We sat down with Steve O’Neill, Social Work Manager for Psychiatry, Primary Care, Pain Management and Infectious Disease, as well as Associate Director of the Ethics Support Service at Beth Israel Deaconess Medical Center (BIDMC). Steve is also a Clinical Instructor in the Department of Social Medicine and a Faculty Associate in the Center for Bioethics at Harvard Medical School. We asked him why he thinks sharing notes may become increasingly important for both patients and mental health professionals.
How did you get involved with OpenNotes?
I heard about OpenNotes from Tom Delbanco and Jan Walker when they first started the endeavor. I had worked closely with Tom in the past and already shared his convictions about the importance of transparency in healthcare as a way to cultivate better partnerships with patients. Thirty years ago, I began asking my own therapy patients if they wanted to see their notes, and I would print copies for those who did. That went very well for me and for those patients, much to my surprise. I had thought the notes would only cause pain but found the opposite to be true. So when Dr. Lachlan Forrow and I started the Ethics Services at BIDMC in 1998, we decided we would share our consult notes with patients and involve family members. Giving our consult notes headed off some potentially very difficult situations, so I became an advocate for OpenNotes early on. When we opened up specialty notes at Beth Israel Deaconess, I thought mental health notes should be a part of that rollout. In my role as Associate Director of the Ethics Support Service, I work with the social workers who provide most of the psychotherapy services at BIDMC, and I also practice as a therapist myself. Not only had my early experience of sharing notes been profoundly positive, but I also worry that not opening up therapy notes would unwittingly contribute to stigmatizing mental health patients.
Why is OpenNotes important for mental health?
Many patients don’t trust clinicians. They worry that we do things out of self-interest, rather than out of concern for them. OpenNotes helps us to be accountable to patients and keeps us even more patient centered. It helps the patients see that we’re doing right by them, and it allows them to clarify and even to correct things. Transparency can generate a lot of trust between health care providers and patients and is especially important in mental health where the development of a therapeutic alliance between the clinician and patient is so critical. Anything we can do to strengthen that trust can only help the therapy.
Can you give a specific example of how OpenNotes impacts mental health?
Yes, there are many, but one great example is a patient of mine who viewed everything with a negative frame of mind. She thought she was purely damaged goods—a terrible person—but I thought she was actually very resilient and had many strengths. She didn’t want to look at my notes because she thought they would only confirm her fears. It took her a couple of years, but she finally worked up the courage, and when she did read my notes, she felt they were fair and balanced and matched what I was saying during our sessions. Now, she reads the notes only periodically because she’s still anxious about what they might say. But when she does read them, they help her to reconsider her thoughts about herself and to think in a much more positive way. She uses them judiciously, and they are a great asset for her. Reading notes may not be right for every single patient, but open notes are a very useful tool for clinicians to have.
One thing I see quite often is that patients will print out their notes as a way to remind themselves of what they’re working on in therapy. So the notes function as a way of carrying the therapy forward in between sessions. This is especially helpful for patients who have trouble remembering things and are living moment to moment. It can be important for them to have something to refer back to and help keep them focused on their goals.
What’s next for OpenNotes and mental health?
We still have a lot of work to do in helping the therapist community to open up their notes. Therapists worry about extra work and backlash from patients, but we haven’t seen those play out in any of the implementations we know about. They also worry about the impact of reading notes on their patients: “What if our patients can’t handle reading their notes?” I think the real issue is whether or not we clinicians can handle sharing our notes! And again, the assumption that mental health patients might not be able to handle reading their notes further stigmatizes them.
By and large, the patients aren’t as anxious as we think they will be. Here’s an example of how open notes can be useful: One of my patients in group therapy did struggle when she read her notes alone between sessions. The group encouraged her to read notes only when she was coming to therapy, which she did. When she shared her therapy notes in the session, the group helped her see that she was distorting much of what was written. That was so helpful for her, and now, a couple of years later, she can recognize her cognitive distortions and read the notes between sessions. That’s terrific progress!
More health systems are opening up their mental health notes, including some that are opening notes to hospitalized patients and patients with addictions. To date, while 50 health systems across the nation have opened mental health notes to their patients, there’s still a lot of work to do.
A new development is OurNotes, which invites patients to contribute to their records in advance of an appointment and to let their clinician know about things they want to address in the session. From a mental health standpoint, I believe this could be particularly helpful with psychopharmacology patients, where clinicians can see ahead of time if patients are doing well, or struggling and needing adjustments to their medications. It could also be helpful for patients who are seen less often, possibly saving some visit time normally spent recounting events since the last visit. OurNotes is currently being piloted in primary care; I look forward to using it with mental health patients.
Can you share a story from your own experience of sharing mental health notes that has really impacted you as a clinician?
Yes, one experience that was particularly impactful for me as a therapist was with a man I had been seeing for many years who struggled with depression following a deeply traumatizing event. In one of my notes several years later, I had described this event, but I described it incorrectly. The details were incredibly important to my patient, and he asked me to correct it; I did so in an addendum to the note. He read the addendum and saw that I took his concerns seriously. That simple step generated a lot of trust, and he subsequently shared with me that he long had additional deep-seated beliefs about the event that he had never shared with anyone. Sharing those notes was instrumental in creating an environment where he felt comfortable enough to share that with me. I don’t know if he ever would have told me had he not seen my note. We often think we know the whole story when there are critical things we might be missing. That experience really drove home the value of sharing notes for me.