Balancing Transparency and Stigma in Mental Health Care
Increasing patient access to clinical notes has the potential to improve patient education and shared decision-making between patients and clinicians. Researchers from the Brigham’s Department of Psychiatry are studying how to best use OpenNotes in a mental health care setting. In a review paper published in Lancet Psychiatry, Jennifer Harris, MD, and co-authors Nomi Levy-Carrick, MD, MPhil, and Ashwini Nadkarni, MD, detail the advantages and challenges of employing OpenNotes in the context of mental health care and areas of future inquiry. Harris told us more about this area of research:
Q: What is OpenNotes? How do clinicians and patients use this tool?
A: OpenNotes is an international movement to increase transparency in patient care by making all medical records accessible to patients. In April 2021, the 21st Century Cures Act mandated that patients in the United States be granted access to the entirety of their medical records. For clinicians, the medical record has traditionally served as documentation to track a patient’s progress and changes in the diagnosis and treatment plan and communicate that to other clinicians and for insurance billing. We recognize that OpenNotes presents an opportunity for clinicians to use the medical record as a means of patient education. Ideally, when patients read their medical notes it would improve patient understanding of their illness, help them follow the treatment plan, and give them more ownership over their medical care.
Q: What are some of the challenges of sharing clinical notes in the context of mental health care?
A: Mental health deals with sensitive topics such as trauma, abuse, addictions, self-harm, and suicidality, which may be difficult for patients to read and may cause patients anxiety as they see their private lives documented in the medical record. Mental health clinicians are also required to assess a patient’s judgment and causes for their behavior and give them a psychiatric diagnosis. Sometimes clinicians will give a diagnosis in the medical record that they have not discussed with the patient. Patients may not agree with this assessment and may be offended by what clinicians write — particularly when words are used with clinical, rather than colloquial, meaning. Unfortunately, the stigma against mental illness can make it hard to discuss mental health openly and constructively. Mental health terminology carries a lot of cultural baggage. For example, “bipolar,” “addiction,” and “psychotic” are clinical terms that are commonly used as pejoratives in popular culture.
Q: How do you balance transparency and stigma?
A: Some clinicians compensate by taking out detail and making their notes as general as possible. Decreasing detail can be wise, especially when it pertains to details of trauma that a patient has experienced. However, it is important for clinicians not to become so fearful of offending patients that they do not document important clinical information or diagnoses. Many patients suffer from self-stigma — that is, negative attitudes such as internalized shame about their mental illness. Stigma is not solved by the clinicians and patients avoiding the elephant in the room. Stigma is only solved when it is tackled head-on. Clinicians need to have difficult conversations with patients in the room, educate the patients, and address the implications these have for a patient’s self-perception.
Q: What guidelines do you suggest for improving clinician and patient engagement?
A: Clinicians typically focus on their roles in diagnosing patients and formulating treatment plans. OpenNotes highlights another opportunity — for clinicians to operate more prominently as patient educators and communicators. Several guidelines for this may be helpful. First, to decrease misunderstanding, clinicians should discuss their documentation with patients during visits, perhaps even writing notes together in the room. Second, clinicians might need retraining in their use of clinical language, as many conventions in clinical documentation, such as “patient complains” or “patient denies” can be offensive to patients and reflect underlying paternalism in medicine. Collaborating with the patient on how to document sensitive topics, such as trauma, violent behavior, or legal issues, can be helpful. Third, clinicians should let patients know at the outset that there may be questions or misunderstandings about their documentation and invite them to bring their concerns to a visit. Collaborating with and educating patients takes additional time and energy during sessions, and, therefore, systems will need to take this into account and recognize their role in positioning clinicians successfully.
Q: What do you hope to see change or improve in the future?
A: Ultimately, OpenNotes represents the long-term trend in medicine away from paternalism and towards patient-clinician collaboration. But this is only the first step. If patients are going to be given the opportunity to listen to the clinical dialogue about them in the medical record, they also need to be given a voice in this dialogue. We need to find productive ways to incorporate a patient’s contribution to their medical record — whether that means being able to provide a narrative of their medical history, contributing logs of their medication adherence or vitals, or serial self-report questionnaires. There are ways to make the medical record a much more effective tool for patient care. However, a crucial piece of implementing OpenNotes effectively when it comes to mental health is to address mental illness stigma. Stigma prevents patients and clinicians from communicating openly and honestly, and we need to help patients, clinicians, and the community to see the common humanity of those struggling with mental illness. Rather than provoking stigma, we want to work together toward a world where discussion and documentation about mental illness elicits compassion — and ultimately optimal care and treatment.