Would You Want to See Everything Your Doctor Writes About You?

We might not like everything we read, but a new trial found that giving patients easier access to our exam notes gets us more involved in effective care.

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Let's say you gained a bit of weight since your last physical. You know it, deep down at least, but you don't really want to talk about. You've convinced yourself that it's just a phase.

It's one thing to have your doctor point it out to you in the exam room. But what if, at home later that night, you open your computer and see it written right there on your chart: "Patient is approaching an unhealthy weight." What if the doctor used the loaded (if medically accurate) word "obese"?

Before granting open access to their medical notes online through OpenNotes, many doctors expressed concern over this very possibility. Sure, it's their job to make sure their observations about their patients' health are known, but they understandably don't want to come off as offensive. Once they knew patients would be able to peek at what they were writing, some switched over to the more neutral phrase "body mass index."

"The doctor-patient relationship is confidential, but henceforth it's really up to patient whether it's private or not."

A year-long, "quasi-experimental" study led by researchers at Harvard Medical School and Beth Israel Deaconess Medical Center in Boston carefully tracked doctors' and patients' experiences with OpenNotes at three sites: BIDMC, Geisinger Health System in Pennsylvania, and Harborview Medical Center in Washington. The results, which were published in Annals of Internal Medicine, indicate that yes, some doctors ended up censoring their opinions, to some degree, out of consideration for their patients' feelings. But they show how open access to the doctor's charts can change the clinical experience, and pointed to ways in which the digital world can be utilized to benefit the doctor-patient relationship.

Going into the experiment, patients were most worried about privacy. OpenNotes doesn't grant them any new privileges -- you are always free to request access to any and all of your medical information. But receiving an email notification that new notes have been posted, and needing nothing more than log-in information to see them, sure makes it a lot easier. As with all things digital, there's always the concern of this information somehow getting into the wrong hands. More immediately pertinent, it makes it harder to ignore things you'd rather not.

"Making information freely available doesn't necessarily mean that patients will be forced to learn what they'd rather ignore," wrote Michael Meltsner, a law professor at Northeastern University, in an accompanying editorial:

The Internet is a model here: Some people devour the plethora of medical information; others avoid it like the plague. If any generalization suffices, to treat patients like adults requires that we, not a well-meaning professional, make the choice between more and less knowledge.

And, continuing to look to the Internet, our tendency to overshare has a role to play as well.

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"The doctor-patient relationship is confidential, but henceforth it's really up to patient whether it's private or not," Dr. Tom Delbanco, who led the study with Jan Walker, a nurse and Harvard researcher, told me.

Delbanco notes that up 45 percent of patients reported sharing their information with others, either for advice, second opinions, or just general support. He sees this being taken further, going so far as to envision people posting their doctor's reports on Facebook.

Many doctors would likely cringe at the idea of their patients crowd-sourcing medical opinions. But online resourcefulness may be one of the reasons why another large concern of doctors in the study -- that patients would take up too much of their time asking questions about the minutiae of their medical notes -- didn't end up being a problem. Patients, Delbanco contends, are far more resourceful than doctors give them credit for.

Having some distance from the exam room -- logging on with a loved one by your side, and perhaps a glass of wine -- can also make it easier to process all of the information from a visit. "If I talk about the Tropic of Cancer, as a beautiful constellation in the sky, the only thing the patient remembers when he or she leaves my office is that Dr. Delbanco talked about cancer," said Delbanco. "It's just a highly charged atmosphere even if you're well, and certainly if you're sick, or worried, or scared."

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Lindsay Abrams is an assistant editor at Salon and a former writer and producer for The Atlantic's Health Channel.

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