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

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Abstract

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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Notes

  1. Note that Leidl and Reitmeir [36] show the results from an EB valuation developed in Germany; however, the outcomes of that study were individual visual analogue scale scores, with no anchoring to make the scores amenable to the estimation of QALYs. This implies that the scores in Leidl and Reitmeir’s value set should not be interpreted as quality weights for the computation of QALYs without further analysis.

  2. Note that EB value sets can also collect preference-based measurements, and can therefore be entered as utilities for QALY computations. We thus question the classification suggested in Leidl and Reitmeir [35] of value sets as either EB value sets or utility-based value sets.

  3. Italic added for emphasis (not in original).

  4. A modification of the TTO introduces a lead time of perfect health before the health state to be valued. The lead time approach is currently used for the valuation of health states considered worse than dead in the EuroQol EQ-5D-5L valuation protocol [51, 53]. The lead time implicitly delays the impaired health state to the future, so we could think that the new time frame is future. However, the construction of the lead time assumes an initial period of perfect health, what may not be the current health state of the respondent; thus the method is not postponing the start of the hypothetical scenario to be valued. Thus we will contemplate the lead time as part of the health state to be valued. This way the lead time TTO method will also be attached to a present to future time frame, as per the standard TTO. The implications of adding lead time to the health state valuation are beyond the scope of this paper.

  5. “MVH protocol” was coined in 1993 for describing the way values would be elicited from respondents in the UK first valuation exercise [32]. This protocol was replicated in subsequent valuation tasks. See Oppe et al. [51] for further detail.

  6. Note that the items can be interpreted in an affirmative or negative way. That is, when asking respondents to imagine that they will/won’t get the illness in the future, both questions address the same item personal experience, future.

  7. Adjusted for age, sex, education, social class and difficulty with rating task.

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Acknowledgements

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.

Author information

Authors and Affiliations

  1. Office of Health Economics, London, UK

    Patricia Cubi-Molla & Koonal Shah

  2. Department of Learning, Informatics, Management and Ethics, Stockholm Centre for Healthcare Ethics, Health Outcomes and Economic Evaluation Research Group, Karolinska Institutet, Stockholm, Sweden

    Kristina Burström

  3. Department of Public Health Sciences, Equity and Health Policy Research Group, Karolinska Institutet, Stockholm, Sweden

    Kristina Burström

  4. Health Care Services, Stockholm County Council, Stockholm, Sweden

    Kristina Burström

Authors
  1. Patricia Cubi-Molla
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Contributions

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.

Corresponding author

Correspondence to Patricia Cubi-Molla.

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Funding

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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Cubi-Molla, P., Shah, K. & Burström, K. Experience-Based Values: A Framework for Classifying Different Types of Experience in Health Valuation Research. Patient 11, 253–270 (2018). https://doi.org/10.1007/s40271-017-0292-2

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