Do information blocking, test result rules hurt patients?

What are the consequences of "immediate resulting"?

Despite AMGA's critique, patient data access mandates under the 21st Century Cures Act garner support -- in particular, from patients themselves.

An April 2025 report in JAMA Network Open found that patients get stressed waiting for their test results to appear in the patient portal, with more than a third hitting the refresh button in anticipation of their results.

In March 2023, researchers found that patients are okay with getting their test results via the patient portal, even if their doctor hasn't had a chance to review or discuss them together first.

Both reports stressed the importance of strong patient-provider communication to set expectations around results. Those conversations are also highly endorsed by both ASTP/ONC and AMGA.

"Part of it is having a conversation with patients on the front end. You have to prepare them," Drevna explained. "'This is what we're testing for, this is what the possibility might be.' So you're prepped for that. That's something ASTP/ONC has been pushing, is patients should be prepared for results. That works to an extent."

But good intentions can still have adverse consequences, especially if patients get a life-altering test result, a result they weren't expecting or a result they don't understand.

The issues compound if patients get results at an inopportune time, which is a possibility given that IT systems are built to send a notification to patients as soon as the lab returns with the results. Patients might get their results when out to dinner with friends or at 6 p.m. on a Friday night, facing an entire weekend before a doctor is available to consult with them.

What do patients do in those instances? They Google their prognosis, Drevna said, which can cause more stress or even prompt patients to act against their best interests.

Other AMGA members have recalled patients leaving the emergency department early and against medical advice, or they show up in the ED unnecessarily because they're confused about their health and have nowhere else to go.

All of this amounts to emotional stress, Drevna said.

"A lot of times, there's a difference or a disconnect between the theory of a regulation or rule and how it's practiced on the ground," he acknowledged. "We're trying to make sure that patients get access to their information in the most compassionate way possible."

There's some evidence to back this approach. For example, a report in the journal Radiation Oncology found that patient anxiety levels go down if they can receive a test result with the counsel of their doctor.

According to AMGA, there needs to be room in the information blocking regulations to allow for that counsel, at least in extreme circumstances.

Reimagining immediate resulting

AMGA is optimistic that it can reach common ground with ASTP/ONC.

In fact, Drevna said there are already provisions in the information blocking rules that open the door for more judicious immediate resulting.

"There's a preventing harm exception. All we're asking for is to take a broader view of how we're defining harm," he noted. "If this is going to cause undue distress to a patient or their caregiver, let's pause a little -- not indefinitely -- so it's not shocking to somebody to get this over text, email or push notification."

That will foremost require AMGA, ASTP/ONC and other physician and patient groups to come together to determine the types of health information that warrant such a pause. Drevna acknowledged that some types of tests -- like a blood test to measure cholesterol -- don't need a hold before being sent to the patient.

But if that blood test detects an unexpected pregnancy? That might warrant a hold.

Tests to detect cancer, serious illness or some types of infectious diseases might also need to be held until the patient can meet with their care team.

"What type of test results are going to cause the most confusion or discomfort? Which test results are, frankly, life altering?" Drevna queried. "Those are the types of things that you're going to want to make sure are delivered in the most compassionate way possible."

Changes in immediate resulting will also require buy-in from health IT companies, particularly EHR vendors. Vendors will need to build in the capability for providers to selectively hold certain test results, for example.

Additionally, AMGA is looking for more capabilities to add context to clinical notes.

"The open notes concept is a really neat idea, and I know there's been a lot of hard work on it," Drevna said. "But a lot of it's in medical terminology, medical speak."

With patient health literacy levels low, it'll be important for EHR vendors to develop systems to translate medical jargon. That could help patients understand what their tests will determine or, in appropriate cases, what a result might mean.

AMGA does strongly believe in data transparency and patient access, Drevna emphasized. But the organization equally believes in patient well-being, including mental well-being. By putting the right human-centered and IT-centered processes in place, Drevna is optimistic the industry can achieve its goals.

"We respect the fact that patients need access to the results as soon as feasible within the context of their broader healthcare needs. It's not like we're trying to say, 'these are our results and we will tell you when you get them,'" Drevna concluded.

"But this hard and fast rule of, 'you're going to be held liable and be considered an information blocker if you don't put this stuff out immediately' is causing more problems than I think what they were trying to solve for in the Cures Act."

Sara Heath has reported news related to patient engagement and health equity since 2015.