Association of Patients Reading Clinical Notes With Perception of Medication Adherence Among Persons With Serious Mental Illness

Blease, Charlotte; Dong, Zhiyong; Torous, John; Walker, Jan; Hägglund, Maria; DesRoches, Catherine M.

doi:10.1001/jamanetworkopen.2021.2823

Cited by 38 publications

(53 citation statements)

References 3 publications

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“…66 A recent survey analysis found that persons with serious mental illnesses-defined as including major depression, bipolar disorders and schizophrenia disorders-were significantly more likely than other patients to report feeling in control of their medications, to understand adverse effects, and to report taking their medications, after accessing their notes. 67 Even while acknowledging that there may be occasions when some patients with mental illnesses may be upset, or confused by what they read, or that some patients may even be harmed by access, 25 26 this growing body of research indicates that the majority of mental health patients derive benefits from reading their clinical notes. When health organisations deny mental health patients access to resources-namely, their clinical notes-this constitutes a form of hermeneutic injustice since it may impede patients' capacity to understand their clinical condition and treatment plan, and potentially to improve their health outcome.…”

Section: Extended Essaymentioning

confidence: 99%

Patients, clinicians and open notes: information blocking as a case of epistemic injustice

et al. 2021

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In many countries, including patients are legally entitled to request copies of their clinical notes. However, this process remains time-consuming and burdensome, and it remains unclear how much of the medical record must be made available. Online access to notes offers a way to overcome these challenges and in around 10 countries worldwide, via secure web-based portals, many patients are now able to read at least some of the narrative reports written by clinicians (‘open notes’). However, even in countries that have implemented the practice many clinicians have resisted the idea remaining doubtful of the value of opening notes, and anticipating patients will be confused or anxious by what they read. Against this scepticism, a growing body of qualitative and quantitative research reveals that patients derive multiple benefits from reading their notes. We address the contrasting perceptions of this practice innovation, and claim that the divergent views of patients and clinicians can be explained as a case of epistemic injustice. Using a range of evidence, we argue that patients are vulnerable to (oftentimes, non-intentional) epistemic injustice. Nonetheless, we conclude that the marginalisation of patients’ access to their health information exemplifies a form of epistemic exclusion, one with practical and ethical consequences including for patient safety.

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Section: Extended Essaymentioning

confidence: 99%

Patients, clinicians and open notes: information blocking as a case of epistemic injustice

et al. 2021

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“…In surveys, mental health clinicians worry that patients will become anxious, confused or upset by what they read; many also anticipate access will lead to increased work burdens [ 4 – 6 ]. Findings drawn predominantly from primary care suggest that mental health patients may derive benefits from accessing their clinical notes including feeling more in control of their care, better remembering their care plan, and better understanding the rationale for medications [ 7 , 8 ]. However, sharing mental health notes could present more challenges than in other clinical specialties.…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2021

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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.

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“…[4][5][6] Findings drawn predominantly from primary care suggest that mental health patients may derive benefits from accessing their clinical notes including feeling more in control of their care, better remembering their care plan, and better understanding the rationale for medications. [7,8] However, sharing mental health notes could present more challenges than in other clinical specialties. Currently, only a few pilot surveys have examined patients' experiences in specialized mental health settings, and while the results are encouraging, at least some patients reported feeling disrespected or judged by what they read.…”

Section: Introductionmentioning

confidence: 99%

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

Blease

Kharko

Hägglund³

et al. 2021

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ImportanceAs 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.

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Association of Patients Reading Clinical Notes With Perception of Medication Adherence Among Persons With Serious Mental Illness

Abstract: This survey study examines how patients with a mental illness diagnosis who read at least 1 clinical note in the last year perceived its association with their medication adherence.

Cited by 38 publications

References 3 publications

Patients, clinicians and open notes: information blocking as a case of epistemic injustice

Patients, clinicians and open notes: information blocking as a case of epistemic injustice

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

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

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