An upcoming glossary of medical terms will ensure that something as simple as a computer labeling a patient as glucose intolerant rather than diabetic doesn’t slow treatment. But some IT professionals worry the list may not go far enough to adequately promote the seamless swap of patient data.
The glossary, also known as the U.S. Core Data for Interoperability set (USCDI), is part of an upcoming Department of Health and Human Services rule aimed at ensuring patients have better access to their health information. The list is designed to help health-care providers, app developers, and insurers more easily transfer patient data between one another.
Building a uniform health dictionary is necessary because computers need to speak the same language as sharing data between health providers becomes more common, David Blumenthal, president of the Commonwealth Fund and a former official in the HHS Office of the National Coordinator for Health Information Technology, said.
“Standards say to the people using computer A that if you want to be interoperable, you have to use these definitions,” he said. “For example, if you send a patient file from Boston to Palo Alto, Calif., that facility will get the information, understand it, and be able to take it in electronically into their files and place it where it belongs.”
The pending dictionary, built by the HHS’s Office of the National Coordinator for Health Information Technology, would replace the 2015 vocabulary of medical terms. The new version will add patient addresses and phone numbers, clinical notes such as progress and procedural statements, pediatric vital signs, and the data’s author and origin.
However, the dictionary as proposed leaves out useful information like voice files, unstructured lab reports, and next generation sequencing tests that physicians may need to ensure correct treatment, said Jeffery Smith, vice president of public policy at the American Medical Informatics Association, a trade group representing physicians, nurses, scientists, developers, and other health professionals.
“You need to set a policy that has the expectation that if that data is about me and that data has a need to go from A to B, then electronic health record vendors should be expected to move that data,” Smith said. “If the expectation is that data elements only go from one place to another, we’re leaving a lot of data on the table that could be important to patient care.”
The new set of data definitions will constantly evolve over time, and what’s been proposed is the first version. But the health tech industry and federal regulators have to agree on this first building block under the rule to avoid conflicts within the industry and prevent losing valuable health records.
Being on the same page will help health tech match the right health records to the right patient. That could allow patients with emergency illnesses, like the coronavirus, to connect to doctors anywhere, according to Cynthia Fisher, founder and chairman of PatientRightsAdvocate.org.
“Having readily available access to patients’ complete health information to share with any physician or care team member will improve diagnoses and health outcomes, and ultimately save lives,” Fisher said.
But the health tech industry won’t be completely sold until the right questions are answered before the final rule goes in effect—which could be two years after its release. Those questions include what type of data must display its origin and what data must be exchanged to accurately match patients to their health records, Hans Buitendijk, vice chair of the Electronic Health Record Association, said.
“The key to health data interoperability is that we all need to speak the same language across organizations and software systems,” he said.
The conversation is far from over.
“The USCDI is not complete. There’s still information that’s not contained in it and that’s consciously so, because the proposed standard requires negotiation within specialties and among experts and those negotiations take time and energy,” Blumenthal said.
“Standards are often available, but they need to be agreed upon and then there’s some additional work on how we will operationalize them. But, it’s usually not the creation of the standards, it’s the agreement upon them.”
Health IT champions plan to continue helping health regulators grow the glossary, especially once the rule comes out, Mariann Yeager, CEO of The Sequoia Project, said.
The ONC last year chose The Sequoia Project to draft an agreement aligned with the upcoming rule that doctors and hospitals can join to allow for smoother data transfers.
“We have to ensure that usable and valuable health information are available when and where needed,” Yeager said. “Having common expectations for policy and technical requirements are the foundation and we build up from there.”