Zoya Qureshi
The Atlantic
Originally posted 15 NOV 22
You may not be aware of this, but you can read everything that your doctor writes about you. Go to your patient portal online, click around until you land on notes from your past visits, and read away. This is a recent development, and a big one. Previously, you always had the right to request your medical record from your care providers—an often expensive and sometimes fruitless process—but in April 2021, a new federal rule went into effect, mandating that patients have the legal right to freely and electronically access most kinds of notes written about them by their doctors.
If you’ve never heard of “open notes,” as this new law is informally called, you’re not the only one. Doctors say that the majority of their patients have no clue. (This certainly has been the case for all of the friends and family I’ve asked.) If you do know about the law, you likely know a lot about it. That’s typically because you’re a doctor—one who now has to navigate a new era of transparency in medicine—or you’re someone who knows a doctor, or you’re a patient who has become intricately familiar with this country’s health system for one reason or another.
When open notes went into effect, the change was lauded by advocates as part of a greater push toward patient autonomy and away from medical gatekeeping. Previously, hospitals could charge up to hundreds of dollars to release records, if they released them at all. Many doctors, meanwhile, have been far from thrilled about open notes. They’ve argued that this rule will introduce more challenges than benefits for both patients and themselves. At worst, some have fretted, the law will damage people’s trust of doctors and make everyone’s lives worse.
A year and a half in, however, open notes don’t seem to have done too much of anything. So far, they have neither revolutionized patient care nor sunk America’s medical establishment. Instead, doctors say, open notes have barely shifted the clinical experience at all. Few individual practitioners have been advertising the change, and few patients are seeking it out on their own. We’ve been left with a partially implemented system and a big unresolved question: How much, really, should you want to read what your doctor is writing about you?
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Open notes are only part of this conversation. The new law also requires that test results be made immediately available to patients, meaning that patients might see their health information before their physician does. Although this is fine for the majority of tests, problems arise when results are harbingers of more complex, or just bad, news. Doctors I spoke with shared that some of their patients have suffered trauma from learning about their melanoma or pancreatic cancer or their child’s leukemia from an electronic message in the middle of the night, with no doctor to call and talk through the seriousness of that result with. This was the case for Tara Daniels, a digital-marketing consultant who lives near Boston. She’s had leukemia three times, and learned about the third via a late-night notification from her patient portal. Daniels appreciates the convenience of open notes, which help her keep track of her interactions with various doctors. But, she told me, when it comes to instant results, “I still hold a lot of resentment over the fact that I found out from test results, that I had to figure it out myself, before my doctor was able to tell me.”
