Timely communication of diagnostic test results to patients is essential to ensure the quality and safety of the diagnostic process. Providing access to test results and other clinical records through electronic patient portals is an important way to engage patients in their healthcare decisions and prevent test results from being missed.1
Although the general trend has been toward increased sharing of health records with patients,2,3 this practice was most recently codified in the 21st Century Cures Act (hereafter referred to as the Cures Act). The Cures Act removes most restrictions to electronic health information for patients in healthcare organizations that use electronic health records (EHRs).4 Healthcare organizations have complied with the Act’s “information blocking” rule by making test results available to the patient within the patient portal (assuming the patient has an active portal) as soon as the results are finalized.
One outcome of making test results available immediately is that patients often gain access to their results before the ordering clinician has had an opportunity to review them. Delayed release of results to the portal is allowed in a few cases, including information security concerns and when it is reasonable to believe that withholding results will substantially reduce risk of harm.
The Cures Act has raised concerns that patients may become upset or confused by disclosure of sensitive or abnormal test results before a clinician has had an opportunity to review and discuss the findings with the patient. For instance, in a 2023 editorial, Jack Resneck, Jr., then the president of the American Medical Association, affirmed the importance of patients’ access to their health information. He called for greater regulatory flexibility, however, noting that, “new federal policies are indifferent to the harms that come to patients receiving bad news when least expected.”5
Recent revisions to California’s Health and Safety Code, passed in 2022, limit immediate electronic access to certain sensitive test results, such as a positive HIV test or a test revealing a new or recurrent malignancy.6 Few evidence-based recommendations are available on how best to ensure timely communication of test results to patients and mitigate unanticipated consequences in the current environment.
The aim of this review was to identify current evidence and best practices to inform patient-centered implementation of test result delivery through patient portals under the Cures Act. We first undertook a scoping review of the literature on releasing test results through patient portals. The overarching question guiding our review was, “What evidence is available to inform patient-centered implementation of immediate test result release under the Cures Act?” In line with the goals of a scoping review, we sought to characterize and chart the available evidence, identify gaps, and identify areas for future, more indepth evidence synthesis (e.g., systematic review or meta-analysis).
As a complement to the scoping review, we solicited further information on implementation of the Cures Act from subject matter experts (SMEs) through a series of brief qualitative interviews. Through these interviews, we aimed to better understand emerging clinical, operational, and policy-related perspectives on electronic test result communication under the Cures Act.
