Immediate access, unintended consequences: Report calls for reforms to test-result release rules

WINSTON-SALEM, N.C. - A new report from the Novant Health Center for Public Policy Solutions is calling for changes to federal regulations that require test results to be released to patients immediately, warning that the practice can leave patients learning of serious diagnoses without the support and guidance of a clinician. The clinician-led report, "When Test Results Outpace Care," recommends targeted policy reforms that would allow limited delays for certain test results while preserving patients' access to their health information.

Under the 21st Century Cures Act and subsequent federal regulations related to "information blocking," test results are required to be released to patients as soon as they are available, even before the patient's physician or care team has had an opportunity to review the results. That means patients often receive medical information written for clinical audiences.

The report follows Minnie Hughes, a patient who received biopsy results through the patient portal while on family vacation. Unable to understand the medical terminology, Hughes asked her niece, a nurse, to review the results.

"She said, 'Oh my, you've got cancer,' Hughes recalled. "But I still didn't know what stage I was in, whether it had spread or what would happen next."

Report outlines policy solutions

The Center's report details actionable solutions at the state and federal levels that would reduce unintended harm while preserving patients' access to their health information, consistent with the intent of the Cures Act.

Current federal regulations include a Preventing Harm Exception that allows the release of test results to be delayed when immediate release has the potential to cause physical harm. The Center proposes expanding the Preventing Harm Exception at the federal level to explicitly include psychological, mental and emotional harm as valid grounds for delaying the release of test results.

The Center's report recommends allowing clinicians and health systems to delay the immediate electronic delivery of test results for up to 72 hours, providing time to review results and contact patients. Several states have already passed legislation that provides this level of flexibility while preserving access to information.

"A slight delay in the release of test results allows clinicians the opportunity to have a personal discussion with the patient so we can help them understand their diagnosis and develop a treatment plan," said Dr. David Rizzieri, physician-in-chief of the Novant Health Cancer Institute. "Patients deserve timely access to their information, but they also deserve support and guidance when facing life-changing news."