Monday, June 5, 2023

Patient portals and electronic health record transparency: pros and cons

After completing my fellowship, I considered taking a job filling in for a family physician on sabbatical who had been in solo practice for thirty-plus years. Even for these pre-electronic health record (EHR) days, his written notes were telegraphic. A typical example: "Patient doing fine. Labs normal. Continue current meds and follow up in 6 months." That was it. What he recorded in the chart was for his eyes only. No need to write an essay, or even a paragraph, when the only purpose was to jog his memory for the next time he saw the patient.

A few years later, the federal government handed tens of billions of dollars to physicians and health care organizations to convert their paper charts to digital form in exchange for requirements to use these records to measure quality of care and increase transparency of health information to patients through so-called “patient portals.” Notes became longer and more detailed. The negative effects of EHRs on physician burnout and health care team communication have been well-documented. Aside from initiatives such as OpenNotes, however, transparency was not fully implemented until last year, when the Office of the National Coordinator for Health Information Technology re-interpreted a previous rule against “information blocking” as an expectation that patients would have real-time online access to their office notes and test results rather than having to request them. With little fanfare, the floodgates opened.

In an insightful article in The New Yorker, Dr. Danielle Ofri, a general internist, admitted her newfound reluctance to list an extensive differential diagnosis for anemia in the EHR because she worried that mentioning colon cancer or a duodenal ulcer could scare the patient. After all, she observed, “my inbox was already jammed with panicked messages from people convinced that they had catastrophic illnesses, based on minuscule lab discrepancies and panic-inducing Google searches.” Comparing EHR transparency to the “C-SPAN effect,” in which live, nonfiltered television coverage of Congress made lawmakers more likely to grandstand to the camera, Ofri noted that granting patients instant access to test results has also had unintended consequences:

In one devastating stretch of twenty-four hours, two of my patients learned of their cancers’ metastatic reappearance by way of the portal. Their inboxes pinged with new test results; they read them before either their oncologist or I had even seen the scans, let alone called. … In the past, I’d do the legwork [for the evaluation] before I called the patient. Now that buffer is gone, and I am pressured to act immediately: the patient has seen the result, and further delay would be unconscionable. This timbre of rush imperils thoughtful analysis, and I worry incessantly about missteps.

In contrast to the mixed feelings of primary care clinicians and staff about patients having online access to their health records, research suggests that patients overwhelmingly prefer to see test results immediately, even though those marked as abnormal increased worry prior to discussions with health professionals. Sometimes, portals save time. Rounding on my practice’s adult inpatient service last month, I was pleasantly surprised that in several cases I could skip through the text of a recently resulted blood or imaging test finding – which the patient or their designated decision-maker had already seen on a smartphone app – and jump straight into the implications for their condition and care plan. Finally, portals allow patients to proactively correct or update medications, allergies, and problem lists outside of office visits, rather than taking up precious minutes with medical assistants or physicians in the examination room.

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This post first appeared on the AFP Community Blog.