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.
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We acknowledge the feedback received on previous drafts from Nancy Devlin, Mike Herdman, Aki Tsuchiya, Mimmi Åström and three referees. Feedback from participants at the PROMs conference (Sheffield, Oxford) and the EuroQol Plenary meeting is also acknowledged.
PCM conceived and designed the study, with assistance from KS. PCM conducted the literature review. PCM led the data analysis and interpretation, with assistance from KS and KB. PCM led the drafting of the article, with assistance from KS. PCM, KS and KB all revised the article and approved the final version.
Compliance with Ethical Standards
The project is partially funded by the EuroQol Research Foundation (EQ project 2016460). The views expressed by the authors in this publication do not necessarily reflect the views of the EuroQol Group.
Conflict of interest
PCM and KS are employees of the Office of Health Economics, a registered charity, which receives funding from a variety of sources, including the Association of the British Pharmaceutical Industry. KB and KS are members of the EuroQol group, the developer of the EQ-5D instrument.
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