BOSTON -- About 700 mental-health patients at Beth Israel Deaconess Medical Center are being allowed to read their therapists' notes about them in a novel experiment.
Within days of a session, they can access therapists' notes using computers or smartphones.
"We're creating a revolution," said Dr. Tom Delbanco. "Some people are aghast." Delbanco, a professor of medicine at Harvard University, is a leading proponent of giving patients access to notes by therapists as well as by physicians.
The pilot project has raised questions in the mental-health community. Should patients with schizophrenia, for example, who might stop taking their medication after reading that they are doing well, have the same access to treatment notes as those with irritable bowel syndrome? Which patients will benefit and which might be harmed? How will the notes alter a therapeutic relationship built on face-to-face exchanges? What will be the impact on confidentiality and privacy?
Do patients really want to know what their therapists think?
Dr. Kenneth Duckworth, who is the medical director of the National Alliance on Mental Illness, an advocacy group, said: "I've offered to share my notes with patients and they'll say, 'No, I'm good.' But it's a good concept that should be researched."
The practice is so new that the Department of Veterans Affairs, which
began making medical and mental-health records available online last year, is only just beginning to study the effect on mental-health patients.
Older studies from psychiatric wards where patients read charts with doctors found that the patients were confused or offended by the content. But as doctors helped interpret their notes, patients began participating more in their care.
Although Beth Israel therapists report that some patients have no interest in reading their notes, responses from a few have been positive and powerful.
Stacey Whiteman, 52, a former executive secretary in Needham, Mass., with multiple sclerosis, faces growing cognitive as well as physical difficulties. The disease has shaken her self-image and relationships; her psychological health affects her willingness to manage the disease. She finds that her medical and mental-health notes complement each other.
"Yes, the therapy notes can be hard to read, and sometimes I wonder, 'Really, I said all of that?'" she said. "But there's no question that reading this stuff just charges you back up to moving forward."
COLLABORATION
While such a program may be feasible in larger systems like Beth Israel, a Harvard hospital, some solo practitioners fear it may require too much time and technological sophistication.
But Peggy Kriss, a psychologist in Newton, Mass., is an early adopter. For more than a year she has maintained a website with private pages for patients on which she posts session notes, as well as articles, videos and meditations.
Toward the end of each session, she and the patient begin the note together, defining the key points that have been raised.
Kriss said that for most of her patients, online notes have become the new normal. One described them to her as a security blanket between appointments.
Some write replies. "An OCD patient told me I was spelling things wrong," Kriss said. "So I said, 'I'm just modeling anti-perfectionism for you.'"
OPENNOTES
The Beth Israel project grew out of OpenNotes, a program by Delbanco and his colleagues that made physicians' notes accessible to 22,000 patients at three institutions. A 2011 study showed that patients responded positively and became more involved in their care.
More systems are adopting the model. At least 3 million patients now have swift access to office visit notes, including observations and recommendations. But even those institutions have hesitated to share mental-health notes.
Critics have raised concerns about whether reading notes could prompt anxiety and rejection of treatment. What will happen if the patient posts the notes on Facebook, inviting comment?
Proponents of access say that such notes, which include extensive diagnostic reports, are already available to other doctors and to insurers. Although patients have long had the right to their records, the process to obtain copies can be protracted. If a doctor thinks that reading notes would be harmful to the patient or others, they can be withheld.
Mindful of such pitfalls, the Beth Israel psychiatrists have offered notes initially only to 10 percent of patients.
ActiveStyle on 07/14/2014