Advancing Collection of Standardized Symptoms Data  

The Opportunity 

Information on patients’ symptoms is critical to the diagnostic process and essential for evaluating diagnostic quality and advancing diagnostic excellence. Despite this, symptom data are not consistently recorded or defined in Electronic Health Record (EHR) systems, impeding clinicians’ access to information they need to provide accurate, timely diagnoses and limiting efforts to measure and report on quality of care.

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. Developing data standards that improve clinician access to symptoms information across care settings and over time will help improve diagnosis. Gathering early input from clinicians during standards development will help ensure the standards best enable the use of standardized symptoms data in clinical care, quality improvement, and quality measurement.  

About the Project 

In the Advancing Collection of Standardized Symptoms Data initiative, NQF is working with the American Medical Association (AMA) to engage physicians early in the standards development life cycle for collecting and sharing patient symptom data in clinical care. NQF will facilitate the process of developing consensus on key terms, attributes, and characteristics that support sharing of symptom data. In the first 12 months, NQF will identify diagnostic excellence strategies, or “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.

To move the standards toward implementation, NQF will bring the key symptom data standards recommendations defined by clinicians through the Health Level Seven® (HL7®) 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. HL7® creates a set of global standards for exchanging medical information that allows healthcare systems to communicate with one another. This work implements a key recommendation from the National Academy of Medicine’s 2015 report on improving diagnosis to advance data standards, including those for symptoms, working with physicians, to better support diagnosis.

This initiative is supported by funding from the Gordon and Betty Moore Foundation.

Contact Information

For more information, please contact the project team at symptoms@qualityforum.org.