MTL PhilSci Net | Conférence « Ethical and Epistemic Entanglements of Person-Centred Epidemiological Measures » – Leah McClimans, University of South Carolina

Mercredi 14 mars / Wednesday 14 March, 12:30 – 14:00
Leah McClimans, University of South Carolina
“Ethical and Epistemic Entanglements of Person-Centred Epidemiological Measures”
Institute for Health and Social Policy, McGill University, Charles Meredith House, 1130 Pine Ave W
Since the 1970’s epidemiological measures focusing on “quality of life” have figured increasingly as endpoints in clinical trials. Before the 1970’s these measures were known generically as functional measures or health status measures. Relabeled as “quality of life measures” they were first used in cancer trials. They were relabeled again in the early 2000’s as “patient-reported outcome measures” or PROMs in their service to the FDA to support drug labeling claims. In this talk I begin by examining the history of these measures. Although superficially similar to subjective measures of well-being, I will argue that quality of life/PRO measures have a different history. Importantly, quality of life/PRO measures grew in popularity due to two, post-World War II, trends in medicine: an emphasis on patient input and an emphasis on standardization. Policy documents, editorials, and articles in leading medical journals over the previous forty years illustrate the promise of these measures to marry input to standardization, and the tension inherent in this alliance. Particularly, scholars worry about the degree to which these instruments faithfully report patient concerns and/or quality of life. I will argue that this ethical concern is linked to epistemic concerns about the validity, interpretability and responsiveness of these measures. And, furthermore, we cannot get very far answering these epistemic questions without addressing this ethical one. Thus, I will suggest that researchers cannot put the ethical question to one side and move forward with the methodological and epistemic ones—as some have suggested is the case with subjective measures of well-being.