Transparency Now

06.02.14

The Movement for Patient Access to Doctors’ Notes Is Growing

To level the playing field, some believe patients should be able to see what their doctor is writing about them. But note-sharing with mental health patients has been slower to develop.

There’s a scene in the first season of comedian Louis C.K.’s FX series Louie where he tries to describe his feelings to his therapist. When he looks at his young daughter, he says, he often sees his mother.

“So your mother, is she there?” asks the doctor. No, says the confused C.K, who expected the figurative nature of his statement to be obvious. He just “sees” her face. “Is she standing right in front of her?” the doctor asks. “Are you at your mother’s house?”

C.K.’s standards for doctors might be questionable. But at the very least, the scene shows that understanding and communication between doctor and patient can always be helped along.

The OpenNotes initiative, which seeks to enable easier access for patients to doctor’s notes, might have helped. The idea is that if doctor’s notes were more transparent, then a patient would become more involved in their own treatment. And the “playing field” between doctor and patient also is leveled somewhat.

“We doctors hide from patients what we feel about them and what we think, and I think that it is a mistake,” said Tom Delbanco, professor of general medicine and primary care at Harvard Medical School. “There is absolutely no reason patients should not know what we are thinking about them and doing.”

Delbanco said the use of OpenNotes—which he leads with Jan Walker, a registered nurse and researcher at Harvard Medical School—has grown from 13,500 patients to 3 million today.

But note-sharing with patients with mental health problems has been slower to develop. Concerns exist over whether a patient’s mental condition could worsen after reading what a psychologist has written about them, or whether a patient could feel objectified and pathologized.

“The instinct has been, ‘That’s different, mental health is different, don’t touch it’—I think that’s nonsense,” said Delbanco. “I think if you say you’re ill because your knee hurts, or I think you’re crazy because you think blue is green, you should be the first to know and my job would be to help you with that.”

Patients participating in a pilot study at the Harvard Medical School teaching hospital Beth Israel Deaconess Medical Center started note-sharing with their psychiatrists, psychologists, and social workers in March this year. Because the pilot project is still in its infancy, the data aren’t there yet. But Delbanco predicts it will take off in the same way note-sharing with the earlier patients did. And it will go beyond the United States, he said.

“The world is becoming more transparent. There are fewer secrets,” he said. “It really is an expression of that moving into medicine. I don’t see why this should be constrained by the Atlantic.”

Outside the U.S., mental health-care professionals debate among themselves how much transparency can exist between themselves and patients. The discussion often is shaped by allegiances to particular schools of thought, such as Sigmund Freud’s concept of “therapeutic abstinence.” The idea that iron-clad barriers between therapist and patient must exist, and preclude such transparency, some would argue.

Andreas Feher, a psychoanalyst and psychiatrist in private practice, said he has come up against this line of thinking many times in Germany. He doesn’t do note-sharing via a password-protected electronic patient portal but reads his notes from the previous session aloud to his patients.

“My colleagues say, ‘Those are your notes, that is none of their business.’ They think I’m crazy—I don’t really understand it,” Feher said. “In any case, it isn’t really done here. I don’t know anyone who does it. But I don’t care, I do it anyway.”

Asked why he did so if note-sharing was considered so unorthodox in Germany, he said it helped him remember what happened from sessions that could run up to two hours. In his experience, only about one in 15 patients ever has a problem with it, he said.

Despite how useful he found note-sharing and how much patients seemed to like it, Feher said he was skeptical it would be widely adopted in the near future.

“Here, the barriers are perceived so important,” he said. “I know therapists who won’t go to the cinema if they know a patient might be there.”

To them, note-sharing involves breaking down barriers they don’t want broken down, Feher said.

“It seems strange to me that other professionals—maybe those not even directly involved in the case—can potentially read some of these notes that the client can’t.”

“It won’t happen in my lifetime,” he said. “It’s a shame. I would have found that good.”

But cultural attitudes and prevailing schools of thought aren’t the only things tilting the debate. Bureaucratic challenges can sometimes play a role.

In most countries—including the U.S., the U.K., and Germany—patients generally have a right to access their medical records. But requesting the notes that are part of the records is often a bureaucratic process, and the rules make it difficult for clinicians simply to offer to show their notes to patients, said David Harper, a professor of clinical psychology at the University of East London.

“Most clinical psychologists work for the National Health Service (NHS). They are employees,” he said. “Therefore the notes you make don’t belong to you, technically, they belong to the secretary of state. As soon as you write them, they are NHS property.”

Harper supports transparency as the default setting, he said.

“In the U.K., care records are increasingly stored electronically, with different professionals able to read anyone’s notes,” he said. “It seems strange to me that other professionals—maybe those not even directly involved in the case—can potentially read some of these notes that the client can’t.”

But of course, any sharing with mental health patients needs to be done carefully, he said.

“If someone is feeling fairly stable mentally, and resilient, then they could read lots of different things and be OK with them,” said Harper. “But if they were feeling very vulnerable, there were some elements in the notes that might make them feel more vulnerable.”

Charlotte Marshall, a privately practicing clinical psychologist in Adelaide, South Australia echoed Harper. Sharing notes could be “counterproductive” in situations where a client has symptoms of paranoia and plans of action and safety concerns are written in them, she said.

“The clinical setting in which note-sharing is hypothetically occurring is important. For instance, notes taken in an inpatient psychiatric setting where [the client] might be detained would be quite different to notes from a private practitioner’s session on a client with an anxiety disorder,” she said.

For her personal practice, she said she didn’t see the need to share her notes “as a matter of course” and that it wasn’t common practice in Australia. She does, however, generally tell her clients they are welcome to her notes any time, she noted.

“But in my years of experience, nobody ever expressed particular interest,” she said. “I try to be as transparent as possible on my thoughts as to her thoughts on what may be going on with them. What is in my notes is unlikely to be of concern or surprise to my clients, so perhaps they don’t feel the need to see my notes.”

Marshall said she didn’t think note-sharing was becoming the norm in Australia—and how it will fare in the rest of the world is not yet clear.

However, Delbanco said the experiences of the original project have left him optimistic the movement will be taken up across the board.

“If you had told me that we would go from 20,000 to 3 million note-sharing Americans in 18 months, I would have thought you were smoking marijuana,” he said. “But it happened. Mental health notes will spread just as rapidly because it is riding on the wave of transparency. This is a global phenomenon.”