Conférence ”Ethical and Epistemic Entanglements of Person-Centred Epidemiological Measures”


Since the 1970s epidemiological measures focusing on “quality of life” have figured increasingly as endpoints in clinical trials. In this talk I begin by examining the history of these measures, which were later relabeled “patient-reported outcome measures” or PROMs. The ability of these measures to faithfully report patient concerns and/or quality of life has been contested for much of their history. I will argue that this ethical concern is linked to epistemic concerns about the validity, interpretability and responsiveness of these measures. I will suggest that researchers cannot put the ethical question to one side and move forward with the methodological and epistemic ones.

This content has been updated on 19 July 2019 at 17 h 25 min.