What the Doctor Is Really Thinking

After meeting with patients, doctors typically jot down notes on a range of topics, from musings about possible diagnoses to observations about how a patient is getting along with a spouse. The notes are used to justify the bill, and may be audited. But the main idea is to have a written record with insights into the patient's condition for the next visit or for other doctors to see.

A study currently under way, called the OpenNotes project, is looking at what happens when doctors' notes become available for a patient to read, usually on electronic medical records. In a report on the early stages of the study, published Tuesday in the Annals of Internal Medicine, researchers say that inviting patients to review the records can improve patient understanding of their health and get them to stick to their treatment regimens more closely.

But researchers also point to possible downsides: Patients may panic if their doctor speculates in writing about cancer or heart disease, leading to a flood of follow-up calls and emails. And doctors say they worry that some medical terms can be taken the wrong way by patients. For instance, the phrase "the patient appears SOB" refers to shortness of breath, not a derogatory designation. And OD is short for oculus dexter, or right eye, not for overdose.

"If you are a patient that just goes in once a year for a checkup, the doctor's notes might be not that useful. But if you have a lot of medical problems, it helps you ask the doctor the right questions and lets you know what's going on," says Jeanne Hallissey, a patient at Beth Israel Deaconess Medical Center in Boston, who began reading her doctor's notes as part of the study.

Medical providers have been stepping up efforts to improve doctor-patient communication, in part because studies show it can result in better patient outcomes. The introduction of electronic medical records in recent years has allowed patients to contact their doctors by email, log on to secure websites to get lab results and get links to health information recommended by their doctors.

The year-long OpenNotes study, funded with a $1.5 million grant from the Robert Wood Johnson Foundation, involves 25,000 patients and their primary-care physicians at Beth Israel Deaconess, Geisinger Health System in Danville, Pa., and Harborview Medical Center in Seattle. "We want to break down an important wall that currently separates patients from those who care for them," says lead investigator Tom Delbanco, a Harvard Medical School professor who treats patients at Beth Israel.

Patients have a legal right to see their entire medical record including doctor's notes. An exception are psychiatric notes, which doctors can withhold if they judge it to be in the patient's best interest. But doctors and hospitals don't automatically include notes when a patient requests records, Dr. Delbanco says, and "we've made it as difficult as possible for patients to get them."

Patients often forget most of what they've heard after they leave the doctor's office, says Jan Walker, a Beth Israel nurse who is working on the OpenNotes project. Reading doctors' notes allows patients to review everything at home and share information with family and others who may be involved in their care.

Michael Meltsner, 73, a law professor and family therapist in Boston, logged onto Beth Israel's electronic medical record site for patients to view Dr. Delbanco's notes after an April visit. He showed his wife the notes from the visit, which was to discuss general aging issues and medication monitoring.

"Whenever we go to a doctor and anything is said that is the least bit difficult or problematic, we get a form of modified amnesia, " Mr. Meltsner says. "It's great to be able to go home and pull up the doctor's note a few days later and say, 'oh, so that's what I've got,' or 'that's what he said.' "

But, Mr. Meltsner adds, "it's going to take some work to walk people through it who are anxious and don't understand medical terminology."

Though the OpenNotes project doesn't ask doctors to dumb down their notes to make them easier for patients to understand, Dr. Delbanco says he has started using clearer language, fewer abbreviations and less technical jargon. But "I don't leave anything out. If I'm worrying about cancer the patient is probably worrying about it more than I am."

In one note Dr. Delbanco wrote about a patient, for instance, the patient wanted to stop taking the cholesterol-lowering statin that he had been on for six years. The doctor noted that the patient had lost weight in that time, and was now exercising more. "So we shall stop it, and he will return fasting in about six weeks to see what is going on. It is worth a try," the doctor wrote.

Other big health-care providers have been watching the OpenNotes study. Kaiser Permanente, based in Oakland, Calif., says it doesn't plan to offer its doctors' notes routinely on its patient website. A Kaiser spokeswoman says it may be confusing to patients to see raw doctor's notes with terminology that doesn't make sense to the average person. But, she says, if patients really want a copy of the notes they can ask. Kaiser currently allows members to check their lab results online, and exchange emails with their doctor over secure messaging systems. Its website also makes available to patients the doctors' after-visit summaries, but not full notes.

Another managed-care provider, Group Health Cooperative, of Seattle, is more open than Kaiser to the idea of showing patients notes. "I believe that we will eventually do this," says Matthew Handley, associate medical director of quality and informatics.

Dr. Handley says doctors may initially be hesitant to show patients their notes, much as they initially worried when Group Heath began providing lab results to patients online. But that has proven a useful and popular service for patients. "The old narrative is that we had to protect doctors from patients, but we've found that patients are very respectful of doctors' time, and can handle information," he says.

Ms. Hallissey, the Beth Israel patient, has had complications of surgery for diverticulitis and keeps close tabs on her medical records and lab results online. When she began reading her doctor's notes this spring, a glitch allowed her to see not only her primary-care doctor's notes, but also the notes of the surgeon who had performed her procedure. "It was really interesting reading to find out what happened in a five-hour surgery," says Ms. Hallisey. When she didn't understand words, she searched out their meanings online. She learned, for example, that a description of her as "supine" meant she was laying in a face-up position.

Dr. Delbanco, Ms. Hallissey's physician, says he hopes specialists and surgeons eventually will open their notes to patients as well.

Some aspects of opening notes to patients are "going to be a hassle for doctors," including communicating in language that is understandable to patients, but also precise medically, says Kelly Ford, a Beth Israel internist. Still, Dr. Ford agreed to participate in the OpenNotes project because she believes patients have the right to access their full medical records. "It's weird that someone's record of their own body is under the private domain of somebody else," she says.

Jennifer Potter, a Beth Israel physician who runs two women's health clinics and teaches, declined to participate in the OpenNotes study. She says that she already spends a great deal of time documenting the care she administers and finds that patients too often email and call her about inconsequential lab tests. Also, Dr. Potter says she prefers to use the billing and coding abbreviations and medical shorthand understood only by doctors.

"Theoretically it sounds wonderful for patients to be able to access their entire medical record," Dr. Potter says. "But with so many doctors leaving primary care because they can't manage the loads they already have, it's just an added burden."