Symposium 4: Patient-Centered Measurement: Perspectives from philosophy and health-related quality of life

Description

Patient-reported measurement is the idea that patient perspectives should play an evidentiary role in determining how effective a drug is taken to be, the degree to which a hospital provides good quality care or improvements in patient-clinician communication. This idea may sound prosaic, but in fact it’s nothing short of revolutionary. It says, patient views matter-not as an afterthought, and not only at the bedside, but in the nuts and bolts of creating our evidence base, and thus in health-care decision-making. But patient-reported measures present a puzzle: How can measurement, which relies on standardization, represent patient perspectives, which, if not idiosyncratic are at least various and changeable? This tension is explored in Patient-Centered Measurement (McClimans, L 2024, Oxford University Press) a recent book that combines philosophy and conceptual questions from HRQoL research. This symposium brought “all different together” four HRQoL researchers and four philosophers into dialogue with one another as they discuss their different perspectives on four chapters of this book.

The first chapter considers this tension from a HRQoL perspective. Some HRQoL researchers have argued that QoL research needs better theories of what we measure. This chapter argues that instead of better theories, we need better recognition of the values and uncertainty that are inherent to HRQoL research. The third and fourth chapters develop a theory of patient-reported measures that aim to resolve this tension. This theory is not a theory of HRQoL constructs but rather a theory about how patients, people with disabilities and other ill persons’ contributions should shape our understanding of HRQoL constructs. The final chapter considered in this symposium looks at a possible criticism of this theory. Patient-Centered Measurement champions the use of patient perspectives in defining HRQoL constructs to ensure these constructs are sensitive to patient needs. But what about pharmaceutical companies that use patient representatives to further their own economic needs? Do we need to be worried?

This symposium thus created a multi-directional dialogue: between HRQoL researchers and this text, between HRQoL researchers and other philosophers, and between the HRQoL community and philosophical concepts.

Period	15 Oct 2024
Event title	31st Annual Conference of the International Society for Quality of Life Research: All different together: Showcasing variety of QOL research
Event type	Conference
Location	Cologne, GermanyShow on map