Mental Health

How can sharing mental health notes help patients?

HIPAA grants patients the right to receive and review their full medical records, including psychotherapy notes in electronic records that contain documentation of encounters and are used to bill for services. Only psychotherapy notes held separately can be kept from patients without their permission, and such rules vary state by state. As of April 5, 2021, all U.S. healthcare systems are required to electronically share clinicians’ visit notes with patients at no charge. This is required as part of the 21st Century Cures Act program rule on Interoperability, Information Blocking & ONC Health IT Certification. Sharing mental health notes is required by this rule, however, “process recordings” or side notes do not need to be shared.

Not all patients choose to read their therapy notes, but many do. Patients and health care professionals alike have reported benefits, including: empowering patients to address mental health and illness actively, reducing stigma associated with mental illness and its treatment, and enhancing the therapeutic alliance. For some patients, open notes serve also to extend the therapy between sessions.

Potential benefits:

Demonstrating respect and reducing stigma. Open notes can help bridge the gap between physical and mental health care. The whole person approach that results helps assure that patients are managed similarly, whether receiving support for a mental or for a physical ailment. To treat the two differently may unwittingly reinforce stigma most therapists are trying to diminish, adding to barriers that often prevent patients from seeking treatment in the first place.

Empowering patients. The act of inviting patients to read what their health professionals write implies that patients are competent and capable of reading and discussing their own notes. This open, respectful approach can mitigate inherent power imbalances in health professional-patient relationships. Additionally, by using the note to reinforce patients’ positive traits and to place their circumstances in a broader context, open notes can improve patients’ self-awareness and self-confidence.

Organizing care and tracking progress. Offering patients access to mental health notes provides a therapeutic opportunity to help patients manage their illness more effectively. Reading notes can help patients understand their treatment and progress (or lack thereof). It can remind patients of their responsibilities in their care, including ‘homework’ or follow-up issues to be worked on between sessions. Moreover, transparency in therapists’ notes can be a type of modeling that, in turn, encourages patients to be more open and transparent.

“I have a tough time recognizing that I’ve made progress. So it’s nice to read this as a reminder.”

— David, patient, New York Times

Providing a tool for behavior change. Patients may find that a balanced discussion facilitated by open therapy notes helps with anxieties they otherwise hold alone. In addition, health professionals in the OpenNotes study found that when some patients read medical notes about sensitive subjects, including substance abuse, they were more motivated to confront these challenges and address difficult changes in behavior.

Enhancing trust and the therapeutic relationship. Trusting therapeutic relationships are critically important for progress and recovery. Note sharing can demystify what the health professional writes (and thinks), helping patients to feel treated as complete individuals, rather than as a collection of symptoms. Open notes may promote richer dialogue between the patient and health professional and help the therapist initiate more frank discussions about potentially difficult topics, including the patient’s diagnosis, something routinely avoided by many therapists.

Making care safer. Allowing patients to review what was said about their symptoms, medication doses, etc. helps ensure that the record is accurate. Sharing notes also serves as a cross check, improving the likelihood that the patient and health professional are on the same page. Open notes promote partnership and cooperation among all parties to promote the safety of care.

“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.”

— a patient

Potential for reducing workload. Open notes can extend the work of the session between visits. As with all medical visits, many patients have a hard time remembering what was discussed in sessions. Note sharing may help patients find what is needed without requiring additional communication with their clinician, which may lead to fewer phone calls and emails between appointments, and shorter or more efficient note writing as clinicians shift to ‘plain language’ when appropriate.

Writing open therapy notes

Health professionals often worry about how to document sensitive issues, including substance use disorders, trauma, and a variety of psychiatric diagnoses. Inviting patients to read these notes presents new challenges. Here are some things to consider when writing open therapy notes.

The invitation is important. Whether patients choose to engage with the notes or not, the simple act of inviting them to read their notes helps establish a safe environment for discussion. And patients who do read the notes are often relieved to see what their therapist is writing. This type of transparency can lead to more mutual trust and enhance the therapeutic relationship.

Promote transparency. It’s natural to want to curb or avoid some challenging conversations with patients, but as part of an overarching strategy, transparency may encourage more open and active communication. Unless you believe a conversation might harm your patient, a good rule of thumb is to write about things you discussed and, conversely, to discuss with your patients content you will write about. 

Avoid or define medical jargon. Spell out acronyms and abbreviations. We’ve learned that patients don’t expect health professionals to change the way they write notes. Still, small changes can help make the note more useful for patients between sessions.

Use plain language. Open notes can reinforce trust when the notes are transparent and respectful, but they can diminish trust when notes are disrespectful or don’t accurately represent a session. Using ‘plain language’ helps. As an example, some patients have expressed concerns that the term ‘affect dysregulation’ might be a judgmental term. In this case, it’s an easy switch to simply use the word ‘upset.’ Still, it’s important to explain to patients that there are professional standards and health insurance requirements that need to be satisfied. Again, explaining and setting expectations is key. It is also a requirement for proper informed consent.

“When we think about our patients in a kind of language that we deem inappropriate or potentially offensive to the uninitiated, who is to say that our own attitudes toward our patients are not affected by that language? Wouldn’t we be closer to our patients’ experience if we got into the habit of thinking about them in language they would find meaningful and useful?”

— Kahn, et al, JAMA, 2014

Engage patients in the documentation. Let your patients know it’s okay to ask, “How are you going to document this?” This doesn’t mean the patient decides what can or cannot be written. It may be helpful to communicate that while the patient has a right to access to the record, the health professional must still satisfy professional requirements and standards.

Develop options if a patient’s access to notes may carry more risk than benefit. You may decide with the patient to keep the notes closed, or to monitor or sequester certain notes. You may discuss embargoing a note until a future date, or you might suggest reading the note together. Therapists may want to revisit these options at any point during treatment.

Protect against abuse. Health care professionals worry about patient safety issues, and this includes whether opening notes for some patients may run the risk of being more harmful than helpful. You should work closely with your patients to ensure safety. Patients who are victims of domestic violence, or are at risk for abuse, are especially vulnerable and warrant special consideration. For these patients, the same precautions are true for all other aspects of the medical record and should be applied to therapy notes, including sequestering or monitoring notes.

Discuss the diagnosis. We recommend that diagnoses and other important details be discussed with patients before documenting, so they aren’t learning something for the first time in the note.

Create a plan. We suggest having a discussion with your patients and together coming up with a plan for what they should do if they become worried or upset by reading their notes, or if they disagree with something in them. Setting realistic expectations is highly important, just as it is with any other aspect of a patient-health professional relationship.

Examples for writing mental health notes in challenging situations

Here are some examples of how to write mental health notes that are clinically meaningful and educational for you, your patient, and your patient’s care team. Written by a psychiatrist at BIDMC, these examples are based on scenarios encountered by health care professionals.

The delusional patient

Scenario: Mr. A is a man with schizophrenia who believes that the FBI has placed “invisible” microphones and cameras in his apartment. He takes 1 mg of risperidone daily “to keep my family off my back,” but you are trying to get him to take a higher dose. You have tried to discuss his diagnosis with him, but he dismisses it, and believes that “schizophrenia was made up by the FBI to incarcerate subversives.”

Sample note: Mr. A says he is taking risperidone 1 mg daily, but he continues to be convinced that the FBI is monitoring him. We disagree on this, as we do about whether he has a psychiatric problem in the first place. I believe that a higher dose of risperidone would help him with the anxiety he feels about being monitored, but he firmly refused to increase the dose to 2 mg daily. I nevertheless urged him to consider a brief trial of the higher dose, to see if he noticed any benefit. We will continue to assess his overall level of anxiety and how it affects his daily functioning. I am concerned that his anxiety limits his ability to feel safe on a day-to-day basis. But on a happier note, he continues to be very interested in current events and reads newspapers and books extensively.

The borderline patient

Scenario: Ms. B is a young woman who frequently self-mutilates to manage stress. She is taking fluoxetine and aripiprazole for anxiety and depression. They help to increase her stress tolerance to a certain extent, but she finds that ongoing use of alcohol and marijuana “help me more” with anxiety. Her relationship with her boyfriend continues to be marked by frequent verbal fights and occasional pushing. You are trying to explore other medication options and also to encourage her to try dialectical behavior therapy.

Sample note: Ms. B’s condition remains about the same as it was during our last visit. She feels the medication helps somewhat, but I have shared my concerns with her that her continued use of marijuana and alcohol likely interferes with the ability of the medication to help. She recognizes her frustration and unhappiness, however, and was open to discussing a referral for dialectical behavior therapy. I think this could be very helpful for her. I also raised the question of AA. We agreed to see how she felt after a week of going without alcohol, and if she can do this we will consider a low dose of lithium to help her with her moods. While she has her ups and downs at her job as a receptionist, she does feel her boss is supportive, and that’s encouraging.

The survivor of sexual trauma

Scenario: Ms. C is a woman in her thirties whom you have seen for a year for depression and who now reveals that she was molested by an uncle several times when she was 9. She has never revealed this to anyone before and was overwhelmed with feelings when she mentioned it. She asks you not to reveal this in the medical record.

Sample note: Ms. C is functioning well on citalopram 40 mg qd, sleeping and eating well, and doing well at work. Today she mentioned some incidents in her past that we have not discussed before and that were very significant for her. We will continue the citalopram and explore the incidents when we meet next.

The manipulative/dishonest patient

Scenario: Mr. D. is a man in his twenties whom you have been treating for anxiety. You get a call from a pharmacy saying he has been filling prescriptions for a benzodiazepine from a physician you have never heard of. You tactfully confront Mr. D with this information, and he gets very upset and leaves the visit prematurely, saying he can’t trust you anymore.

Sample note: Mr. D. said he has been doing well on fluoxetine 20 mg qd and clonazepam 1 mg bid for anxiety, and that he enjoys his new job as a mechanic. I told him I had been contacted by a pharmacy to ask me if I knew he was getting alprazolam from a different doctor, and I asked him if we could discuss the issue. Unfortunately, he became very upset and told me that the alprazolam was “none of your business.” I told him I thought perhaps his anxiety was under treated on the regimen I have been giving him, but he did not want to discuss it and left the office suddenly. He did not make a follow-up appointment, and I will send a letter inviting him to do so.

Media articles about open therapy notes

Sharing Clinical Notes With Patients Improves Treatment Effectiveness, OpenNotes.org

Patient access to electronic psychiatric records: A pilot study, ScienceDirect 

Boston hospital pilot gives patients electronic access to their therapists’ notes, Washington Post

What the therapist thinks about you, New York Times

Doctors’ notes on mental health shared with patients, Boston Globe

Would You Want to Read Your Therapist’s Notes?, Shape Magazine

Clinic lets patients read their therapist’s notes, BBC World Service

Should therapists give their patients access to mental health notes?, KPCC-FM 89.3 Southern California Public Radio

Beth Israel Opens Mental Health Notes To Some Patients,, WBUR-FM 90.9 Boston’s NPR News Station