HITPC focuses in on data infrastructure report

The JASON report on creating a robust health data infrastructure released in April offered expert analysis but also raised numerous questions, according to a discussion during the June 10 Health IT Policy Committee meeting.

The current lack of interoperability is a major impediment to the unencumbered exchange of health information and the development of a robust heath data infrastructure, said P. Jon White, MD, director of health IT for the Agency for Healthcare Research and Quality. Interoperability issues can be resolved only by establishing comprehensive transparent and overarching software architecture for health information.

Health IT architecture principles dictate that the patient owns the data but right now, the person who generates the record owns the record, said White. “The principle is ignored at our peril. There is growing sentiment that not only do patients have rights to copies of their information in electronic form but that they also have some standing with regard to their data and how it is used.”

The report includes a migration path from legacy EHR systems. That could be read to indicate that we need to move away from legacy systems, White said, but “we need to figure out how to enable the interoperability to achieve the kinds of capabilities and resources that we’re not getting in current EHR systems.”

White said the Office of the National Coordinator for Health IT should define an architecture for health data this year and that architecture should be supported by openly developed, published and tested APIs.

The recommendations laid out in the JASON report are ambitious, White acknowledged. “A lot of it doesn’t reflect a deep understanding of the way systems are currently developed, deployed or architected. At same time, there are a lot of good goals and aspirations here.” He said the private sector is working on certain aspects but not necessarily in a coordinated way.

The report has a limited scope, said HITPC member David Lansky, and raises questions of whether this is an opportunity to include dimensions like public transparency of health data, public safety issues of data, transparency issues in general among the use cases that the report and its architecture should speak to. “The architecture seems to apply mostly to clinical care environments and not per se to the longitudinal linking, aggregation and computation of data.”

The report shows “a fundamental misunderstanding of the role of provider EHRs,” said HITPC member Deven McGraw. “The ability to create a more open environment for data that is provided to the patient for the patient to use could, in fact, be the way to get the longitudinal record to enable more robust data sharing both for care purposes as well as for analytics.”

Given the architecture already created, “it’s hard to do a hard right turn,” McGraw said. “It should be less difficult to do that in a patient-facing environment where tools are built more on the software architecture recommended in this report. There may be an opening to freeing the data in responsible ways through the patient access route.”

The HITPC is forming a joint task force—both standards and policy--to respond to the recommendations in the JASON report.