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Patients, clinicians and open notes: information blocking as a case of epistemic injustice
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.
University of Skövde, School of Informatics. University of Skövde, Informatics Research Environment. (Informationssystem (IS), Information Systems)ORCID iD: 0000-0001-8957-9853
Department of Women's and Children's Studies, Uppsala Universitet, Sweden.
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2022 (English)In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 48, no 10, p. 785-793Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
BMJ Publishing Group Ltd, 2022. Vol. 48, no 10, p. 785-793
Keywords [en]
open notes, patients, EHR
National Category
Ethics Information Systems Philosophy
Research subject
Information Systems; INF301 Data Science
Identifiers
URN: urn:nbn:se:his:diva-19709DOI: 10.1136/medethics-2021-107275ISI: 000728740600001PubMedID: 33990427Scopus ID: 2-s2.0-85106192401OAI: oai:DiVA.org:his-19709DiVA, id: diva2:1557694
Funder
Forte, Swedish Research Council for Health, Working Life and WelfareNordForsk
Note

CC BY 4.0

Correspondence to Dr Charlotte Blease, General Medicine and Primary Care, Beth Israel Deaconess Medical Center, Boston, MA 02215, USA; cblease@bidmc.harvard.edu

This work was supported by a John Keane Scholar Award, the Cambia Health Foundation, the Gordon and Betty Moore Foundation, Forte (the Swedish research council for health, working life and welfare) (’Beyond Implementation’), and NordForsk (’NORDeHEALTH’).

Available from: 2021-05-26 Created: 2021-05-26 Last updated: 2022-10-18Bibliographically approved

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Rexhepi, Hanife

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