The benefits and harms of open notes in mental health: A Delphi survey of international experts

Abstract

Importance As of April 5, 2021, as part of the 21st Century Cures Act, new federal rules in the U.S. mandate that providers offer patients access to their online clinical records. Objective To solicit the view of an international panel of experts on the effects on mental health patients, including possible benefits and harms, of accessing their clinical notes. Design An online 3-round Delphi poll. Setting Online. Participants International experts identified as clinicians, chief medical information officers, patient advocates, and informaticians with extensive experience and/or research knowledge about patient access to mental health notes. Main outcomes, and measures An expert-generated consensus on the benefits and risks of sharing mental health notes with patients. Results A total of 70 of 92 (76%) experts from 6 countries responded to Round 1. A qualitative review of responses yielded 88 distinct items: 42 potential benefits, and 48 potential harms. A total of 56 of 70 (80%) experts responded to Round 2, and 52 of 56 (93%) responded to Round 3. Consensus was reached on 65 of 88 (74%) of survey items. There was consensus that offering online access to mental health notes could enhance patients’ understanding about their diagnosis, care plan, and rationale for treatments, and that access could enhance patient recall and sense of empowerment. Experts also agreed that blocking mental health notes could lead to greater harms including increased feelings of stigmatization. However, panelists predicted there could be an increase in patients demanding changes to their clinical notes, and that mental health clinicians would be less detailed/accurate in documentation. Conclusions and relevance This iterative process of survey responses and ratings yielded consensus that there would be multiple benefits and few harms to patients from accessing their mental health notes. Questions remain about the impact of open notes on professional autonomy, and further empirical work into this practice innovation is warranted.

Adapting to transparent medical records: international experience with “open notes”

“…Drawing on earlier published recommendations, recent research, and patient and clinician experiences with open notes, we offer 10 suggestions to help GPs, the wider primary care team, and patients prepare for this change of practice 41355565758596061626364. Reviewed and informed by a panel of six patients (see “How patients were involved in the creation of this article”), these recommendations are designed to help physicians optimise the potential benefits of open notes and minimise their risks (see also box 1, a guide for patients, and box 2, what patients find helpful).…”

Shifting Mindsets: The Impact of a Patient Portal on Functioning and Recovery in a Mental Health Setting

“…To our knowledge, this is one of the first studies outlining concrete evidence of the impact a patient portal implemented in a Canadian mental health hospital has on the functioning and recovery of patients suffering from mental health challenges. Contrary to the concerns outlined in numerous articles, 12,16,19,[21][22][23] this work has provided the foundation for us to reconsider the potential concerns around portals in mental health settings and think about how we can best position the delivery of patient portals to enhance mental health clinical care outcomes. 46 There has been significant interest in the impact of a patient portal on mental health functioning.…”

“…In particular, there are perceptions among healthcare professionals that information sharing may ruin therapy and negatively impact recovery. 12,16,19,[21][22][23] While Canada does not have a national policy such as the "Cures Act" in the United States to proactively share clinical notes with patients, the clinician concerns noted above may further impact the adoption of patient portals. [23][24][25] Despite ongoing efforts to evaluate the impact of patient portals on mental health care, the current literature lacks evidence on whether the patient portal is detrimental to therapy and/or has a negative impact on mental healthcare.…”

“…12,16,19,[21][22][23] While Canada does not have a national policy such as the "Cures Act" in the United States to proactively share clinical notes with patients, the clinician concerns noted above may further impact the adoption of patient portals. [23][24][25] Despite ongoing efforts to evaluate the impact of patient portals on mental health care, the current literature lacks evidence on whether the patient portal is detrimental to therapy and/or has a negative impact on mental healthcare. 17 More importantly, little is known about the impact of the portal on patients' mental health recovery.…”

Patient Online Record Access in English Primary Care: Qualitative Survey Study of General Practitioners’ Views

“…Responses were analyzed by 2 members of the research team (CB and JT). CB is a philosopher of medicine and health care ethicist from the United Kingdom, and JT is an informatician and psychiatrist from the United States with experience in sharing online access to patients' health records [45,46]. The comment transcripts were initially read numerous times to achieve familiarization with the participant responses.…”