Do patients need immediate access to their test results?

Article by Rajiv Leventhal | Mar 24, 2023

The news: Patients want to see their test results online once they’re ready, even if a clinician hasn’t reviewed them, according to a study recently published in JAMA Network Open.

Digging into the data: Around 8,000 US patients (median age 64) who had recently accessed test results—such as blood work or imaging—via an online portal were surveyed in May 2022.

96% said they want to see their results immediately, even if a doctor hasn’t looked at them first.
The figure barely changed (95.3%) when accounting for patients whose test results were abnormal.

What the law requires: The 21st Century Cures Act mandated that providers release test results to patients without delay. This means that while physicians receive the results at the same time as patients, in many cases it’s the patient who reads them first.

The law went into effect April 2021, with the intent of switching the gatekeeper of patient health data from doctors to consumers.
Prior to the law’s enactment, physicians had up to 30 days to deliver patients their health data.

Doctors push back: The American Medical Association (AMA) and other associations advocating for physicians have protested the rule, arguing that this specific requirement is causing patients mental and emotional harm.

The AMA put together a list of anecdotes from clinicians who say they’re already dealing with confused and distraught patients as a result of the law.
For example, one caregiver said their cancer patient received a pathology report in her portal that showed retained cancer post-treatment. The patient was unable to reach her doctor right away since it was the weekend.
A dermatologist noted that lab results sometimes come piece by piece, meaning patients get slammed with disorganized information without explanation accompanying it.

Another study reveals different findings: The AMA conducted its own survey, asking 1,000 patients last year if they want their physicians to contact them about test results before they show up in the portal. The findings of this survey differed from the JAMA study:

42% said they wanted test results as soon as they were available.
43% wanted physicians to examine the results first.
15% were unsure.
Over half of patients who wanted instantaneous access said that in the case of a debilitating, life-limiting, or terminal illness, they’d prefer a physician review the results first.

Our take: The JAMA study’s results are surprising to us. There might be some bias reflected in the sample since only patients who had previously accessed test results in the portal were included in the study cohort.

Lab and test results can be difficult for consumers to interpret and may send them on a wild internet goose chase, or even worse. It’s reasonable for physicians to request time to carefully review test results before patients see them. At a minimum, doctors should be able to ask patients their notification preferences for how quickly they want to see them and adjust accordingly.