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

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Blease, CharlotteGeneral Medicine and Primary Care, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA (author)

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

Article/chapterEnglish2022

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2021-05-14
BMJ Publishing Group Ltd,2022
electronicrdacarrier

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LIBRIS-ID:oai:DiVA.org:his-19709
https://urn.kb.se/resolve?urn=urn:nbn:se:his:diva-19709URI
https://doi.org/10.1136/medethics-2021-107275DOI
https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-442417URI
http://kipublications.ki.se/Default.aspx?queryparsed=id:148296694URI

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Language:English
Summary in:English

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SwePubSwePub

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Subject category:ref swepub-contenttype
Subject category:art swepub-publicationtype

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CC BY 4.0Correspondence to Dr Charlotte Blease, General Medicine and Primary Care, Beth Israel Deaconess Medical Center, Boston, MA 02215, USA; cblease@bidmc.harvard.eduThis 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’).
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.

Subject headings and genre

HUMANIORA Filosofi, etik och religion Etik hsv//swe
HUMANITIES Philosophy, Ethics and Religion Ethics hsv//eng
NATURVETENSKAP Data- och informationsvetenskap Systemvetenskap, informationssystem och informatik hsv//swe
NATURAL SCIENCES Computer and Information Sciences Information Systems hsv//eng
HUMANIORA Filosofi, etik och religion Filosofi hsv//swe
HUMANITIES Philosophy, Ethics and Religion Philosophy hsv//eng
MEDICIN OCH HÄLSOVETENSKAP Annan medicin och hälsovetenskap Övrig annan medicin och hälsovetenskap hsv//swe
MEDICAL AND HEALTH SCIENCES Other Medical and Health Sciences Other Medical and Health Sciences not elsewhere specified hsv//eng
open notes
patients
EHR
Information Systems
Informationssystem (IS)
INF301 Data Science
INF301 Data Science

Added entries (persons, corporate bodies, meetings, titles ...)

Salmi, LizGeneral Medicine and Primary Care, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA (author)
Rexhepi, Hanife,1984-Högskolan i Skövde,Institutionen för informationsteknologi,Forskningsmiljön Informationsteknologi,Informationssystem (IS), Information Systems(Swepub:his)krah (author)
Hägglund, Maria,Lektor,1975-Karolinska Institutet,Uppsala universitet,Institutionen för kvinnors och barns hälsa,Department of Women's and Children's Studies, Uppsala Universitet, Sweden(Swepub:uu)mha05791 (author)
DesRoches, Catherine M.General Medicine and Primary Care, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA ; Harvard Medical School, Boston, Massachusetts, USA (author)
General Medicine and Primary Care, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USAInstitutionen för informationsteknologi (creator_code:org_t)

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In:Journal of Medical Ethics: BMJ Publishing Group Ltd48:10, s. 785-7930306-68001473-4257

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