The issue with immediate test results

One of the core tenets of the 21st Century Cures Act Final Rule is the immediate electronic availability of clinical notes and test results to patients who ask for them. Recent research suggests patients widely embrace the idea of viewing test results before their physicians have had a chance to review them, though questions remain about how to help patients who need to discuss their results.  

The push to provide patients with access to their records began five decades ago with a 1973 New England Journal of Medicine editorial proposing open access as a strategy to alleviate “[d]issatisfaction with the functioning of the medical-care system.” In 2012, the results of an early effort to share records, known as OpenNotes, found as many as 87% of patients felt more in control of their care, while only 8% felt confused or worried after seeing their notes. By 2021, when the Cures Act final rule went into effect, more than 50 million patients had access to their records through OpenNotes. 

A recent JAMA study had similar findings for test results. More than 95% of patients surveyed favored having immediate access to test results through their portal, while less than 8% said reviewing results before their provider contacted them made them worried. This seems to put to bed the longstanding presumption that patients should be spared immediate access to “results associated with misinterpretation or emotional distress,” as researchers put it. 

That said, common concerns about widespread access to test results persist. 

• Though only 8% of patients were worried about test results, the rate was much higher among patients who received abnormal results (16.5%) than those with normal results (5%).  

• Most portals present test results with limited contextual information, educational resources, or support services – all of which may benefit a patient with an abnormal result. 
• A survey of Minnesota State Fair attendees revealed average patients may not comprehend common medical phrases used to communicate test results. 
• One health system experienced an 88% increase in portal messages from patients once it started releasing test results in accordance with the Cures Act. 
• Healthcare’s digital divide extends to the patient portal, with patients on public insurance or those identifying as non-White less likely to read open notes or test results. 

Some of these concerns are addressed in statute. The Cures Act exempts HIV tests from being “immediately available,” while states such as California and Kentucky require clinicians to consult with patients prior to releasing certain test results electronically – an MRI revealing a malignant tumor, for example. (Such requirements aren’t considered information blocking under the Cures Act.) This helps ensure that, in cases of potential emotional distress, patients receive the context and support they need. 

Automation technology could help, too. The Health Care Compliance Association noted health systems cannot expect manual workflows to keep up with demand to provide patients with their information in accordance with the Cures Act. With the right business rules in place, electronic health record systems could automatically send normal test results through the portal, attach relevant resources in situations where context would be valuable, and flag results that require or would otherwise benefit from a clinical consultation prior to sharing with a patient.  

Brian Eastwood is a Boston-based writer with more than 10 years of experience covering healthcare IT and healthcare delivery. He also writes about enterprise IT, consumer technology, and corporate leadership.