Patient Access to Mental Health Notes: Motivating Evidence-Informed Ethical Guidelines.

ABSTRACT: In the last decade, many health organizations have embarked on a revolution in clinical communication. Using electronic devices, patients can now gain rapid access to their online clinical records. Legally, patients in many countries already have the right to obtain copies of their health records; however, the practice known as "open notes" is different. Via secure online health portals, patients are now able to access their test results, lists of medications, and the very words that clinicians write about them. Open notes are growing with most patients in the Nordic countries already offered access to their full electronic record. From April 2021, a new federal ruling in the United States mandates-with few exemptions-that providers offer patients access to their online notes (Office of the National Coordinator for Health Information Technology, Department of Health and Human Services, Available at: https://www.govinfo.gov/content/pkg/FR-2019-03-04/pdf/2019-02224.pdf#page=99). Against these policy changes, only limited attention has been paid to the ethical question about whether patients with mental health conditions should access their notes, as mentioned in the articles by Strudwick, Yeung, and Gratzer (Front Psychiatry 10:917, 2019) and Blease, O'Neill, Walker, Hägglund, and Torous (Lancet Psychiatry 7:924-925, 2020). In this article, our goal is to motivate further inquiry into opening mental health notes to patients, particularly among persons with serious mental illness and those accessing psychological treatments. Using biomedical ethical principles to frame our discussion, we identify key empirical questions that must be pursued to inform ethical practice guidelines.

Perceptions of Primary Care Notes by Patients With Mental Health Diagnoses.

There are concerns regarding whether patients with mental illness should be provided with access to their electronic medical records. This study compared perceptions of patients with (n = 400) and without (n = 2,134) a mental health diagnosis regarding access to primary care clinic notes through secure online portals. Eligible participants viewed at least 1 clinic note during a 12-month period. Administrative data were used to stratify patients by mental health diagnosis. As we hypothesized, patients with and without mental health diagnoses had similar perceptions about online access to notes.

The Ethics Liaison Program: building a moral community.

Ethicists often struggle to maintain institution-wide awareness of and commitment to medical ethics. At Beth Israel Deaconess Medical Center (BIDMC), we created the Ethics Liaison Program to address that challenge by making ethics part of the moral culture of the institution. Liaisons represent clinical and non-clinical areas throughout the medical centre. The liaison has a four-part role: to spread awareness and understanding of Ethics Programs among their coworkers; share information regarding ethical dilemmas in their work area with the members of the Ethics Support Service; review ethics activities and needs within their area; and undertake ethics-related projects. This paper lists the notable attributes of the Ethics Liaison Program, and describes the purpose and structure of the programme, its advantages and the challenges to implementing it. The Ethics Liaison Program has helped to make ethics part of the everyday culture at BIDMC, and other medical centres might benefit from the establishment of similar programmes.