NQF, AMA Will Work to Standardize Patient Symptom Data

Feb. 21, 2024
National Quality Forum will engage a wide array of physicians early in the standards development life cycle and then initiate standardization through the HL7 consensus process

The nonprofit National Quality Forum (NQF) is working with the American Medical Association (AMA) to initiate standards for collecting and sharing patient symptom data in clinical care. The NQF says this is a crucial step toward improving the diagnostic process and reducing diagnostic errors, leading to better, safer care. 

Despite being a critical input to the diagnostic process, symptom data are not consistently recorded or defined in EHR systems, impeding clinicians’ access to information they need to provide accurate, timely diagnoses. Diagnostic error is a persistent contributing factor in patient harm events. A recent study from the Johns Hopkins Armstrong Institute Center for Diagnostic Excellence estimates that about 795,000 people are seriously harmed or die each year as a result of incorrect or delayed diagnosis. 

“Patients place a great deal of trust in doctors, nurses, and other healthcare professionals, who rely on the information patients provide about their conditions, health history, and symptoms,” said Elizabeth Drye, M.D., S.M,, chief scientific officer at NQF, in a statement. “They want the clinicians who care for them to be equipped with the right information at the right time to make the best diagnoses possible. For patient safety and to improve the care experience, it is vitally important to develop consensus on symptom data standards with input from clinicians who rely on these data to improve diagnosis and care.” 

NQF noted that developing standards with early input from clinicians is needed to ensure the data are useful and actionable in real-world care settings. The organization will test a new approach for engaging clinicians in developing standards, with AMA helping to recruit physicians to participate in the effort. 

As a first step to engage clinicians, NQF is working with the AMA to engage a wide array of physicians early in the standards development life cycle to identify key terms and characteristics that support sharing of symptom data, and then initiate standardization through the HL7 consensus process. 

In the first 12 months, NQF will identify diagnostic excellence use cases for which enhanced symptom data is critical, and then convene medical specialties through expert clinician meetings to elicit input and develop consensus surrounding key terms and characteristics of data that support sharing of patient symptoms.

In the following 18 months, NQF will bring the key symptom data standards recommendations defined by clinicians through HL7’s standards development process, to develop and refine interoperability artifacts in support of the use cases that will lead to enhanced adoption of sharing patient symptoms data. This work is supported by funding from the Gordon and Betty Moore Foundation. 

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