A new article from the NORDeHEALTH project was just published in the Journal of Medical Ethics. The authors build on previous research on patients access to their health records, and argue that denying patients access can be seen as a case of epistemic injustice.
Even in countries that have implemented the practice of giving patients access, 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. The authors 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, they argue that patients are vulnerable to (oftentimes, non-intentional) epistemic injustice. Nonetheless, they 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.
Blease C, Salmi L, Rexhepi H, Hägglund M, DesRoches C. Patients, clinicians and open notes: information blocking as a case of epistemic injustice Journal of Medical Ethics Published Online First: 14 May 2021. doi: 10.1136/medethics-2021-107275