Immediate Access to Test Results Preferred by Most Patients in New Survey

A new multisite survey study of attitudes and preferences revealed nearly all participants surveyed supported immediate access to test results via an online patient portal, even if a healthcare provider had not yet reviewed the results.¹

The investigative team at Beth Israel Deaconess Medical Center indicated access to test results had either a positive effect or no effect on levels of worry in the majority of the more than 8,000 study participants, with only a small subset of patients reporting additional worry after receiving abnormal test results.

“As healthcare 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,” said co-author Liz Salmi, communications and patient initiatives director of OpenNotes, BIDMC.²

Implemented in April 2021, the 21st Century Cures Act mandates the immediate electronic availability of nearly all test results to patients, likely allowing better management of health care for patients and strengthening the patient-clinician relationship. However, investigators cited the benefit to immediate access as potentially offset by the unintended consequences of releasing abnormal test results to patients. Online patient portals may not provide adequate guidance on how to interpret sensitive or abnormal results and lead to increased stress for patients.

To assess patient and clinicians attitudes and preferences to open results, the investigative team surveyed a large cohort at 4 geographically diverse academic medical centers in the US between April 2021 and April 2022. The centers included the University of California, Davis Health, University of Colorado Anschutz Medical Center, University of Texas Southwestern Medical Center and Vanderbilt University Medical Center.

Eligible participants were emailed a survey link in May 2022 and those who did not initially complete the survey received 2 follow-up emails sent approximately 10 days apart. The 29-question survey covered topics in 6 domains including demographics and portal user role, test result information, result review behaviors, education and health care practitioner follow-up, effects on health and well-being, and preferences for future results.  Investigators additionally evaluated patient-reported levels of worry as a function of whether participants perceived test results as normal or not normal and whether they were pre-counseled.

Of 43,380 surveys delivered, there were 8139 respondents (18.0%) with a median age of 64 years. Most respondents were female (n = 5129 [63.0%]) and spoke English as their primary language (n = 7690 [94.5%]). According to the data, a total of 6306 of 7856 respondents (80.3%) reported reviewing at least 1 test result in the past month and most reported normal findings (n = 3582 of 6246 [57.3%]).

After being asked about preference for contact about future results, most respondents (90.2%; n = 7046 of 7814) indicated they would prefer result delivery via the patient portal. In addition, nearly all respondents (n = 7520 of 7859 [95.7%]) noted they preferred to receive results immediately through the patient portal, even if their health care practitioner did not review a result beforehand. This included 2337 of 2453 individuals (95.3%) who received nonnormal results.

The analysis additionally suggested few respondents (n = 411 of 5473 [7.5%]) reported increased worry after viewing test results. Among those reporting nonnormal results, data showed most reported less or no change in their level of worry (2039 of 2442 [83.5%]). However, the data indicate respondents with nonnormal results were more likely to report being worried or much more worried than those who reported normal results (n = 403 of 2442 [16.5%] vs. 294 of 5918 [5.0%]).

Moreover, the pooled random-effects model evaluating worry as a function of test result normality suggested that nonnormal results were associated with greater likelihood of worry compared with normal results (odds ratio [OR], 2.71; 99% confidence interval [CI], 1.96 - 3.74). However, the result of the pooled model evaluating the association between worry and pre-counseling was found to be nonsignificant (OR, 0.70; 99% CI, 0.31 - 1.59).

“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,” Salmi said.²

References

1. Steitz BD, Turer RW, Lin C, et al. Perspectives of Patients About Immediate Access to Test Results Through an Online Patient Portal. JAMA Netw Open. 2023;6(3):e233572. doi:10.1001/jamanetworkopen.2023.3572
2. BIDMCHealth. Patients overwhelmingly prefer immediate access to test results, even when the news may not be good. EurekAlert! https://www.eurekalert.org/news-releases/983183. Published March 20, 2023. Accessed March 20, 2023.