When Patient Voices Get Lost in Evidence Hierarchies: A Testimony of Rare Adverse Events and Participatory Epistemic Injustice in Drug Safety Monitoring
Year: 2024
Type: article
Abstract: We explore an unsolved challenge in the era of evidence-based medicine (EBM): the recognition of the patient as an epistemic agent or ‘knower’. While patients are increasingly acknowledged as carriers of values and preferences, it seems more challenging to acknowledge them as carriers of important causal information. In contrast, the science of pharmacovigilance depends on patient testimonies as valuable sources of causal evidence. This incompatibility can give rise to cases of what has been called participatory epistemic injustice. We analyse the testimony of a chronic pain patient and co-author of this article, Christine. Christine gives an auto-ethnographic account of her interactions with healthcare professionals trying to find the right pharmacological treatment for her condition. Through the analysis of her own story, she identifies some relevant themes for the epistemic interaction between healthcare professionals and chronic pain patients. We argue that such epistemic interactions are increasingly shaped by EBM and its conception of causality, which devalues patient subjective testimonies and emphasises statistical evidence. We conclude that outlier patients face an inherent risk of being left vulnerable to participatory epistemic injustice, particularly regarding the discovery of novel, rare adverse effects of medicines.
Source: Social Epistemology
Authors: Rani Lill Anjum, Christine Price, Elena Rocca
Language: English
Subfield: Toxicology
Domain: Life Sciences
Open Access status: hybrid
OpenAlex ID: W4403074437