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How have clinicians in general and psychiatrists in particular reacted to the open notes mandate?
Dr Torous: For many US clinicians, this new rule has felt like a “shock.”7 In particular, sharing access to mental health notes has been “controversial,”10 and many psychiatric organizations have resisted implementing this practice.8 Mental health clinicians have expressed concern that patients might become anxious, confused, or upset about what they read in their notes.10 Some small pilot studies investigating patients’ experiences in specialized mental health settings reported some encouraging results, but some of the patients reported feeling disrespected or judged by what they read in their records.10
Our group conducted a survey10 of 92 experts in mental health from 6 countries regarding potential benefits and harms of open notes in mental health. We found that, on the whole, members of our expert panel felt that open notes could aid patient recall about what was discussed during the visit, that access to notes could have a positive impact on the patient-clinician relationship by improving trust, enhancing the therapeutic alliance, helping to align goals, and strengthening shared decision-making. Access to notes might even reduce patients’ anxiety about what their clinicians might be writing about them, our panelists felt.
Our panelists felt that open notes would be not harmful to patients with serious mental health diagnoses such as bipolar disorders, major depressive disorders, eating disorders, obsessive conditions, and suicidality and that access to notes could help patients correct errors, such as clinician misinterpretations. They agreed that mental health or psychotherapy notes could actually do harm by leading to a greater sense of stigmatization.
We asked panelists about whether they felt their professional autonomy might be curtailed by having patients access their notes, and they “somewhat agreed” with the concern that mental health clinicians might end up taking less detailed or accurate documentation of negative aspects of the patient relationship details about their patients’ personalities, or symptoms or paranoia. Nevertheless, on the whole, they predicted that patient access to mental health notes could increase efficiency in health care delivery.10
Has any research investigated how the open notes mandate is actually affecting patient care?
Dr Torous: Some research has suggested that increased transparency has augmented patients’ understanding of their medications and has augmented engagement with their care.11 Our group analyzed data from a 2017 web-based survey of patient experiences with access to outpatient visit notes.12, 13 Of over 19,000 respondents, 7% had a diagnosis of serious mental illness (SMI) and 9% had a diagnosis of another mental illness.
Of those patients with SMI, 20% reported that reading their notes made them more likely to take their medications, compared with 14% of patients without a mental health diagnosis. And among patients with an SMI diagnosis, 67% reported that reading notes helped them to understand why their medications had been prescribed, 65% felt more comfortable with their medications, and 60% felt that their notes helped answer their medication questions.
Only a small percentage of patients with mental illness (2% with SMI and 3% with other mental illnesses) reported that reading their notes made them more confused, which many clinicians have expressed as a concern regarding giving patients access to their notes. However, patients with SMI or other mental health diagnoses were more likely to report feeling worried after reading their notes, compared to patients without mental health diagnoses.13
It is worth pointing out that notes have been available to patients with mental illness in the VA for years and I have not heard of any adverse outcomes. But overall, there hasn’t been much data being collected, so ultimately, it is hard to judge the impact. I think that this is a subject ripe for further research to truly understand the impact that open notes is having on patients and on clinicians and to fine-tune the process so as to use it to its best advantage.
How should patient notes be written?
Dr Torous: For starters, there should be no surprises for patients. Anything that the patient sees in the notes should have been discussed with the patient at the visit, so the notes can reinforce that discussion. If concerns come up, for example, the patient can see, “Oh, we already talked about those early warning signs of relapse.”
Psychiatric notes, like all other medical notes, should be written in plain, comprehensible English, as free of jargon as possible. Obviously, there are medical terms that need to be used and incorporated into a chart, but when possible, consider a term that is more comprehensible or might be less “charged.” For example, the term “affect dysregulation” might be seen as judgmental, and the patient’s record will not lack clarity if you use the word “upset” or “distress” or “shifting mood” instead. It is important to let patients know that there are professional standards and health insurance requirements that necessitate the use of professional terminology. And encourage patients to ask you what a word means if they don’t understand it.
Avoid editorializing. Keep focused on the facts and don’t be afraid of documenting even challenging conversations with patients. This contributes to transparency and trust and paves the way to further enhanced communication — unless, in your clinical judgment, you feel that this might harm your patient, as mentioned earlier.
If you feel that the patient’s access to his or her notes may be harmful, there are several strategies you can adopt, depending on the situation. One is to decide together with the patient to keep the notes closed or monitor or sequester certain notes or read the notes together. The subject can be an open discussion and revisited at any point during treatment.
Create a plan with your patient for what they should do if they are distressed by something they read in their notes, or if they disagree with something you have written. Keeping communication open and inviting patients to honestly share their concerns will enhance the clinician-patient relationship.
Where can psychiatrists and other mental health clinicians obtain further guidance about open notes?
Dr Torous: The best resource I know is OpenNotes, housed at Beth Israel Deaconess Medical Center and Harvard Medical School. OpenNotes is an international movement that has been studying the effects of transparent communication among patients, families, and clinicians for years. I was part of the team that ran a pilot of OpenNotes in our psychiatry department and am a clinical collaborator with OpenNotes today. There is a section on the OpenNotes website that offers specific guidance to mental health professionals.
References
1. 21st Century Cures Act: interoperability, information blocking, and the ONC Health IT certification program. US Department of Health and Human Services. Published May 1, 2020. Accessed February 22, 2022. https://www.govinfo.gov/content/pkg/FR-2020-05-01/pdf/2020-07419.pdf.
2. Lengyel-Gomez B. 21st Century Cures Act — a summary. 2017. Updated November 20, 2018. Assessed February 22, 2022. https://www.himss.org/resources/21st-century-cures-act-summary
3. Blease C, Cohen IG, Hoffman S. Sharing clinical notes: potential medical-legal benefits and risks. JAMA. 2022;327(8):717-718. doi:10.1001/jama.2021.23179
4. Your Rights Under HIPAA. US Department of Health and Human Services. Updated January 19, 2022. Accessed February 15, 2022. https://www.hhs.gov/hipaa/for-individuals/guidance-materials-for-consumers/index.html.
5. Lye CT, Forman HP, Gao R, et al. Assessment of US hospital compliance with regulations for patients’ requests for medical records. JAMA Netw Open. 2018 Oct 5;1(6):e183014. doi:10.1001/jamanetworkopen.2018.3014
6. OpenNotes. US Department of Veteran Affairs. Accessed February 22, 2022. https://www.opennotes.org/institution/u-s-department-of-veterans-affairs-va/
7. Salmi L, Blease C, Hägglund M, Walker J, DesRoches CM. US policy requires immediate release of records to patients. BMJ. 2021 Feb 18;372:n426. doi:10.1136/bmj.n426
8. Blease CR, O’Neill S, Walker J, Hägglund M, Torous J. Sharing notes with mental health patients: balancing risks with respect. Lancet Psychiatry. 2020 Nov;7(11):924-925. doi:/10.1016/ S2215-0366(20)30032-8
9. Grote-Westrick M. New German digital project paves the way for online access to personal electronic health records. The BMJ Opinion. February 18, 2021.
10. Blease C, Kharko A, Hägglund M, et al. The benefits and harms of open notes in mental health: a Delphi survey of international experts. PLoS One. 2021 Oct 13;16(10):e0258056. doi:10.1371/journal.pone.0258056
11. Blease C, DesRoches CM. Open notes in patient care: confining deceptive placebos to the past? J Med Ethics. 2021 Oct 26:medethics-2021-107746. doi:10.1136/medethics-2021-107746
12. Walker J, Leveille S, Bell S, et al. OpenNotes after 7 years: patient experiences with ongoing access to their clinicians’ outpatient visit notes. J Med Internet Res. 2019;21(5):e13876. doi:10.2196/13876
13. Blease C, Dong Z, Torous J, Walker J, Hägglund M, DesRoches CM. Association of patients reading clinical notes with perception of medication adherence among persons with serious mental illness. JAMA Netw Open. 2021 Mar 1;4(3):e212823. doi:10.1001/jamanetworkopen.2021.2823
