In April 2021, the ONC’s information-blocking portion of the 21st Century Cures Act went into effect, mandating that healthcare providers make nearly all test results and clinical notes immediately available to patients. Since then, many clinicians have expressed concern about the effects of releasing test results to patients before clinicians offer counsel or interpretation. But a new survey has found that users overwhelmingly supported receiving the results immediately, even if their provider had not yet reviewed them.
The survey of more than 8,000 patients was conducted in four geographically diverse medical centers; University of California, Davis Health, University of Colorado Anschutz Medical Center, University of Texas Southwestern Medical Center and Vanderbilt University Medical Center. Adapted from a previously validated instrument, the 29-question survey covered topics including test result information, result review behavior, education and follow-up by providers, the effect of reviewing results on health and well-being, and user preferences for receiving future test results.
The findings, published in JAMA Network Open, showed only a small subset of patients reported experiencing additional worry after receiving abnormal test results. In addition, pre-counseling by the healthcare team before tests were ordered was linked to reduced worry among patients with abnormal results.
Of the 8,139 survey respondents, 80 percent reported reviewing at least one test result in the past month. Most respondents (57 percent) reported normal findings. When asked about their preferences for contacts about future test results, 90 percent of respondents with normal results indicated they would prefer receiving their result via the patient portal. Nearly all respondents, 96 percent, indicated a preference for receiving results through the patient portal as soon as they are available, even if their provider had not yet reviewed them.
With respect to patients’ worry, fewer than 8 percent reported being more worried after viewing test results. Among respondents who reviewed a result before being contacted by a provider, almost half reported feeling less worried after reviewing their results through the portal. Among those reporting not normal results, most (84 percent) reported less or no change in their level of worry. However, respondents who viewed not normal results were more likely to report being more worried, or much more worried, than those reporting normal results (17 percent versus 5 percent).
In a statement, co-senior author Catherine DesRoches, DrPh, said, “Prior studies performed by OpenNotes investigators established immediate release of clinical notes as a recommended best practice. However, releasing test results to patients immediately, often before a clinician can provide counseling and context, was yet to be studied widely and remains controversial.” DesRoches serves as executive director of OpenNotes, the international movement based at Beth Israel Deaconess Medical Center focused on increasing information transparency in healthcare, and associate professor of medicine at Harvard Medical School.
In an interview published by the ONC, Bryan Steitz, an instructor in the Department of Biomedical Informatics at Vanderbilt University Medical Center, said, “I think there’s opportunity to allowing patients to have greater flexibility managing the release and notification preferences. And I think while some patients may like to receive these results as soon as possible and have time to review and do their own research, there’s also likely a cohort of patients who would rather wait and get this information from their provider, where they’re able to ask questions or get the provider’s thoughts and then go do their research.”
