Informatics leaders from the University of California, San Francisco’s Center for Digital Health Innovation (CDHI) are urging the Office of the National Coordinator for Health IT to include “write” as well as “read” access for FHIR-based application programming interfaces in its new interoperability rules.
The UCSF executives note that in its proposed rule, ONC would require that health systems only provide “read” access to the patient’s or population’s health information. “Write” access would allow them to receive patients’ corrections and amendments to their designated record set and to integrate patient-generated health data, patient-reported outcomes, and social determinants of health. Instead, ONC envisions revising the certification criterion in the future to provide “write” access, too, “once FHIR-based APIs are widely adopted.” In their written comments to regulators, the UCSF executives said that If ONC requires “write” access now as well as “read” access, then the benefits of “write” access can be widely available in two years.
Signing the UCSF letter to ONC are Michael Blum, M.D., Associate Vice Chancellor, Informatics, and Director, Center for Digital Health Innovation; Aaron Neinstein, M.D., Director, Clinical Informatics; Mark Savage, Director, Health Policy; and Edwin C. Martin, Director, Technology Center for Digital Health Innovation.
If ONC initially chooses to require “write” access only for some priority use cases, the CDHI team suggests “patient goals,” “patient-generated health data” (including patient-reported outcomes, patient-generated device data, and questionnaires), “care plans” for shared care planning, and the right to correct and amend one’s health information under the HIPAA Privacy Rule. “As more and more care, and more and more data, occur outside the clinical setting, it becomes important for doctors to have access to these data originating outside their own electronic health records. Health care occurs at the pharmacy, the urgent care clinic, the school clinic, the dentist, people’s homes, as well as the doctor’s office and hospital,” they wrote.
Using a road-building metaphor the CDHI team argues that requiring “read” access but postponing “write” access “seems akin to building only one direction of a city’s highway, outbound, and waiting indefinitely to build the other direction into the city. Naturally, it is far more efficient and useful to build both directions and the whole road at the same time. Shared care planning, accountable care organizations, precision medicine, multi-sector data sharing to integrate social determinants of health, the learning health system—all depend upon bi-directional, even multi-directional data flows. We urge ONC to telegraph now that write access, too, should be in place within 24 months to meet the needs of providers and patients nationwide.”
In its comments on the U.S. Core Data for Interoperability, UCSF executives note that ONC proposes only a “modest expansion” of the Common Clinical Data Set. They support adding clinical notes and provenance immediately, but add that even these additions are not enough to meet national health imperatives. “Technical specifications are already available for 46 of 50 data classes ONC has listed for candidate and emerging status, and all 50 are critical to achieving nationwide interoperability. We urge ONC to add additional data elements now so that they, too, become available for better health care and developing a shared nationwide learning health system.”
A final suggestion from UCSF is that the Cures Act’s information-blocking provisions apply to health IT developers generally, not just developers of certified health IT. “Left uncorrected, it could become the exception that swallows the rule and create perverse incentives where health IT developers avoid certified health IT and escape the information blocking prohibitions altogether—clearly frustrating Congress’s policy in the Cures Act.”
