Experience-Based Values: A Framework for Classifying Different Types of Experience in Health Valuation Research

Patricia Cubi-Molla, Koonal Shah, Kristina Burström

Whether health values should be elicited from the perspective of patients or the general public is still an open debate. The overall aim of this paper is to increase knowledge on the role of experience in health preference-based valuation research. The objectives of this paper are threefold. First, we elaborate the idea of experience-based (EB) values under the informed value or knowledge viewpoint. We think the whole scope of knowledge about the health states involved in valuation exercises is not fully integrated in the previous literature. For instance, personal knowledge based on past experiences, contemplating the health state as a likely future condition, knowing someone who is currently experiencing the state, or just receiving detailed information about the health states; all these situations capture different nuances of health-related experience which are not explicitly referred to in valuation tasks. Second, we propose a framework where the extended factor of experience is detached from other factors interwoven into the valuation exercise. Third, we examine how experience is tackled in different value sets (EB or non-EB) identified via a literature review. We identified the following elements (and items) in a value set: health state (without description, described using a multi-attribute instrument, described using other method), reference person (the respondent; other person, similar/known/hypothetical), time frame (past, present, future), raters (public, representative/convenience; vested interest, patients/other) and experience (personal experience, past/present/future; vicarious experience, affective/non-affective; no experience). Forty-nine valuation exercises were extracted from 22 reviewed papers and classified following our suggested set of elements and items. The results show that the role of experience reported in health valuation-related papers is frequently disregarded or, at most, minimised to the item of personal experience (present)-linked to self-reported health.