BOSTON — For years, the woman went to a Boston hospital to talk to a therapist about being depressed and overweight. The therapist, listening closely, asked questions and jotted down notes on a memo pad.
Until recently, the 54-year-old woman didn’t know what her therapist was writing. Then, last month, her therapist offered to share his notes with her regularly.
Lori, who for privacy reasons did not want her last name used, initially was reluctant. She didn’t want to know what her shrink was thinking. What if he wrote, “She’s really going crazy”?
But when she read two pages of notes from two visits last month, she was pleasantly surprised by the level of detail. He wrote, for example, about how much she disliked using the treadmill. “He really is listening,” she said.
Lori is among several hundred patients taking part in an experiment at Beth Israel Deaconess Medical Center that began March 1 and gives them electronic access to therapy notes written by their psychiatrists, psychologists and social workers. Beth Israel is the first private hospital system to do so, and the practice has set off a spirited debate among mental-health professionals and patients.
Supporters argue that note-sharing provides many benefits. More transparency, they say, reduces the stigma and isolation of mental illness while boosting patients’ self-image. They also say that having patients read about their problems could empower them to change their behaviors in positive ways.
Other mental-health practitioners are leery, and some at Beth Israel have decided against taking part in the program for now. They say that therapists’ notes about patients’ behaviors and feelings are fundamentally different from medical assessments about diabetes and hypertension. Some patients could feel unfairly judged, they warn. What if schizophrenia patients, for example, read that their firm convictions were seen as delusional?
And would psychiatrists and therapists, worried about patients’ reactions, censor their own note-taking?
“Bringing transparency into mental health feels like entering a minefield, triggering clinicians’ worst fears about sharing notes with patients,” Michael Kahn, a psychiatrist at Beth Israel, wrote in an article in the Journal of the American Medical Association last month. Kahn is taking part in the pilot program.
“In principle, I’m all for it,” said Jeffrey Lieberman, past president of the American Psychiatric Association. He said note-sharing was a way to handle mental illnesses that was like the approach to nonpsychiatric ailments.
But, he added: “The devil is in the details. How you manage complexities, that’s where we are right now. They’re in uncharted waters.”
Beth Israel’s pilot program grew out of a national initiative, called Open Notes, that the rest of the hospital started more than a year ago for outpatient medical — but not behavioral health — cases. Led by Tom Delbanco, founding chief of the division of general medicine and primary care at Beth Israel, and Jan Walker, a hospital nurse, the program is part of a growing movement to give patients full access to their medical records.
The mental-health pilot began March 1. The program gives participating patients electronic access to their mental health notes for the first time. (The notes have always been part of the electronic health record; doctors have access to them, but only for valid clinical reasons.)
“I feel patients have as equal a right to see what the doctor writes when their minds hurt as when their knees hurt,” Delbanco said.
Patients can access the encryption-protected notes only through a secure portal and can read them on their home computers. In Lori’s case, electronic access had not yet been activated, so she read paper printouts that her therapist mailed to her.
All 15 clinicians in the hospital’s psychiatry department are participating. They have offered 10 percent of their patients — 350 people — access to their notes, according to Pam Peck, a psychiatrist who is managing the department’s participation. Individual clinicians are selecting those patients they feel could safely read the notes at home.
On April 1, two dozen social workers at the hospital began offering notes to 360 of their patients, said Stephen O’Neill, social-work manager for psychiatry and primary care at the hospital. Each participating patient must have a computer and Internet connection. Individual social workers decide whom to invite; most patients have diagnoses of depression and anxiety.
Victims of domestic violence are excluded out of concern that their partners might see the notes.
Clinicians say they have been surprised by the feedback. Some patients have been eager to see the notes. Others are less interested because “it’s not that big a deal,” O’Neill said. One patient told his social worker, Deborah Judd, that his treatment was like taking his car in for repairs: He trusted the mechanic and did not want to look under the hood.
Five of the 29 social workers who bill insurance for outpatient services have declined to share their notes. Some say they are worried that some people may not understand the diagnoses or that patients with paranoid thoughts might react badly to reading certain observations while alone at home.
Others fear that note-sharing could affect the core of therapy.
“It is VERY important to consider that the relationship between therapist and patient is an extremely human and personal one and that this is part of what is healing,” one social worker wrote in an email to O’Neill explaining why she did not want to participate in the program.
“I believe that adding the dynamic of computerized notes in the middle of this relationship will lessen its effectiveness,” she added. She did not want to be identified, to protect her patients’ privacy.
Nina Douglass, a social worker in obstetrics and gynecology, is also opting out for now. Many of her patients have drug addictions and do not always understand the risks for their pregnancies. Douglass is worried that she might “inadvertently alienate” these patients if she is not “very thoughtful of how I write that note.”
Under federal law, patients have a right to request all their health records, including those involving mental health, although the process can be lengthy. (In special cases, doctors can withhold information if they feel it could endanger patients or others.) It is up to individual health systems and clinicians to decide how best to provide those records. Only some health systems have electronic records, and only the Boston pilot project and the Department of Veterans Affairs allow patients to see their mental-health notes online.
The Open Notes program — which gives patients secure electronic access to their medical notes — is in place at several health systems, including Beth Israel, the Mayo Clinic, the Cleveland Clinic and Geisinger Health System. VA has a similar system.
At Beth Israel, outpatient medical notes have been available since July 2013. All but about a dozen of the hospital’s 800 doctors use that system. More than 70,000 medical patients use a secure, confidential portal to view their doctors’ notes. Despite doctors’ great initial fear that they would be overwhelmed by patients asking follow-up questions, “the expected avalanche did not materialize,” said Walker, the Beth Israel nurse.
A group of researchers from five health systems surveyed patients who use the online system to view their medical notes. The researchers found that most felt more in control of their care. About one-third of patients surveyed had privacy concerns, but that did not prevent them from accessing the notes.
At VA, about 1.5 million veterans have been able to see their clinical notes since January 2013, including notes related to mental-health visits. Anecdotal information suggests that patients who read their notes want to be more involved in their medical care, said Susan Woods, a physician at the Portland VA Medical Center and director of patient experience for VA’s electronic access initiatives.
VA has just begun studying the interactions of veterans who read their mental-health notes with their therapists, she said.
Geisinger Health System in Pennsylvania, which already has 1,302 medical-care providers giving access to visit notes, with 220,000 patients using the system, is also thinking about sharing that access for psychiatric notes this summer. But patients with anxiety would probably be excluded, Geisinger spokesman Michael Ferlazzo said.
Lori, the woman who is in therapy at Beth Israel for depression, said reading the notes boosted her confidence and self-esteem. Her therapist is O’Neill. In one note, he described a situation in which Lori felt a friend was laughing at her. He wrote: “We explored that [the friend] was laughing with her rather than at her.” He also wrote that she would work on improving her self-observation skills by being more aware of “trigger points” and find ways to address concerns “more directly so as to be less prone to internalizing/keeping inside which only worsens her depression.”
She smacked her forehead, saying, “Oh yeah, yeah.” She had forgotten about this. “See, this is why notes are good.”
O’Neill has offered his patients access to his notes over the years and has found that this helps even seriously ill patients. One patient with major depression who has regularly come close to being hospitalized read that O’Neill thought she was “very resilient.” When she saw that, “it helped her to feel confident,” he said.
How much detail is in a note is up to individual therapists. Clinicians try to use terms that are precise for other doctors but are still understandable to patients. Some clinicians simply assume their patients are going to read their notes. Social worker Judd recently wrote a note about a patient with agoraphobia, an anxiety disorder in which people fear places or situations that cause them to panic and feel trapped. Initially, Judd wrote that the two discussed the issue “at some length.” But concerned that the patient might find those words judgmental, Judd changed “at some length” to “in some detail.”
After Lori read a note that referred to her “affect dysregulation,” she asked O’Neill during their next session to explain it. He told her it meant her emotions sometimes prevented her from functioning as well as she could. She said she has not seen that particular term in subsequent notes.
Beth Israel is reviewing patient and clinician feedback every three months over the next year before deciding what comes next.
“At the end of the experiment, will we say, ‘It’s not as scary as we thought,’ or will we say, ‘We’re uncovering a whole can of worms here’?” said Barbara Sarnoff Lee, head of the social-work department. Part of the reason that mental health is so stigmatized, she said, is that people do not see what happens in the relationship between the clinician and patient.
By opening up the notes, she said, “we want to take the mystery out from behind the curtain, if you will.”