Doctors’ notes on mental health shared with patients

“We all had some reservations,’’ said Dr. Michael Kahn, a psychiatrist who has worked at Beth Israel Deaconess for 20 years. “What about if a patient misinterpreted a note? Would they be upset about it? Would it confuse them?’’

But ultimately, he and his colleagues decided that sharing the notes could improve care by encouraging patients to more actively participate in their treatment, while inspiring providers to describe patients nonjudgmentally.

Patients can correct mistakes, such as a wrong medication dose. And rather than write a word such as “paranoid,'’ which to many people “means crazy or bad,’’ Kahn said he now uses less-loaded terms such as “persecutory anxiety.’’

Primary care providers at the Boston hospital, along with those at a handful of medical centers and physicians groups nationally, have been posting notes from medical visits in patients’ secure online medical records for several years — with mostly positive results.

But except for the Veterans Health Administration, which gives veterans online access to mental health notes, providers have hesitated to share psychiatric notes out of a belief that this approach is a minefield for patients. They worry patients will be rattled upon learning that their firm convictions are seen as delusions, or angered by diagnoses that feel harsh and stigmatizing.

Patients have a right under federal law to request their medical records, including doctors’ notes. But most patients do not ask for them, in part because the process is cumbersome and can take days or even weeks. But as electronic medical records become more widespread, it is far easier to share sensitive health information.

Stephen O’Neill, social work manager for psychiatry and primary care at Beth Israel Deaconess, said he has offered to share notes with patients informally for years. Most, including Lori, a 53-year-0ld woman who suffers from depression, have not taken him up on it. But now that he has made the summaries available online, she said she plans to read them.

On Wednesday, he showed her how the system works in his office and she read the notes from their appointment that day. “It’s not what I thought it would be,’’ she said.

Lori, who did not want her last name used because she feels mental health problems still carry a stigma, said she was surprised at the detail in O’Neill’s notes about issues she did not see as important. For example, she had discussed turning down a friend’s request for a significant favor.

After reading the entry, she understood how it related to her overall therapy. “We again reinforced. . . that she should share how she feels with her friend so that she does not internalize this,’’ O’Neill wrote.

Reading the notes is “a good way to see if you are on the same level,’’ Lori said. “Sometimes when I am in session with [him], I wonder does he understand what I am trying to get across. I get to see if he does.’’

In an opinion piece published in the Journal of the American Medical Association, Kahn and three colleagues argued that sharing notes could be particularly beneficial for patients who abuse drugs or alcohol, who are “often so used to being lectured that they tune out real-time discussions of harmful consequences.’’ Allowing them to read a doctor’s assessment in private “may diminish the need for defensive maneuvers,’’ the authors said.

Still, not all mental health providers are ready for this level of openness with patients.

Nina Douglass, who works in obstetrics and gynecology at Beth Israel Deaconess, is one of five social workers who declined to participate — for now. Some of her patients are addicted to drugs, while others are in abusive relationships. Douglass tells them at the outset that she is required to report abuse or neglect of a child to state officials. If she writes about a specific concern in a note, and the patient reads it, Douglass is worried the patient might flee rather than risk losing custody of the child.

“I absolutely share the hospital ethic of transparency,’’ she said. “But I want more time to see how this works.’’

At Geisinger Health System in Pennsylvania, where more than 1,300 providers share medical visit notes with 200,000 patients, mental health providers and pain specialists do not participate yet. The organization is planning to share psychiatric notes in the next six months, but Dr. Jonathan Darer, chief innovation officer, said doctors can exclude patients whom they feel will be harmed by easy access to visit notes, such as those with anxiety disorders who see even minor symptoms as catastrophic.

At Beth Israel Deaconess, mental health providers have identified at least 10 percent of their patients to participate in the project initially, and most are starting with those who are functioning at a high level.

“We thought, how can we find a safe place to start?’’ said Pamela Peck, clinical director for the psychiatry department. “Are there patients who would feel” upset by reading “about aspects of their psychiatric illness? That is a question that is still up for discussion.’’

Beth Israel Deaconess began encouraging providers to share medical notes nearly five years ago. Now, almost 2,300 doctors and nurse practitioners post notes for almost 225,000 patients. According to surveys done by the hospital, the vast majority want access to continue, though patients and caregivers have suggested changes.

Some patients want to approve what doctors write or to write responses. Some doctors want the option to hide notes, or portions of them, from patients or families, and want ways to communicate with colleagues privately, according to an opinion piece published in the New England Journal of Medicine earlier this year.

Partners HealthCare, the largest health care system in Massachusetts, is moving toward putting medical notes online, but is still debating whether to post mental health notes in patients’ records. One unanswered question is whether a psychiatrist’s notes are still useful and precise for other doctors, including those in the emergency room, if they are written with the knowledge that the patient can read them, said Dr. Gregg Meyer, chief clinical officer.

“One of the key points that physicians need to think about is whether the way we document care is going to fundamentally change,’’ he said. “First and foremost we have to make sure patient care is not compromised. We are watching their experience closely.’’

At Beth Israel Deaconess, doctors still have the option of putting certain notes in a locked area of the record, which patients cannot see and other doctors can access only if they provide written justification.

The hospital said it is too early to know how many patients are reading the mental health notes. Kahn spoke to one patient, a highly educated, successful woman whom he thought would jump at the chance. Kahn was surprised by her response.

“She said, ‘No, no no, I don’t want to read anything. I prefer not to look.’ ”

Liz Kowalczyk can be reached at kowalczyk@globe.com.