After its emergence in the 1990s, evidence-based medicine (EBM) faced criticism for its emphasis on randomised controlled trials and meta-analyses, often at the expense of observational studies, expert judgment, and, crucially, patient values in clinical decision-making. Subsequent refinements sought to integrate research methodologies with recognition of patient values. These developments, while enriching EBM, have introduced complexities. In particular, the question of how these disparate forms of evidence and patient values can be integrated within EBM.
As part of an MRFF-funded initiative, our research investigated these challenges within the context of innovative stem cell interventions. We conducted interviews with patients/consumers, their carers, and families impacted by multiple sclerosis, osteoarthritis, and cerebral palsy.
Predictably, consumers rejected EBM's hierarchical evidentiary standards, asserting their values, preferences, and lived experiences should be definitive in guiding treatment decisions. More surprising, our participants claimed epistemic authority not only over the selection of treatments but also over the foundational epistemic requirements that inform those decisions.
We present study data illustrating how participants frame patient testimony in primarily epistemic rather than only ethical terms. Drawing on Miranda Fricker's concept of epistemic injustice and Elizabeth Anderson's standpoint theory, we argue that this claimed epistemic authority constitutes 'nosomathia'—laying claim to distinct knowledge acquired through lived experience of a medical condition. Accepting this claim would require evidentiary standards to be filtered through patient viewpoints. We consider the advantages and disadvantages of this framing and practical implications for the EBM paradigm and consumer engagement in clinical research and policymaking.