Despite the widespread adoption of electronic health records, the integration of healthcare data remains a critical challenge for the industry as it strives to achieve interoperability, said Karen DeSalvo, MD, National Coordinator for Health IT.

While ONC is pleased with progress in implementing EHRs, its next challenge lies in pushing for data integration, DeSalvo said at ONC’s annual meeting in Washington.

“We still have so much work to do as an ecosystem to have data that is interoperable, not just systems that are interoperable,” she said. “We want to move to a place where we’re working off of the same language so that there’s not the added work and expense and sometimes frustration of not having federally recognized national standards, but also creating opportunities to really advance new kinds of standards that can advance the field.”

The ONC chief pointed to HL7’s Fast Healthcare Interoperability Resources (FHIR) as an open health data standard that offers a promising approach to meeting the demand for semantic interoperability and minimizing the need for metadata translation services. She said FHIR seeks to address the lack of a universal terminology standard that continues to be a major barrier to communication between different EHR systems and the ability to derive clinical meaning from data.

“This is a process moving forward that’s going to require a partnership with the private sector and all of our federal partners,” said DeSalvo, who added that the private sector in particular has stepped forward to mature FHIR as a standard.

DeSalvo added that electronic health information comes not just from EHRs, but also from wearables, the Internet of Things and mobile healthcare technologies.

“It’s coming from so many sources today, compared to where it was in 2008 when we started measuring,” she said. The challenge now “is how to bring that information together to make it usable and actionable for everybody who wants it.”

At the same time, DeSalvo made the case that beyond technology, true data integration will require a change in the culture of data sharing in the healthcare industry.

The industry has long thought about data “as something that we have to hold tightly onto,” she lamented. “It’s built into our DNA of medicine that we want to hold data, and we’re worried about exposing it because we don’t want to violate HIPAA or have challenges around privacy.”

However, according to DeSalvo, consumers are expecting providers to share their data on their behalf, and HIPAA explicitly allows it.

“Data should flow by default. Yes, securely and privately, but it needs to do so on behalf of the consumers,” DeSalvo said.

Likewise, she said there needs to be a better business case for sharing data. In particular, DeSalvo argued that financial incentives will drive healthcare systems to share clinical information as they begin to see it as a critical requirement for enabling population health management and the rapidly approaching transition from fee-for-service to value-based care reimbursement.

“We’ve spent very much of this effort on creating a payment case in the healthcare environment,” she said. “But, you heard earlier today about researchers who are creating an additional business case for data sharing, one in which we can all see the acceleration of science—a revolution on the forefront.”

Kathleen Sebelius, former secretary of the Department of Health and Human Services, joined DeSalvo on stage at the ONC annual meeting to offer her view of delivery system reform and the important role of data sharing.

“The passage of the HITECH Act in 2009 created a platform, but it didn’t solve the problems,” said Sebelius, who oversaw the implementation of the HITECH Act from 2009 to 2014. “Delivery system reform is about getting a better bang for our buck, spending money more wisely, and using data for what really works and what outcomes can be measured to reward providers for positive health results.”

Sebelius believes that what the HITECH Act achieved was to digitize healthcare data into a more useful form that lends itself to population health management. That has created an environment in which payers could begin to align around value-based care payment models. “That’s really what’s going on now,” she added. “That could not have been realized without the HITECH Act.”

In addition, Sebelius concluded that the “consumer’s voice in healthcare is finally going to be heard,” which she described as a “real breakthrough” for delivery system reform and patient-centered care. “Having people begin to get more information, see it more transparently, and then ask questions and begin to voice their concerns and issues,” she said is a dramatic shift that’s based on what patients and their families want to better control the care they receive.

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