Mental Health Toolkit
Why Open Notes in Mental Health Therapy?
Each year, 1 in 5 adults in the United States — nearly 44 million people — experiences mental or behavioral illness. That’s double the number of adults with diabetes and about half the number of Americans living with heart disease. A growing body of research suggests that, like these other conditions, the earlier an individual receives care, the better the results, still, the average person waits nearly 10 years before seeking treatment. Why is that?
The main reason people don’t seek treatment is that they don’t think they need it. They may not realize how much mental illness is affecting their day to day life and other aspects of their health, they believe they can handle it on their own, or they’re worried about what others with think of them.
OpenNotes helps break down the barriers to care and reduce the stigma and isolation of mental illness so that more patients feel empowered to get the care they need when they need it. Research shows that open communication helps patients understand their conditions better and feel more in control of their health and healthcare decisions.
What Are Notes?
After you have a visit with your therapist or other behavioral or mental health provider, essential information from the visit is summarized in notes that become part of your medical record.
In 1996, the Health Insurance Portability and Accountability Act (HIPAA) gave patients the legal right to receive and review the contents of their medical records, and that includes the therapy notes written by psychiatrists, psychologists, social workers, and others. However, HIPPA doesn’t guarantee easy access to one’s medical record. In fact, the process of requesting records can be tedious, time consuming, and sometimes expensive.
When therapists readily share visit notes with patients, online using secure patient portals, or on paper, the practice is called OpenNotes. As this practice of sharing notes with patients has spread to many health systems across the United States, efforts are underway to ensure that therapy notes receive the same considerations as all other types of notes.
In 2014, researchers and mental health providers at Beth Israel Deaconess Medical Center (BIDMC) wrote an article outlining why they believe that open notes can be a valuable part of therapy for many patients managing mental/behavioral health and illness:
“By writing notes useful to both patients and ourselves and then inviting them to read what we write, we may help patients address their mental health issues more actively and reduce the stigma they experience.”
— Kahn, et al, JAMA, 2014
Health Systems That Share Therapy Notes with Patients
- Allina Health
- Banner Health
- Beth Israel Deaconess Medical Center
- Cambridge Health Alliance
- Essentia Health
- Kaiser Permanente Northwest
- Ontario Shores Centre for Mental Health Sciences (Canada)
- Rush Medical Center
- The Vancouver Clinic
- UCHealth (University of Colorado)
- University Health Network (Canada)
- University of Iowa Health Care
- University of Vermont Medical Center
- U.S. Department of Veterans Affairs
- UW Medicine (University of Washington)
- Virginia Mason
What Is Contained in Mental Health Notes?
The content of mental health notes can vary depending on your clinician and the type of care you receive. Like other note types, mental health notes frequently include a diagnosis, a summary of what you shared with your clinician, medication updates, your clinician’s assessment of your health, a treatment plan or next steps, and other information from your appointment. The notes may also include information to satisfy professional and health insurance requirements.
It’s Okay to Ask! If you’re interested in gaining access to your therapy notes, it’s a good idea to start by talking with your clinician, who may be able to print out your notes for you and support your wishes to read your notes online using the secure, patient portal. We also provide a template if it’s more convenient or you feel more comfortable sending a request by email. And you can visit the OpenNotes map to see the full list of the health systems that share notes with patients.
What Are the Benefits of Reading Mental Health Notes?
Become more Involved and Feel more in Control of Your Health Care. After a visit, you can read your notes to review what you discussed with your clinician, your treatment plan, any changes to your medications, and to remind you of any follow-up you may need. In between visits you can read your note to make sure you are following the treatment plan and to make sure you follow up on the procedures, tests or appointments that were recommended. In preparation for your next visit, you can read your note to remind yourself of what you discussed with your health care provider at your last appointment. You might also think about any steps you have taken since your last visit and any changes or new problems you may be experiencing since your last visit. The notes can help you prepare a list of questions to review with your therapist at the appointment.
Feel Empowered. It can take some time to get used to how mental health notes are written, but recognizing your own capabilities in being able to read your notes, discuss them with your therapist, and use them constructively can be empowering, building trust in yourself and between you and your clinician. Reading your notes may even improve your self-awareness and self-confidence. If you have worries or concerns, it may be helpful to read through the first note or two with your clinician so you know what to expect.
“I read my notes because it helps me see the progress I’ve made and the successes I’ve already had. Being in mental health care is hard work. It’s a lot of effort for me to come here and it can be draining at times. When I look back at my notes from last year, I get to view how far I’ve come.”– Larry, Veteran
Organize Care and Track Progress. Just as in any other appointment, there’s a lot to remember. Going back to read the notes after the appointment may help you manage your illness more effectively. Reading notes can help you better understand your condition and treatment and your progress between visits. It can remind you of your responsibilities in your own care, including ‘homework’ or follow-up issues to be worked on between sessions.
Use Your Notes as a Tool for Change. You may find that being able to have a discussion with your clinician about the information in your therapy notes may help to decrease the stress you might otherwise hold alone. In addition, you might find that the notes help you to benchmark your progress and serve as motivation to help you confront challenges and address difficult changes with which you struggle.
“I have a tough time recognizing that I’ve made progress. So it’s nice to read this as a reminder.”— patient, David , New York Times
Enhance Trust and the Therapeutic Relationship. A trusting, therapeutic relationships between a patient and their therapist is critically important to progress and recovery. Being able to read what your therapist writes can help demystify what he or she is thinking, which for most patients, can lead to a stronger relationship and richer conversations. It can also help you and your therapist initiate more open discussions about potentially difficult topics.
Help Make Your Care Safer. When you review your health record, including your medical history, current symptoms, medication dosages, and the care plan, you can help ensure that your record is accurate, and when your medical record is up to date and accurate, your care is safer.
Make Sure You’re on the Same Page
Sharing notes serves as a cross check, improving the likelihood that you and your therapist have a mutual understanding of what was discussed. The notes may also include comments from your therapist about differences in perceptions and understanding. Including work to understand these differences is an important part of any therapy work.
“Confident in the communication between my therapist and myself, eager to tell more.”– a patient
Share with a Family Member or Other Clinician
Interactions between you and your clinician, and the notes documenting those interactions are confidential. However, you may share your note with anyone you choose. Indeed, you may find it extremely helpful to share your notes with family members, friends, or caregivers who assist in your health care. Sharing notes with trusted friends, family, or caregivers, or other clinicians involved in your care may help keep people up to date with any changes in your medications, health conditions, or care plan. It may also help caregivers or care partners to coordinate your care. Remember that your personal health information is private, and only you should choose with whom to share it.
Are There Any Downsides or Risks to Reading my Mental Health Notes?
Everyone’s experience is different. As you read your mental health notes, keep in mind that they vary in length, may include sensitive information, could have unfamiliar terms or confusing language required to meet professional standards, , or could even surprise you. It’s normal to have questions or concerns and this is all something which can, and should, be discussed with your therapist. It’s also true that some patients may simply feel that reading their open notes may not feel right to them, for whatever reason, and that’s okay too. You know yourself best. It’s important to respect that, and to talk with your therapist about your wishes.
Talking about the things that effect our lives, especially topics that can be difficult to discuss, can be important for recovery in mental health. Here are some strategies that can help you get started with using open notes as a tool in your therapy:
Talk with your therapist about your expectations with note sharing. This conversation can also help you learn more about your treatment and your clinician’s perspectives. Things you might want to discuss include:
- Unfamiliar professional terms, abbreviations, or language
- Reading sensitive information
- Mistakes, errors, or missing information
- Too much or too little detail
- Differences of opinion about diagnoses or treatment
- Reading surprising, confusing, or upsetting information
If you’re nervous or worried, you may want to consider asking your clinician if you can read some of your notes together.
Develop a plan for what you should do if you become worried or upset by reading your notes, or if you disagree with something written in the notes. This may include talking with a trusted friend or family member, taking a walk, or relying on other strategies that work for you.
“The most important thing is to talk with your therapist about all the typical ways you manage your well-being between visits and how those same strategies can be used while reading your notes.”— Steve O’Neill, LICSW, JD, OpenNotes Specialist, Social Work Manager for Psychiatry and Primary Care, BIDMC
Is There Anything Else to Keep in Mind?
Questions are Good. You can ask your therapist, “How are you going to write about this in my note?” But, it’s important to remember that while the patient has a right to access to the record, the health professional must still satisfy professional requirements and standards.
Sometimes Notes Are Closed. If your therapist feels that reading the information in a note might be harmful to you, the therapist may keep the note from being available on the patient portal. If a note is unavailable, talk with your therapist. Again, you might suggest reading the note together.
Open Notes Are Not for Everyone. For some patients, just knowing the notes are there and available is enough. Some use the notes as reminders of the work to do between visits, and other choose not to read their notes for a variety of reasons, and that’s okay too.