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

作者信息

Blease Charlotte, Salmi Liz, Rexhepi Hanife, Hägglund Maria, DesRoches Catherine M

机构信息

General Medicine and Primary Care, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA

General Medicine and Primary Care, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA.

出版信息

J Med Ethics. 2021 May 14;48(10):785-93. doi: 10.1136/medethics-2021-107275.


DOI:10.1136/medethics-2021-107275
PMID:33990427
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9554023/
Abstract

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.

摘要

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本文引用的文献

[1]
Association of Patients Reading Clinical Notes With Perception of Medication Adherence Among Persons With Serious Mental Illness.

JAMA Netw Open. 2021-3-1

[2]
Words Matter: What Do Patients Find Judgmental or Offensive in Outpatient Notes?

J Gen Intern Med. 2021-9

[3]
Sharing Clinical Notes in Psychotherapy: A New Tool to Strengthen Patient Autonomy.

Front Psychiatry. 2020-10-28

[4]
New U.S. Law Mandates Access to Clinical Notes: Implications for Patients and Clinicians.

Ann Intern Med. 2021-1

[5]
Open Notes in Oncology: Patient versus Oncology Clinician Views.

Cancer Cell. 2020-12-14

[6]
Patient researchers - the missing link?

Nat Med. 2020-10

[7]
Six countries, six individuals: resourceful patients navigating medical records in Australia, Canada, Chile, Japan, Sweden and the USA.

BMJ Open. 2020-9-15

[8]
Online electronic healthcare records: Comparing the views of cancer patients and others.

Health Informatics J. 2020-12

[9]
Open notes in cancer care: coming soon to patients.

Lancet Oncol. 2020-9

[10]
Identifying indicators of meaningful patient portal use by psychiatric populations.

Inform Health Soc Care. 2020-10-1

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