The Benefits and Harms of Open Notes in Mental Health: A Delphi Survey of International Experts

Abstract

AbstractImportanceAs 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.ObjectiveTo 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.DesignAn online 3-round Delphi poll.SettingIn round 1 open-ended questions solicited feedback on the benefits and harms to patients of reading their mental health notes. Responses were coded to produce itemized statements. In Round 2 participants were asked to rate their agreement with each item along 7-point Likert scales. Responses were analyzed for consensus, set at a predetermined interquartile range of ≤ 1. In Round 3 items that did not reach consensus were redistributed.ParticipantsInternational 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 MeasuresAn expert-generated consensus on the benefits and risks of sharing mental health notes with patients.ResultsA total of 70 of 92 (76%) experts from 6 countries responded to Round 1. A qualitative review of responses yielded 88 distinct items. 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.Conclusions and RelevanceThis 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.