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'Entering a Minefield': The OpenNotes Mental Health Conundrum

April 8, 2014
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In the past, we at Healthcare Informatics have written and blogged extensively about the OpenNotes movement, which is an initiative that invites patients to review their visit notes written by their doctors, nurses, or other clinicians.

By all accounts, the movement has been an unequivocal success. At Beth Israel Deaconess Medical Center in Boston, the Danville, Pa.-based Geisinger Health System, and HarborView Medical Center in Seattle, the OpenNotes initiative has led to more engaged patients.  In a survey, it was revealed up to 87 percent of the patients who opened a note and filled out a post-intervention survey said that OpenNotes put them in greater control of their care, up to 78 percent said it help increased their medication adherence, and up to 84 percent reported that it helped them better remember their plan of care. Every single provider opted to stay in the OpenNotes initiative once the initial test run was completed.

With those pilots thriving, its expansion was predictable.  This week, nine health systems and medical groups in the Northwest announced their participation in the movement, which will give more than one million patients in Oregon and Southwest Washington electronic access to the notes their providers include in medical records. It’s the first time OpenNotes has been embraced simultaneously throughout an entire region.

I have no doubt that more provider organizations will embrace OpenNotes. The scope of this movement will go well beyond its humble beginnings in Boston, Pennsylvania, and Seattle. More patients are going to want access to their clinical data. It makes sense and it doesn’t take anything but a minor culture shift to accomplish. To me, it’s settled.

Thus, it’s time to explore, as the folks at Beth Israel Deaconess have begun to do so, a new question that is now being asked in regards to OpenNotes. What about mental health patients? Should their doctors’ electronic health record notes be shared with them? There is, after all, a big difference between sharing a doctor’s electronic note on a clinical illness and a patient’s mental illness.

The Boston Globe ran something on this, detailing how a number of Beth Israel mental health providers have begun to share their notes with 650 patients. Not everyone is on board. According to Michael Kahn, M.D., a psychiatrist at Beth Israel interviewed by The Globe, many of the providers were hesitant to share notes with their mental health patients. They said these kinds of notes could potentially confuse or upset them, perhaps validating fears they might have over being seen as delusional.  It could even get certain patients to flee, says one clinician interviewed for the piece.

Even Beth Israel, which is a pioneer in this area, is starting this project with the safest mental health patients they have—those who are the highest functioning.  Other providers, according to The Globe, like Partners Healthcare, also in Boston, are still debating whether or not to go ahead and share notes with those patients at all.

Kahn, who wrote an opinion piece in the Journal of the American Medical Association (JAMA), says that this is a good idea. He says that it can catalyze behavior change and open their eyes more clearly than any spoken word. He also says there are ways to share notes with mental health patients that don’t invite conflict, such as highlighting patient strengths in notes.

“For many patients, the opportunity to read a treatment note can help improve accuracy and reduce stigma. And that may encourage patients to address their mental health issues more actively,” Kahn wrote in JAMA.

Still, Kahn acknowledges that this kind of transparency is akin to entering a minefield. The fact that before Beth Israel, the Veterans Administration was the only provider organization to go down this path, basically confirms that. No one is sure if it’s a good idea yet.

Eventually, though, I believe this will become a standard of practice, just like the clinical side of OpenNotes is quickly becoming accepted. People are going to want these notes, mental health patients especially. It’s up to doctors to figure out a process that works for them.

Maybe it’s keeping two sets of notes. Maybe it’s taking up Kahn’s suggestions and framing notes in a way that won’t offend the patient. Maybe it’s something else. Whatever it is, providers better be ready.

Please feel free to respond in the comment section below or on Twitter by following me at @HCI_GPerna