Patients Value Immediate Access to Test Results

Summary

Importance  

The 21st Century Cures Act Final Rule requires immediate electronic availability of test results to patients, likely empowering them to better manage their health. Concerns remain about the unintended effects of disclosing abnormal test results to patients.

Aim  

To assess patient and caregiver attitudes and preferences regarding immediate receipt of test results through an online patient portal.

Design, environment and participants  

This large, multicenter survey study was conducted at 4 academic medical centers geographically distributed across the US using an instrument adapted from validated surveys. The survey was delivered in May 2022 to adult patients and caregivers who had accessed test results through an online patient portal account between April 5, 2021 and April 4, 2022.

Exhibitions  

Access to test results through a patient portal between April 5, 2021 and April 4, 2022.

Main results and measures  

Responses to questions related to demographics, test type and outcome, reaction to outcome, notification experience and future preferences, and effect on health and well-being were added. To assess characteristics associated with patient worry, pooled random effects and logistic regression models were used to assess the level of worry based on whether patients perceived test results as normal or non-normal and whether patients received prior advice.

Results 

Of 43,380 surveys returned, there were 8,139 respondents (18.8%). The majority of respondents were female (5,129 [63.0%]) and spoke English as their primary language (7,690 [94.5%]). The median age was 64 years (IQR, 50-72 years).

The majority of respondents (7,520 of 7,859 [95.7%]), including 2,337 of 2,453 people (95.3%) who received abnormal results, preferred to immediately receive test results through the portal.

Few respondents (411 of 5,473 [7.5%]) reported that reviewing results before being contacted by a healthcare professional increased their worry, although increased worry was more common among respondents who received abnormal results (403 of 2442 [16.5%]) than those whose results were normal (294 of 5918 [5.0%]). The result of the pooled model of worry based on the normality of the test results was statistically significant (odds ratio [OR], 2.71; 99% CI, 1.96-3.74), suggesting a association between worry and non-normal outcomes.

The result of the pooled model that evaluated the association between worry and precounseling was not significant (OR, 0.70; 99% CI, 0.31-1.59).

Percentage of patients at each level of concern, stratified by normal vs. non-normal test results

Conclusions and relevance  

In this multicenter survey study of patients’ attitudes and preferences for receiving test results posted immediately through a patient portal, the majority of respondents preferred to receive test results through the patient portal despite seeing the results before discussing them with a health professional. This preference persisted among patients with non-normal results.

Comments

A survey sent to more than 43,000 patients living in several states across the country reveals that 96% of patients who use web patient portals prefer immediate online access to their clinical test results, despite the prospect of reviewing the results before your doctors have a chance to review them. them.

Led by researchers at Vanderbilt University Medical Center (VUMC), the survey was reported in JAMA Network Open .

“Immediate patient access to test results has been the law of the land for less than two years, and this is the largest study to date on how patient portal users perceive it. Our survey says there are few concerns and users overwhelmingly rate it,” said one of the study leaders, Bryan Steitz, PhD, instructor in Biomedical Informatics at VUMC.

It used to be common for doctors and hospitals to delay or completely block certain test results from patient portals, especially those subject to misinterpretation or that could cause emotional distress. Under a federal rule effective April 2021, patients, upon request and at no cost, must have electronic access to their clinical notes and other health information maintained by hospitals and doctors. This includes, with very few exceptions, immediate access to the results of any clinical test. Just as doctors can see new results on their computer and smartphone screens, their patients can also see them over the Internet, if they wish. (At VUMC, patient access to the health record is primarily provided through the My Health at Vanderbilt patient web portal.)

In May 2022, researchers at four large academic medical centers (VUMC, Beth Israel Deaconess Medical Center in Boston, UT Southwestern Medical Center in Dallas, and University of Colorado Anschutz Medical Campus in Aurora) emailed surveys to more than 43,000 portals of patients. users who had viewed test results online since the federal rule went into effect. Among the 8,139 respondents, 80% reported reviewing test results in the past month.

Open reporting of results is intended to encourage patient engagement, and this appears to be borne out in the survey results, Steitz noted, with most respondents reporting seeking additional information after reviewing their test results.

Among other survey results:

• Only 8% of respondents reported being more worried after reviewing test results, with greater worry being more common among respondents who perceived a result as abnormal (17% vs. 5%).

• 95% of respondents who reported receiving “non-normal” results indicated they wanted to continue receiving results posted immediately through the patient portal.

• 90% of patients preferred delivery of results through a patient portal, rather than having to wait for a phone call or clinic visit.

 “The shift to open outcomes raised reservations in some quarters,” Steitz said, “but large increases in patient messaging with healthcare providers do not appear to have emerged as much as expected. And given our survey results, any concerns that open results could push patient portal users over the edge seem misplaced, at least in many situations.”