Epistemic Injustice in Patient-Reported Outcome Measures

Abstract

Patient-reported outcome measures (PROMs) were designed to give patients' own accounts of their symptoms and function a legitimate place in clinical evidence, correcting a long-standing overreliance on clinician-observed data. This perspective argues that the instruments built to serve this corrective function can themselves reproduce epistemic injustice, understood as harm done to a person specifically in their capacity as a knower. We distinguish testimonial injustice, in which a patient's scored self-report is discounted downstream based on their social identity, from hermeneutical injustice, in which fixed item sets and a validated vocabulary leave some experiences uncodeable in the first place. Drawing on recent work on contested illness, chronic pain, gendered symptom interpretation, and rare adverse-event reporting, we show how these two forms of injustice operate at different points in the
measurement pipeline, from instrument design through score interpretation. We conclude that participatory item development, periodic revalidation against patient testimony, and mixed-methods designs pairing structured scores with narrative supplementation offer the most promising route toward PROMs that are fair to the patients they are meant to represent.