The long and winding road to patient data interoperability

Most of the time when Dr. James Tcheng gets a new patient from outside of Duke Health, he starts with a bundle of paper. After his secretary receives a patient's records—either directly from another doctor's office or after a request is faxed—and opens them, Tcheng goes through the information, with a sheet of 8½ x 11 paper at his side for taking notes. He starts, usually, with the summary notes. Sometimes, almost all of what he reads is irrelevant. But he must go through everything nevertheless, making sure he misses nothing.

"It's one of the things that causes me to turn over in bed at night," said Tcheng, an interventional cardiologist at Duke Health. "I wonder, did I miss something? What should I have been looking for? What wasn't even said?"

Interoperability, that oft-promised, long sought-after state of data fluidity, has yet to fully arrive in patient records. Too often, patient data move only after someone—a patient, a nurse, a doctor—makes a few phone calls and faxes, stumbling a few times.

Better standards, alliances among vendors, and new interdependent technologies promise to change that, making data travel with patients as they move through the healthcare system, thereby reducing the burden on providers and achieving the patient-centric part of the triple aim.

But those changes may be more theoretical at this point than actual, and they've yet to be adopted across an industry whose members are trying to keep up with new software and standards—standards that themselves are evolving to become more useful. After all, interoperability isn't just the ability to transmit information, it's the ability to use the information, too.

Just 6% of providers surveyed by KLAS Research said information they get from outside organizations is reasonably easy to locate within their workflow and "significantly benefits patient care," and less than one-third said they often or almost always can access data from different electronic health records. Troubles arise when information is outside the electronic health record, when the formatting is clunky, and when information isn't available when it's needed.

"We hear pretty regularly that clinicians are frustrated with the amount of time they're spending documenting instead of taking care of patients," said Bob Cash, KLAS' vice president of provider relations.

Part of that frustration stems from the fact that health data don't often travel as discrete pieces of information but, rather, as entire chunks. "Right now, EHRs are simply very sophisticated systems for managing documents rather than being purveyors of information captured as data," Tcheng said.

Making data meaningful

When EHRs do successfully talk to one another and transmit data, it's not just the conversation that matters, it's how the conversation is structured. In other words, it's one thing to be able to transmit data, it's another to be able to transmit it in a way that makes the information meaningful and actionable for providers.

To make a record easily understandable, file formats must be standardized. And they are, to a degree: The Consolidated Clinical Document Architecture (C-CDA) standard—which can be used to fulfill the meaningful use Stage 2 requirements—is essentially a collection of templates (along with the requisite coding and framework), including one for documenting a patient's allergies, medications, problem list and other information, including both structured and unstructured data.

In the end, the documents are sometimes not terribly unlike well-organized PDFs. So providers are often left to wade through pages and pages of text to find what they're looking for. "They're big and unwieldy," said Micky Tripathi, CEO of the Massachusetts eHealth Collaborative. Some providers don't even look at them.

"We need to break away from the document paradigm of medical records and move toward semi-structured and structured information that actually has pieces of data managed as data itself rather than documents," Tcheng said. But, he said, "interoperability isn't just the ability to move a document from one EHR to another." When you do that, you still must know, for instance, to click on the tab in the EHR for "other information." And that's just another click in the seeming infinitude of clicks providers are already making.

If the Fast Health Interoperability Resources standard, or FHIR, were widely adopted, that could ease the burden, making interoperability less about exchanging documents and more about exchanging discrete data points that can be studied and analyzed by both humans and computers. FHIR, which is vendor-neutral, allows people to transmit both documents and smaller pieces of data.

"FHIR is on a trajectory to develop a platform which makes interoperability possible in health systems around the world," said Dr. Charles Jaffe, CEO of standards organization Health Level Seven International, which developed FHIR.

It portends a time when data aren't locked in separate documents in separate EHRs—or in separate file folders—but are instead fluid, moving in discrete elements with patients as they go from provider to provider.

"Part of the issue now is hospital and health systems feel it's all their records, when really we're just stewards," said Dr. Thomas Moran, chief medical information executive for Northwestern Memorial HealthCare in Chicago. "The patient still exists outside of the hospital and goes elsewhere, and the patient needs to be able to share their information easily no matter where they go."

Helping data move

FHIR and similar projects are necessary because data do not move in pieces today. Instead, information is often trapped in various silos, and when it does move between them, it's in unwieldy documents.

It's not like this in many other parts of life. "In the financial world, in the retail world, in the social world, data is not held hostage for the benefit of someone else," said Kerry McDermott, vice president of public policy and communications at the Center for Medical Interoperability. "You're kind of the digital center of the universe, because if companies don't treat you that way, you're going to abandon them, because you have a choice."

Often, providers and others wonder why EHRs can't be more like ATMs. The answer, Jaffe said, is that "medicine is more complicated than an ATM."

EHRs and standard document formats are certainly steps toward interoperability. Though fax machines are still exceedingly—and shockingly—common in healthcare, records are increasingly stored on servers, not shelves. The government essentially required the use of EHRs with the CMS' meaningful use program, which mandates, among other technological requirements, that providers electronically transfer patients' summaries of care for at least half the transitions of care.

"Meaningful use and the rules have pushed the market and healthcare systems to do things in a different way and drive toward that culture of sharing," said Lana Moriarty, director of the Office of Consumer eHealth at the Office of the National Coordinator for Health Information Technology.

That will help ease the burden on providers, which is currently significant: Primary-care providers now spend about equal time—three hours or so—on office visits and "desktop medicine," according to a recent study in Health Affairs.

That proportion may change now that the ONC is working on implementing the 21st Century Cures Act, enacted last December. Notably, the act contains a prohibition of "information blocking," as well as requirements for EHRs to transmit, receive and accept data.

Eric Helsher, Epic Systems Corp.'s vice president of client success, worries that more regulation might increase the already significant burden on providers—the very thing the ONC and others are trying to avoid. For one, the language about information-blocking is vague enough that it might lead to "frivolous claims," he said. As for EHR certifications, in the past "well-intended requirements created unintended consequences that lead to burdens on providers."

He thinks the government should let the private sector solve the problem. Epic, Cerner Corp. and other EHR vendors say they're working on it. They've formed groups such as Carequality, from Sequoia Project (Epic is a founding member); and the Commonwell Health Alliance (Cerner is a founding member) to promote interoperability.

"We have a moral obligation to fix interoperability and not compete on that piece," Cerner President Zane Burke said. "Today the information doesn't flow very easily, and the obligation is on the patient to provide that information again and again." That can lead to multiple tests and bills. "If you can't get something easily, the easiest way to get it when you have the patient in front of you is to reorder it," Northwestern's Moran said.

Carequality and Commonwell recently began working together on interoperability projects, including tackling record location so that patients could be connected to their data from different sources. "We want to get to the point where clinicians just expect to see everything, local and outside, and they don't necessarily have to know the difference anymore," said Dave Fuhrmann, Epic's vice president of research and development.

For that to happen, providers—or their software—would have to know where to pull records from. Commonwell's record location technology—which creates a "virtual table of contents" that points to the locations of patient information—is one way. Another method—that some see as the interoperability solution of the future—is blockchain, a technology borrowed from the financial industry's bitcoin.

In healthcare, blockchain could involve a super-secure "distributed ledger" of everywhere a patient has received care. Every time you get medical care, a record of your receipt of that care would be added to the ledger. The ledger, in turn, would point to places providers need to check to create a more complete medical record.

The blockchain is mostly an idea at this point; for the technology to be useful, it's not enough for the blockchain to simply point to where the data are. The data must be able to be transmitted—they must be interoperable.

When that happens, doctors will be able to be better at their jobs. "If it were all there in front of you," Tcheng said, "you'd spend a lot less time shuffling through paper or clicking on different tabs," he said. "You could spend more time actually thinking about what you're looking at."​