Patients prefer bad news to no news on test results

Patients who access test results through an online portal account overwhelmingly supported receiving the results immediately, even if their provider had not yet reviewed them, according to a survey conducted by Beth Israel Deaconess Medical Center and colleagues.

Published in JAMA Network Open, the findings included a small subset of patients who reported experiencing additional worry after receiving abnormal test results. However, pre-counseling by the health care team before tests were ordered was linked to reduced worry among patients with abnormal results.

“Online patient portals have emerged as important tools for increasing patient engagement,” said co-senior author Catherine M. DesRoches, executive director of OpenNotes, the international movement based at BIDMC focused on increasing information transparency in health care. “They enable patients to access information, participate in medical decision-making and to communicate with clinicians.

“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,” said DesRoches, who is also an associate professor of medicine at Harvard Medical School.

To assess patient and caregiver attitudes and preferences related to receiving test results through the patient portal, DesRoches and colleagues delivered surveys to more than 43,000 patients and care partners who accessed their test results via an online patient portal account between April 2021 and April 2022.

Of the 8,139 survey respondents:

• 80 percent reported reviewing at least one test result in the past month.
• 57 percent reported normal findings.
• 90 percent of respondents with normal results indicated they would prefer receiving their result via the patient portal.
• 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.
• Less 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, 84 percent reported less or no change in their level of worry.

The survey results suggest that patients receiving not normal results are indeed at increased risk for worry. Nevertheless, more than 95 percent of participants who received abnormal test results reported preferring to continue to receive immediately released results through the portal.

“Respondents overwhelmingly preferred to receive test results through the patient portal, even if it meant viewing results prior to discussing them with a health care professional,” said co-author Liz Salmi, communications and patient initiatives director of OpenNotes at BIDMC. “As health care systems continue to navigate this new era of health information transparency, balancing patients’ expectation of immediate access to their information with the need to manage increased worry is important. Additional research is necessary to better understand the nuance of worry from receiving abnormal test results, especially as it relates to revealing information about a newly diagnosed condition such as Huntington’s disease or cancer.”

The survey was fielded 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. 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.