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Health Data Outside the Doctor’s Office

Dec 2, 2014, 9:46 AM, Posted by Jon White, AHRQ , Karen DeSalvo, HHS/ONC, Michael Painter

A man rides a bike, with a child on a bike kid trailer behind him. "... if a city wants to plan bike infrastructure, they could invest millions in conducting studies into where bike lanes should go, or they instead could quickly access information generated by bikers, such as Map My Ride or Strava, to see where people are actually riding."

Health primarily happens outside the doctor’s office—playing out in the arenas where we live, learn, work and play. In fact, a minority of our overall health is the result of the health care we receive. If we’re to have an accurate picture of health, we need more than what is currently captured in the electronic health record.

That’s why the U.S. Department of Health and Human Services (HHS) asked the distinguished JASON group to bring its considerable analytical power to bear on this problem: how to create a health information system that focuses on the health of individuals, not just the care they receive. JASON is an independent group of scientists and academics that has been advising the Federal government on matters of science and technology for over 50 years.

Why is it important to pursue this ambitious goal? There has been an explosion of data that could help with all kinds of decisions about health. Right now, though, we do not have the capability to capture and share that data with those who make decisions that impact health—including individuals, health care providers and communities.

The new report, called Data for Individual Health, builds upon the 2013 JASON report, A Robust Health Data Infrastructure. It lays out recommendations for an infrastructure that could not only achieve interoperability among electronic health records (EHRs), but could also integrate data from all walks of life—including data from personal health devices, patient collaborative networks, social media, environmental and demographic data and genomic and other “omics” data.

This report, done in partnership with the Agency for Healthcare Research and Quality (AHRQ) and the Office of the National Coordinator for Health Information Technology (ONC) with support from the Robert Wood Johnson Foundation, comes at a pivotal time: ONC is in the process of developing a federal health IT strategic plan and a shared, nationwide interoperability roadmap, which will ensure that information can be securely shared across an emerging health IT infrastructure.

Data sharing is a critical piece of this equation. While we need infrastructure to capture and organize this data, we also need to ensure that individuals, health care professionals and community leaders can access and exchange this data, and use it to make decisions that improve health.

Initiatives like Blue Button and OpenNotes are already empowering patients and allowing them to take a more active role in their care. But giving individuals access to integrated streams of data from inside and outside the doctor’s office can increase the ways in which people engage directly in their own health and wellness.

Broadening data beyond the four walls of the doctors’ office will give health care professionals a more holistic view of their patient’s health. Sharing that data among members of the health care team will also lead to greater care coordination. Ensuring this data is used in meaningful ways will of course require training our health care workforce to a higher level of quantitative literacy.

Efforts now under way like County Health Rankings guide community leaders in setting priorities for improving health. With access to more data, communities can make faster, smarter decisions that support health—creating healthier homes, schools, workplaces and neighborhoods. For example, if a city wants to plan bike infrastructure, they could invest millions in conducting studies into where bike lanes should go, or they instead could quickly access information generated by bikers, such as Map My Ride or Strava, to see where people are actually riding.

While there are an enormous number of uses for the data that we can imagine and many more we cannot yet anticipate, it will be vitally important that we all make every effort to protect the privacy and security of these data. The report highlights numerous ways to protect the data in ways that benefit health and wellness, while also prompting accelerated innovation.

We’re excited by the potential to take this emerging data and turn it into useable information to build a Culture of Health—a nation where everyone has the opportunity to live longer, healthier lives.

We encourage everyone—consumers, providers, employers, purchasers, health IT developers and others—to take a look at the report and share your comments below. We look forward to hearing from you.