Patients want their medical test results immediately, even when its bad news, survey finds

Nearly every patient wants to see their lab test results as soon as possible, even if their provider has not yet reviewed the results, according to new data in a new study.

In a survey of 8,000 patients who accessed their test results via an online patient portal account, 96% of patients preferred receiving immediately released test results online.

That percentage stayed at around 95% even for patients who received non-normal results through the online patient portal.

The findings, published in JAMA Network Open, suggest there may be "benefits to receiving abnormal results online, such as allowing patients to choose where and with whom to view such results," the study's lead authors wrote.

Only a small subset of patients reported experiencing additional worry after receiving abnormal test results, according to the study. 

The survey was conducted by researchers at Beth Israel Deaconess Medical Center (BIDMC), Vanderbilt University and other early adopters of the OpenNotes initiative, which is a movement focused on increasing information transparency in healthcare. The study looked at patients who received their results between April 2021 and April 2022 at four academic medical centers.

As part of the 21st Century Cures Act, in April 2021, new federal rules went into effect mandating that healthcare providers make nearly all test results and clinical notes immediately available to patients. The regulations give patients easier access to their digital health records through their smartphones.

Policymakers and interoperability advocates say giving patients greater access to their medical records and personal health information empowers them to manage their health care and supports coordination efforts among patients, care partners and healthcare teams.

However, there have been ongoing concerns about the effects of immediately releasing test results and medical information before physicians and healthcare providers can contact patients to discuss the results and help interpret them. 

A small subset of patients, 7.5%, reported that their worries increased when they looked at their results before they were contacted by a healthcare practitioner. That reaction was more common among respondents who received abnormal results (16.5% of that cohort) than those whose results were normal, just 5% felt additional worry, according to the study.

The study found that pre-counseling by the healthcare team before tests were ordered helped to reduce patients' concerns among those who received abnormal results.

“Online patient portals have emerged as important tools for increasing patient engagement,” said co-senior author Catherine M. DesRoches, DrPH, executive director of OpenNotes and associate professor of medicine at Harvard Medical School, in a statement.

“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," DesRoches said.

In an interview with the Office of the National Coordinator for Health IT, an agency with HHS, one of the lead authors of the study, Robert Turer, said the large sample size of the study suggests in aggregate that "information is empowering to patients and that it can relieve worry."

"That’s sort of the big picture story of what you’re describing here, even in the setting of abnormal test results. However, it is probably a little bit too early to get too deep into psychological harms or benefits to patients from the immediate release of these results," said Turer, assistant professor in the Department of Emergency Medicine at the University of Texas Southwestern Medical Center.

Nearly 57% of patients in our survey went looking for additional information after they reviewed their results, and the majority of those individuals looked at the internet, highlighting potential unmet information needs, the study authors said. 

About a quarter asked another healthcare provider, according to the study.

"Providing patients time to review, research and process their own test results might allow them to prepare for subsequent discussions with their health care practitioners and may lead to better shared decision-making," the study authors wrote.

Health systems, providers and hospitals may need to take steps to manage patients' expectations as they now have immediate access to their health data, the study authors said.

"I think there’s an 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," said Bryan Steitz, instructor in the Department of Biomedical Informatics at Vanderbilt University Medical Center, in the ONC interview.

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 at BIDMC.

"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.