COVID Use Cases Highlight Need for More USCDI Data Elements, UCSF Says

Oct. 25, 2020
University of California, San Francisco’s Center for Digital Health Innovation tells ONC that COVID care demonstrates need for expanding data elements in version 2 of U.S. Core Data for Interoperability

Informatics leaders from the University of California, San Francisco’s Center for Digital Health Innovation say that two COVID-19 use cases demonstrate why additional standardized data elements need to be added to version 2 of  the U.S. Core Data for Interoperability (USCDI) data set.

In their May 2019 letter offering suggestions to the Office of the National Coordinator for Health IT about version 1 of USCDI, the UCSF executives noted that ONC proposed only a “modest expansion” of the Common Clinical Data Set. They supported adding clinical notes and provenance immediately, but added that even these additions were 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,” they wrote. “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.”

In their October 2020 letter to ONC, the UCSF team noted that they conducted an experiment to illustrate the importance of adding the missing data elements now. They asked one of CDHI’s most knowledgeable doctors in the area which missing structured data elements are necessary or important now for healthcare in the midst of the COVID-19 pandemic.

They looked at which data sets  are necessary or important to test for COVID-19 and provide outpatient care, end to end. This would include, for example, scheduling the appointment, a visit for the test, processing the test, processing the results, and consulting with the patient. In this use case, they assumed that the COVID-19 test result was positive, but outpatient care was sufficient. They also assessed which missing data elements are necessary or important assuming instead that full emergency hospitalization was required.

In the outpatient use case, they identified six missing data elements, including cognitive status, encounter, family health history, gender identity, pregnancy status and care provider demographics. In the hospitalization use case, many of the same data elements were required, plus reason for hospitalization, discharge instructions, and care team members.

The UCSF team wrote that “these two use cases affirm our experience and policy recommendations that we need these standardized data sets now, as fast as possible, and the Office of the National Coordinator should add them now to USCDI version 2 to help provide better health care and a better national digital health ecosystem.”

Here is the list of additions they recommended to version 1 and are continuing to advocate be added to version 2, along with some of their commentary:

• “Cognitive Status,” “Functional Status,” and “Gender Identity,” as critical datasets about the individual, should be added to version 2.

• “Pregnancy Status” should be added to version 2, given its implications for care on multiple levels.

• “Diagnostic Image Reports (DIR)” should be added to version 2. This should be relatively simple to do technologically and would help with specialty referrals.

• “Pathology Reports” should be added to version 2. Like diagnostic image reports, pathology reports are critically important in care coordination, particularly when receiving a specialty referral. Specialists need access to a person’s lab results, imaging results, and pathology results, at a minimum.

• Reason for Referral” and “Referring or Transitioning Provider’s Name and Contact Information” should be added to version 2.

• Given their critical importance for shared care planning and new delivery models, “Individual Goals and Priorities,” “Provider Goals and Priorities,” “Care Team Member Roles/Relationships,” “Care Team Members Contact Information,” and “Care Provider Demographics” should be added to version 2, UCSF argues. “Care Team Members” are also important for security and access functions.

UCSF also recommends the following data elements be available much sooner:

 “Advance Care Planning” should be available sooner. “Advance Directive” is already an optional criterion in the 2015 Edition under the broader module “Patient Health Information Capture.”

• “Health Insurance Information” must be available sooner, to help determine costs and affordability up front for patients.

 “Personal Representative” should also be available sooner, as it is already a core component of patients’ and their authorized representatives’ ability to view, download, transmit, and access by API their health information, and personal representatives’ existing rights under HIPAA’s Privacy Rule.

• “Reconciled Medication List” should be advanced. Medication errors represent the most common patient safety error,12 and more than 40 percent of medication errors result from inadequate reconciliation in handoffs during admission, transfer, and discharge of patients. According to the Institute of Medicine’s seminal report, Preventing Medication Errors, the average hospitalized patient suffers at least one medication error per day.

• “Social, psychological, and behavioral data,” or social determinants of health, should be advanced, and “Depression” at the very least. Depression is captured now. Social determinants of health and other factors outside the clinical setting account for 85-90 percent of one’s health status.

• “Patient Reported Outcome Measures” or PROMs are a set of standardized measures that are increasingly built into EHRs. UCSF notes that PROMs “will be critical going forward for care coordination, remote patient monitoring, and shared care planning, among other core healthcare activities. They will also be a key part of data transactions between EHRs and innovative apps, and alternative payment models (APMs). We increasingly need to leverage bi-directional read-write of PROMs for care, and this is essential for real- world innovation by vendors building apps and devices. The care plan module in the 2015 Edition already incorporates patient reported outcomes.”

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