ArticleJournal of medical ethics2022
Patients, clinicians and open notes: information blocking as a case of epistemic injustice.
Article in Journal of medical ethics, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 40 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
40 citing papers in PubMed.
- Beyond Transparency : Ethical Note Obligations, Documentation Burden, and the Ethical Adoption of AI-Assisted Documentation.Journal of bioethical inquiry · 2026Article
- Toward Family-Centered Patient Portals for Childhood Asthma Management Among Black Primary Caregivers: Qualitative Interview Study.JMIR pediatrics and parenting · 2026Article
- Patient and Family Perspectives on Generative AI Tools in Rare Diseases: Exploratory Mixed Methods Online Survey.Journal of participatory medicine · 2026Article
- Epistemic injustice, healthcare disparities and the missing pipeline: reflections on the exclusion of disabled scholars from health research.Journal of medical ethics · 2026Article
- Identifying Bias at Scale in Clinical Notes Using Large Language Models.Mayo Clinic proceedings. Digital health · 2025Article
- Empowering patients through clinical notes access: Opportunities, challenges, and the path forward.PLOS digital health · 2025Article
- Factors Associated With Portal and Telehealth Uptake and Use in a Minoritized, Low-Income Community: Mixed Methods Study.JMIR formative research · 2025Article
- Article
- Charting Diagnostic Safety: Exploring Patient-Provider Discordance in Medical Record Documentation.Journal of general internal medicine · 2025Article
- Adolescent and parental proxy online record access: analysis of the empirical evidence based on four bioethical principles.BMC medical ethics · 2025Article
- Impact of Patient Online Record Access on Documentation: Scoping Review.Journal of medical Internet research · 2025Article
- Article
- Patient-Accessible Electronic Health Records and Information Practices in Mental Health Care Contexts: Scoping Review.Journal of medical Internet research · 2025Article
- TheCMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne · 2024Article
- Exploring Patient, Proxy, and Clinician Perspectives on the Value and Impact of an Inpatient Portal: A Reflexive Thematic Analysis.JMIR human factors · 2024Article
- Sociotechnical Cross-Country Analysis of Contextual Factors That Impact Patients' Access to Electronic Health Records in 4 European Countries: Framework Evaluation Study.Journal of medical Internet research · 2024Article
- Experiences from patients in mental healthcare accessing their electronic health records: results from a cross-national survey in Estonia, Finland, Norway, and Sweden.BMC psychiatry · 2024Article
- A Nordic Perspective on Patient Online Record Access and the European Health Data Space.Journal of medical Internet research · 2024Article
- Psychiatrists' perceptions of conditions and consequences associated with the implementation of open notes: qualitative investigation.BMC psychiatry · 2024Article
- Perspectives from neuro-oncology providers on patient access to electronic records: a survey study.CNS oncology · 2024Article
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.