Can Patients Handle the Truth? Getting Access to Doctors’ Notes

A new study asks patients if they want to read what their doctor is writing in their chart. Overwhelmingly, the answer was yes. Not surprisingly, doctors resist.

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Thomas Tolstrup

The last time you were at the doctor’s office, and your physician scribbled or typed something into your chart, did you wonder what it said? If so, you’re in the majority: according to a new survey, more than 90% of patients said they would want to know.

Not surprisingly, most doctors were less than willing to share. In the OpenNotes trial, conducted at three primary care practices in Boston, Seattle and rural Pennsylvania, 254 physicians were asked whether they would be willing to make their office visit notes freely available to patients in their electronic health records for one year: 114 agreed, and 140 declined.

Office visit notes constitute include not only patients’ medical history, but also a record of what was discussed with the physician in the privacy of the exam room and in some cases, the doctors’ insights into patients’ prognoses and guesses about what might be ailing them. Of the doctors who agreed to participate, 69% to 81% said they thought the transparency was a good idea and beneficial for patients. Among the patients, 92% to 97% said having access to the notes would be helpful.

The difference in opinion is hardly surprising. After all, the U.S. health-care system is built on the paternalistic view that doctor-knows-best — the physician is the gatekeeper for providing and interpreting any information related to our medical care. Increasingly, however, patients are demanding transparency and taking back control of their health and their health records.

“The patient has been out of the loop until now,” says Dr. Tom Delbanco, professor of medicine at Harvard Medical School and senior author of the paper, published in the Annals of the Internal Medicine. “The basic notion of our trial is, ‘What right do you have to keep the patient out of the loop?’ Patients are legally allowed to see doctors’ notes, but we make it as hard as possible for them to get them. So what we are doing now is saying to patients, ‘This is all about you, this is your health and your record and we want to involve you more actively in your care.’”

The doctors’ and patients’ attitudes recorded by Delbanco and the study’s lead author, Jan Walker at Harvard and Beth Israel Deaconess Medical Center, are just the beginning. The team has collected further data on how doctors and patients reacted to open health records, and how they used the information. Delbanco and Walker plan to report on those results next year.

In the meantime, some of the potential impact is already becoming clear: among the doctors who declined to open their office notes, most said they were concerned that their assessments or interpretations of patients’ health information would be confusing or frightening to patients. Others worried that they would have to censor their written records to protect themselves from possible malpractice, if patients were offended by or misinterpreted their remarks.

But Dr. Kenneth Shine, executive vice chancellor of health affairs at the University of Texas, who wrote an accompanying editorial for the study, says those concerns may not be warranted. At the University of Texas, where patients have had access to their electronic records for several years now, and in some cases have been able to view their physicians’ notes as well, there has been no increase in malpractice cases. In fact, insurance premiums have dropped since the records went digital.

Another major concern expressed by doctors — that open notes will trigger more questions from patients and require more time on the physicians’ part to address — has failed to materialize within the University of Texas system. Indeed, many physicians noted that when patients have access to their records, it actually helps answer many of their questions and therefore saves the doctor time. “I’m not arguing that there aren’t going to be issues or problems,” says Shine. “But the fundamental principle of being transparent, of having a partnership between the doctor and patient, and facilitating communication is well borne out by experience.”

Open notes may even serve as a motivational tool for some patients, says Walker. “We’ve heard of cases where the doctor has been telling patients for years to lose weight, but they haven’t done it. But now when they read the notes, and see it in black and white, they can see how worried the doctor is, and they start changing their behavior,” she says.

In the trial, 75% of patients said it would improve their adherence to their medications, if they could see in their chart why the doctor thought they needed the drugs and how they might help them. Most patients also said having open notes would encourage them be more in control of their care and take better care of themselves. About 20% of patients said they would share the notes with friends and family, which may further increase the likelihood that they will follow their doctor’s advice and benefit from the care they receive.

Such openness may pose challenges in certain cases, however. Psychiatric patients represent a sensitive population when it comes to sharing medical information, and Walker and Delbanco recognize that these cases may require special protocols to ensure that patients are not exposed to undue harm by reading about how their physicians interpret their symptoms.

“We are opening a long line of inquiry,” says Delbanco. “We won’t be able to answer all of the questions immediately, but there are things we can do.” For one, he says he uses smaller words that patients can understand in describing their conditions and proposed treatment options. He also avoids abbreviations that patients may not be able to decode: one that might cause some misunderstanding is SOB, which doctors use as shorthand for “shortness of breath.”

But the fact that patients were overwhelmingly in favor of seeing their doctors’ notes suggests that physicians may be facing a sea change in the way they deliver care. “My personal opinion is that the availability of patient records to individuals who want to see them is an irresistible force that is not going to go away, and it’s important for physicians to accommodate to the changing environment,” says Shine. “They need to recognize that what they put in a chart is in fact likely available to not just patients but their families, and they should behave accordingly.”

Alice Park is a writer at TIME. Find her on Twitter at @aliceparkny. You can also continue the discussion on TIME’s Facebook page and on Twitter at @TIME.