Building the Information-Rich Culture of Health

Aug 20, 2014, 10:36 AM, Posted by

Elderly patient electronically checks information about medication using bar code reader.

What if your mother wanted to take some ibuprofen for her arthritis, but didn’t know if it would interact adversely with her other medications?

No problem, right?

She could whip out her smartphone and launch an app that connected to her local health information exchange. Within fractions of a second, the exchange would verify her identity, locate the computer storing her electronic health record (EHR), and shoot an answer back to her.

This scenario is just one example of the many ways that having timely access to health information could contribute to health. It could, that is, if the nation had an agreed-upon way to organize data about health and health care in ways that made it easily accessible and usable while still secure and protected.

But for now, we don’t.

There are many more ways in which we could all benefit if things were different. What if a community’s planning department wanted to know where building a new bike path would provide the most benefit and could call up on an app the most common cycling routes that citizens already use? Or a public health department could immediately tap into data about who was showing up in clinics with flu-like symptoms as it sought to pinpoint a local disease outbreak?

You get the picture. Health information—our ability to organize it, access it, and actually use it, is a critical part of building a Culture of Health.

The nation is on its way to building systems that could make all these data uses possible, but it isn’t as far along as it needs to be. Rather than having the data structures in place that would allow the agile uses these examples suggest, it’s as if, at least for the type of clinical data collected on EHRs, the nation had installed a bunch of freestanding fax machines that could somehow send faxes, but never receive them.

That was the conclusion of a Robert Wood Johnson Foundation forum on the nation’s health information infrastructure held in Washington, D.C., on August 7. (See the videos: Part 1 and Part 2.)

On the one hand, the United States has made enormous progress in health information technology (HIT) adoption since enactment of a 2009 federal law aimed at spurring HIT adoption.

The latest RWJF annual HIT adoption report—“Health Information Technology in the United States: Progress and Challenges Ahead, 2014” shows that almost 3 in 5 U.S. hospitals had at least a basic EHR in 2013. In 2012, about 2 in 3 eligible hospitals were receiving incentive payments from the government for meeting initial “meaningful use” criteria of the technology, up from fewer than 1 in 2 hospitals in 2011.

What’s more, nearly half of U.S. physician practices had adopted at least a basic EHR, double the number that had one in 2009. No other large nation has made so much progress in HIT adoption so quickly, one of the authors of the report, Harvard’s Ashish Jha told the forum.

But looked at from another perspective—just how much are health care professionals really exchanging health care information—the accomplishments to date have fallen short. Only one in 10 hospitals are providing patients with access to their health information, for example. Only about half of hospitals use EHRs to identify gaps in care. Important parts of the nation’s health care continuum—particularly small physician practices and medical specialists—are far less likely than hospitals and other providers to have adopted EHRs. And when it comes to exchanging health information among providers—for example, sending lab results from one hospital or health system to another when a patient is transferred—only about 1 in 3 hospitals are actually doing it.

Organizing health and health care information so that those who need it can access and use it, quickly and easily, while still protecting patients’ privacy, is critical. That’s why, in 2013 RWJF collaborated with the Agency for Healthcare Research and Quality and the Office of the National Coordinator for Health Information Technology (ONC), and asked a prestigious group of the nation’s scientists and academicians to tackle the issue. The group, known as the JASONs has been advising governmental agencies, such as DARPA, on science and technology matters for more than 50 years. The report it produced, “A Robust Health Data Infrastructure,” represents one of the first times—if not the first time—that federal agencies have asked the JASONs for assistance with a health-focused question.

The report recommends that ONC prompt the development of an overall software architecture that could make robust health data exchange possible nationwide. The architecture would be based on “open” standards for collecting data. Developers of EHRs would have to publish so-called application program interfaces—the directions for how various software components can connect with each other. Such a system would be similar to the arrangement that allows millions of developers to create apps that connect to proprietary smartphone software developed by an Apple or Samsung.

The JASON vision frames the big technical data infrastructure challenges, but emphasizes that those are surmountable. It does not, however, deal specifically with many of the other barriers to such an effort—including legal, economic, societal and even cultural ones. Those other challenges are likely the most difficult to overcome.

Speaking at the RWJF forum, National Coordinator for Health Information Technology Karen DeSalvo called the JASON report “a gift to the nation” for proposing a pathway to a health information architecture. Arguably, if we cannot find ways to harness the tremendous power of the health and health care data that we are collecting, we will not be able to attain that vision. Now, the nation needs focused, intense work to promote and tend the development of system that can deliver on the promise of an information-rich Culture of Health.