—Philadelphia, Phoenix, Des Moines, San Francisco, and Charleston, SC—to talk about their hopes, aspirations, worries, and concerns with using digital data to improve health. We asked a team of leading public health practitioners, physicians, health care researchers, health technology and informatics experts, consumers, and representatives of local government and health care systems to serve as advisers on this listening tour. The Foundation collaborated with the Office of the National Coordinator for Health Information Technology (ONC) as well.

A broad spectrum of individuals—from health care providers to researchers to community service providers to business leaders interested in using data to improve their health and the health of their communities—attended these five events. Attendees engaged passionately and vigorously, making it clear they are very interested in using data to improve both their individual as well as their community’s health. They 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?” These community representatives are balancing 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. And they want some measure of control over the use of this incredible resource. They resoundingly note that federal and state government’s current approaches to regulating and managing data are almost hopelessly out of date.

The Foundation will be releasing the advisers’ report, “Data for Health: Learning What Works” on April 2^nd. Watch for it. Please read it. Then, most importantly, start thinking about what you can do to bring this vision to reality.

Michael W. Painter, JD, MD, a distinguished physician, attorney, health care policy advocate, and 2003-2004 Robert Wood Johnson Health Policy Fellow, is a senior program officer and a senior member of the RWJF Pioneer and Eliminating Health Disparities Portfolios and the Value team.

Dr. Painter has reported no conflicts of interest.