Doug Fridsma, M.D., is a passionate guy.
A former chief science officer for ONC, Frisdma joined the American Medical Informatics Association (AMIA) in 2014 as president and CEO, telling SearchHealthIT in an interview at the time that he was looking forward to being back with his “tribe.” Fridsma also holds a doctorate in biomdedical informatics.
Last week, Frisdma took center stage back at his old agency’s annual meeting in Washington, D.C. with an articulate plea, or perhaps even demand, for patients to be able to obtain all their health information in electronic form.
The setting was a session on consumer access to health data and the ONC’s “Interoperability Pledge.” Dozens of EHR vendors, healthcare providers, health information exchanges and other healthcare organizations have committed to the pledge as part of the agency’s campaign against information blocking.
“It is unconscionable that in 2016 most patients are unable to obtain their entire medical record unless they print it out,” Fridsma said, according to the text of his remarks provided by AMIA.
Fridsma said healthcare has lagged behind other fields in terms of consumers’ ability to get and use information. He added that while progress has been made in recent years with health information sharing technology such as patient portals and ONC’s Blue Button initiative, it is not enough.
Fridsma asserted, however, that patients now have a right to an electronic copy of their health records under HIPAA. He cited guidance from the Department of Health and Human Services’ Office for Civil Rights clarifying that most providers should be able to provide health data electronically, and must do it with 30 days upon request.
But Fridsma said these policies, which were accelerated by the HITECH Act of 2009 and the meaningful use program it spawned, have resulted in only “slivers” of information for patients.
He said patients have a right to all their health information, not just that which CMS defines in meaningful use or what ONC’s certification program deems necessary for EHRs.
“AMIA believes if the information is stored electronically, patients are entitled to their entire medical record in an electronic format, and not just a summary record or the limited data that a vendor chooses to make available via portal or API,” Fridsma said. “Patients deserve more than PDFs, and the benefits of digitizing healthcare will only be realized when patients — and providers — have fluid, portable data.”
Specifically, Fridsma called on the federal government to remove what he called a “prohibition” in the EHR certification process that restricts the use of unstructured data, such as free text notes and other unstandardized clinical documentation.
He said the provision was originally intended to prevent unstructured data overload, but is no longer needed. It has also impeded interoperability, he said.
By removing the prohibition and allowing use of the full suite of HL7’s Clinical Document Architecture (CDA) templates aligned with the Fast Health Interoperability Resources (FHIR) standard will result in more ways to exchange health data, Frisdma said.
“The federal government has played a vital role and the final piece is to enable patients to have complete access to a “full extract” of their health data,” he concluded.