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

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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."

Still, that the study presents the fact that most doctors didn't notice any increase in their workload as an overwhelmingly positive outcome overlooks some worrying possibilities: What if patients do a bad job of interpreting information and are never corrected by a medical professional? What if the patients weren't asking more questions because they were afraid of retaliation, or of burdening their overworked physician? Delbanco contends that patients do tend to think twice about bothering their doctors, although he also points out that the reports of minimal increases in doctor-patient exchanges could be attributed to the net effect of the patients who had more questions being balanced out by those who were able to find ways to answer them on their own.

However empowered the information may make them, there is, of course, no guarantee that patients are going to like what they see. In the study, the authors write:

We anticipate that some may be disturbed in the short term by reading their notes, and doctors will need to work with patients to prevent such harms, ideally by talking frankly with them or agreeing proactively that some things are, at times, best left unread.

Doctors would ultimately need to be responsible for knowing who is equipped to deal with complete access -- in this study, many patients with severe mental disorders or drug addictions were not permitted to take part. Less informed, educated, or resourceful patients would also need to be identified, and doctors would need to be willing to put more time into discussing their medical information with them. Even with this sort of access, less informed patients could have trouble understanding their notes, and doctors, instead of leaving them with a slew of confusing and possibly frightening information, would need to be willing to put more time into explaining everything to them. And while most patients at Geisinger and Beth Israel opened one or more of their notes, they were already accustomed to logging on to their hospitals' websites to access other medical information. Less than half of the patients at Harborview viewed their notes -- in part because many of them don't own computers.

But in an ideal scenario, programs like OpenNotes can be the first step in building a more collaborative relationship between doctors and patients. Delbanco is already looking ahead to what can come next: Let's say, again, that you've gained weight since your last physical, and you see -- right there on your chart -- that this hasn't escaped your doctor's notice. What if you could write back -- right there on your chart -- that you had been stressed at work, or were going through personal difficulties? Just as there are many things you can learn about yourself from reading your doctor's notes, there are plenty of things that you know that your doctor does not. "The basic goal of care, as far as I'm concerned," said Delbanco, "is to get these two unique bodies of knowledge as close as possible."

It's too soon to know whether more open communication will foster long-term trust and collaboration between doctors and patients. The less optimistically inclined may see only increased opportunities for malpractice suits. But as 99 percent of the over 13,000 patients who tried out OpenNotes indicated that they'd like to continue, this sort of collaborative access might be on its way to becoming standard.

Finally, for what it's worth, doctors needn't worry too much about hurting feelings by telling it like it is. One patient said that seeing himself labeled "mildly obese" by his doctor forced him to recognize what he had been ignoring, and he gave himself the goal of reversing that comment by his next check-up. Others reported adhering to the doctor's advice and remembering to take their medication more regularly after seeing it in writing. In our search for cost-effective health care measures, we may be overlooking the simple authority of written word.

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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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