What happens when patients beat their doctors to their test results

Not so long ago, a father broke down in tears with me over Zoom — tears of relief.

When this father had received test results for his child, some of the values in the report appeared in red. That font color made him terrified for his child’s health. It was only when we hopped on Zoom to go over the results that I was able to reassure him: They were in red because the system was comparing them with adult range values.

This is something that happens to me fairly regularly: Patients get their test results and panic. In another example, a young healthy patient had a transient and insignificantly elevated blood cell count, but it still looked alarming to her when she opened the results. A weekend of Googling convinced her she needed a battery of tests to determine whether she had lymphoma.

As so often happens, this phenomenon is the result of good intentions.

When former President Obama signed the 21st Century Cures Act in 2016, the initial goal was to boost interoperability in a health care world that had committed to functioning electronically. The system as we now know it exists on a computer through electronic health records like Cerner, Epic, and Allscripts. Through this ever-expanding web of electronic information, the Cures Act aimed to advance medicine while maintaining transparency and patient autonomy.

Private health information is continuously generated and circulated through the electronic health record (EHR). Achieving interoperability essentially means that this information needs to be organized and integrated so as to be accessible to the necessary participants such as providers, pharmacists, tech developers, and outside medical facilities. This system also needs to be integrated for accessibility and procurement by patients. The Cures Act also limited data blocking, by which one of the above players interferes with the access, exchange, or use of health information. Patients need to have full access to their records and the ability to transfer it to other providers at no cost. This often comes in the form of a patient portal.

The regulations of the Cures Act lit a fire under the health care industry to pursue innovation through competition. The organized dissemination of health information incentivizes biotech and pharmaceutical companies to meet patient needs and ultimately provide more care options. The net driver in all of this is patient advocacy and power. The intention is good. Patients should be at the fore of any decision made in health care.

But when does that power turn to pressure? The data blocking provision of the Cures Act was made active in April 2021, enforcing full compliance from health systems. This means that any and all clinical information must be made immediately available to patients once it is finalized. This is representative of 21^st-century efficiency and is most relevant when it comes to test results. The instant a result is ready for a provider to review, it also emerges through a patient portal notification.

As a primary care doctor, I frequently order blood tests, microbiology cultures, and imaging for chronic and acute conditions. In the past, many labs operated with a 72-hour grace period that allowed ordering physicians to review results and contact their patients prior to releasing them. Now, my patients often see the results before I do, as I can tell by their read receipts in my inbox.

Over time, this has led to more than a few snags. Resulting labs are sometimes accompanied by a message sent from a concerned patient who has beat me to the punch.

While I understand patients’ urge to look immediately, I don’t think it’s often in their best interest. When I can call with the results, I have the chance to explain the meaning behind the numbers. I recently ordered a chest CT for a patient to screen for lung cancer. Her lungs were clear, but the radiologist noted a mass in her right breast that necessitated further evaluation. Fortunately, she had also had her routine mammogram, which was still pending. I reached out to the radiologist, who was able to read it and review prior imaging to determine it was a benign mass. This patient had not seen the results and a day after they came to me, I was able to confidently tell her that we could continue with her standard screenings.

Depending on the discussion I need to have, I ask patients, “How’s my timing?” when calling with results. I want to know that they’re prepared to hear information that will dictate our next steps in their care. Patient portals don’t allow for that. I received my own lab result on my phone while taking a photo at the Art Institute earlier this year. In that moment, I forgot about the Monets in front of me and the old friend who was spending the day with me. Very infrequently do results all come in at the same time, and I received another notification just as I was about to get off my phone and go to sleep that night. How could I ever expect my patients to ignore alerts when they pop up like this? I know I can’t.

There is limited research on the ramifications of the mandate for immediate information release. A multisite study from Vanderbilt University Medical Center found that 95% of patients, the majority of whom were English-speaking, preferred to receive results immediately through their patient portal. It should be noted, however, that less than 20% of patients responded to the survey, which covered only that first year following the rule change. On the workflow side, a cross-sectional study at the same institution found that the number of messages sent by patients after viewing test results had nearly doubled toward the end of 2021. This could indicate a new strain on clinical workload and on patient mental health. In a recent New Yorker article, Danielle Ofri, a physician at Bellevue Hospital, detailed her internal conflict about documenting her clinical suspicions for the reading eyes of other practitioners as well as her patients. This self-censorship can lead to a paradoxical loss of transparency, as physicians might hesitate to use the frank and comprehensive medical jargon they’d use to communicate with fellow experts in their assessments.

Immediate test results through electronic portals can be convenient, especially when a patient wants to know as soon as possible if they have Covid or if their child has strep throat. But this efficiency can also strip the health care experience of a vital human component. A mutual conversation of interpreting results and formulating a plan is part of building the support and trust of the doctor-patient relationship. I value this exchange with my patients, and I think they deserve to have it in a sensitive encounter with a professional rather than alone on a computer. Too often, we risk the chance of patients being left in the dark, which can quickly lead to confusion and fear.

In a country still living in the shadow of the pandemic, patient support and well-being cannot be neglected. Since the start of the pandemic, both depression and anxiety, especially related to personal health, have increased significantly. Dropping results, from pregnancy tests to cancer diagnoses, into patients’ laps can intensify that stress of the unknown. There needs to be more comprehensive and updated research on how the current delivery format is affecting patients. We need to consider reinstating a window period that will allow ordering providers the chance to communicate with their patients prior to that delivery. At the very least, patient portals should offer the individual option for patients to delay receipt of their results until notified by their provider. Patients deserve to choose how soon they want to know.

Christopher Medrano, M.D., is a family medicine resident physician in Chicago.