If patients and doctors both have easy access to the notes the doctor takes during their office visits, will it change their behavior?
That's a question that an experiment called OpenNotes aims to answer by letting patients of more than 100 primary care doctors in three states see the notes online.
In December, researchers reported the results of surveys taken before the project started in 2010 in which patients and physicians were asked about their attitudes toward making such information available.
Published in the Annals of Internal Medicine, the study found that while patients were very gung ho to see the notes — more than 90 percent expected them to be helpful — physicians were much likely to think that notes sharing was a potential Pandora's box of trouble.
"Notes are the things people never see," says Jan Walker, a nurse at Beth Israel Deaconess Medical Center in Boston and the study's lead author. "Yet if you have a lab result or a radiology result, the notes are the information that provides context for why this was done in the first place."
OpenNotes is funded by the Robert Wood Johnson Foundation, which also is an underwriter of NPR.
Researchers are still analyzing the results of the year-long study. But Walker says what's beginning to emerge is that the effect of seeing physician notes in black and white can be huge. A notation describing a patient as "obese," for example, may be much more effective than a physician's verbal instruction to lose weight at bringing home the seriousness of a problem and the need to do something about it.
"It's very motivating," says Walker. Seeing the doctor's notes can help remind a patient about what was said during a visit that may have been fraught with anxiety. Instead of having to rely on a patient's vague description of the appointment, office visit notes can give caregivers the lowdown on someone's health.
"Someone comes home and says the visit was fine, but the notes say their heart failure was a bit worse," says Walker. It's not necessarily all good, however. In the study, up to a third of participating physicians said opening up their notes might change the way they documented such sensitive topics as obesity, substance abuse, mental health problems or cancer. And about the same proportion of the doctors surveyed for the project decided not to take part in it.
Meanwhile, patients said they might withhold information that they didn't want recorded in the notes. So in some instances, opening up the communication process could actually limit what gets communicated. Go figure.