Opening up the doctor’s notebook

If you could see what your doctor is writing about you in your medical record, would this hurt or enhance the doctor-patient relationship?

A new survey on the progress of the OpenNotes project found that the majority of patients – more than 90 percent – are supportive and even enthusiastic about being able to read the doctor’s notes. But among physicians, the reaction was more mixed. Although many believe that sharing their notes can be beneficial, doctors in general have far more reservations about it than patients do.

The findings of the web-based survey appeared a couple of weeks ago in the Annals of Internal Medicine.

I’ve been following the OpenNotes project since it was launched some 18 months ago (I’ve blogged about it here and here). A quick summary: Lab reports, test results and other portions of the medical record increasingly are being shared with patients in the name of helping them become more informed and engaged in their care, not to mention that it’s the patient’s legal right to see their chart. But patients historically have had more difficult access to the doctor’s notes, which typically consist of subjective observations about the encounter – what the patient said, how he or she behaved, the doctor’s thoughts about a potential diagnosis and so on.

Depending on your point of view, sharing the doctor’s notes could enhance patient care or could be downright harmful. So far, however, there’s little actual evidence to support either of these positions. The OpenNotes project, which involves 100 doctors and 21,000 patients in three states, aims to test what happens when patients have increased access to the doctor’s notes.

That there would be mixed feelings about this is no surprise. There’s in fact a rather significant gap in how patients and clinicians perceive the need for information. Patients increasingly want more information but many clinicians question how much should be shared and how well patients will be able to understand it.

Recent debate at the Bioethics Discussion Blog shows just how wide this gap can be. Allowing patients unrestricted access to their full medical record is “a bad idea,” one person wrote. “There’s no reason for most people to have complete, unfettered access to their medical records, whether guaranteed by law or not.”

Others vehemently disagreed. Wrote one commenter:

I believe that providers who don’t think patients should have complete access to their own medical records do so for one of two reasons:

1. They have an irrational fear of “losing control” of the provider/patient relationship by not being able to be the gatekeeper to what the patient sees.

2. They have something to hide.

Worries about sharing the medical record aren’t exclusive to doctors. I once picked up my medical chart only to have a nurse literally grab it out of my hands and tell me I wasn’t supposed to read it. If she thought she was somehow protecting me, she was wrong; it left me wondering what exactly was in my medical record, and it made me trust this particular hospital a whole lot less.

Although the OpenNotes project is, on its surface, about giving patients more access to their medical information, in a deeper sense it’s about something else: the cultural differences that tend to persist between the world of health care and the world of being a patient, between the doctor’s role as keeper of the information and the patient’s growing expectation of being more participatory.

Do providers really need to worry so much about what patients are (and aren’t) allowed to see?

“These fears are overreactions,” writes Dr. Thomas Feeley of the renowned M.D. Anderson Cancer Center in Houston.

M.D. Anderson has been giving patients access to their electronic medical record since 2009, he writes. “While initially doctors complained that they had to explain more to patients about what was written in their records, the doctors soon came to realize the benefit of having patients who are more informed about their care plan and lab results.”

If the topic is volatile, maybe it’s because of the tensions it reveals between providers and patients, writes Stephen Downs at The Health Care Blog. “From my perspective, it appears that many doctors are underestimating their patients and that this underestimation could lead to less patient engagement and ultimately poorer care.”

Many clinicians seem to believe their patients can’t handle the truth, while patients overwhelmingly say otherwise, he wrote. “What do you all make of that gap? How serious an issue is it?”

The OpenNotes project undoubtedly will tell us more when the final results are published. In the meantime, this will continue to be an interesting debate.