Patient data access will kickstart PCAST exchange vision

By Mary Mosquera
02:31 PM

The Office of the National Coordinator for Health IT could include measures for the use and promotion of patient portals and direct access to their data in the next stage of meaningful use. Patient data could also be downloaded to a personal health record.

The portal could go a step further and give patients the option of receiving their summary information with tags that allow data to be broken down into smaller pieces or data elements and be shared as the first step toward a broad vision of health information exchange that a presidential commission outlined last year.

[HITECHWatch Editor Jeff Rowe asks: Is it enough just to "kickstart" the PCAST vision?]

An advisory panel has come up with exchange uses that link meaningful use and the report from PCAST (President’s Council of Advisors on Science and Technology), where they intersect at the importance of engaging the patient.

Many providers already offer patient portals. Providers are already required by law to give patients access to an electronic copy of their data, said Paul Egerman, software entrepreneur and co-chair of the Health IT Policy Committee’s PCAST workgroup.

“When patients start getting access to their information, like problem lists and medications, it’s like when you have to clean up for company. The data has to look right. When patients start looking at it, there’s pressure to make that happen,” he said.

[John Loonsk, MD, reviews PCAST – Part 3: A failure of information exchange?]

The gradual development of a universal exchange language (UEL) can start with the exchange of data elements from the patient clinical summaries in the Continuity of Care Record (CCR) or Clinical Document Architecture (CDA) standard formats.

“A UEL wrapper takes an entire transaction, like the CCD or CCR, and in effect wraps it in such a way so that it stays consistent. It doesn’t cause the data elements to change. The data elements within the CCR and CCD already have meta data associated with it,” Egerman said.

The committee’s PCAST work group, which was charged with analyzing the report, laid out exchange uses and examples that become progressively complex as they are tested to determine “what actually works” and to direct ONC how to put the report into practice, said Dr. William Stead, co-chair of the work group. He is also associate vice chancellor for health affairs and chief strategy and information officer at Vanderbilt University Medical Center.

Simple exchange, such as through the secure messaging of the Direct Project, works “when we know what we need to send and who we need to send it to.”

“That is different from being able to pull together all the information you need to make a clinical decision from whatever source,” Stead said.

PCAST suggests an Internet-style approach of doing search, Egerman said. “Put in a patient’s name and, say you wanted to search about a patient’s cholesterol count, it would tell you all the places that have that info available and view it,” he said.

It’s not a complete solution for health information exchange since there is still a need for transition of care documents and claims form transactions, among others.

“But it’s a vision of being able to search all EHR databases as if they were one all over the country and find information on a single patient,” Egerman said.

This model could make accessing information needed by providers for their clinical encounters much more efficient, said Dr. Neil Calman, a policy committee member and CEO of New York’s Institute for Family Health.

“What this does is build it from the recipient’s point of view in a clinical encounter in that it allows people first to see something in a basic and summarized way, but gives them the capability to drill down and continue to mine more info as needed in the course of a clinical encounter,” Calman said.

ONC can also use certification criteria to identify metadata standards that EHRs would have to be capable of performing for stage 2 transactions.  

PCAST review part 2: Technical elements of the vision. And his PCAST Review Part 1: The state of health information technology.]

The committee accepted the uses and methods described by the panels for how ONC can begin to roll out the PCAST recommendations at a meeting April 13.

Dr. Farzad Mostashari, the national coordinator for health IT, said the panel’s approach was “creative and smart in identifying how to move forward with the options available and yet makes concrete substantial progress in terms of a variety of future uses and finding a hook for starting somewhere, starting with sharing information with the patient.”

ONC has started examining if there are existing standards for the meta data elements that would be included in the universal exchange language.