Stakeholder-Engaged Derivation of Patient-Informed Value Elements
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ORIGINAL RESEARCH ARTICLE
Stakeholder‑Engaged Derivation of Patient‑Informed Value Elements Susan dosReis1 · Beverly Butler2 · Juan Caicedo3 · Annie Kennedy4 · Yoon Duk Hong1 · Chengchen Zhang1 · Julia F. Slejko1
© The Author(s) 2020
Abstract Objectives Our objective was to identify patient-informed value elements that can be used to make value assessment more patient centered. Methods Mixed methods were used iteratively to collect and integrate qualitative and quantitative data in a four-stage process: identification (stage 1), prioritization (stage 2), refinement (stage 3), and synthesis (stage 4). Qualitative methods involved one-on-one discussions with 14 patient stakeholders from diverse medical communities representing mental health, osteoporosis, blindness, lupus, eczema, oncology, chronic obstructive pulmonary disease, and hypercholesterolemia. Stakeholders completed guided activities to prioritize elements important to patient healthcare decision making. Responses were summarized descriptively as frequencies and proportions. Results Stakeholders identified 94 value elements in stage 1. Of these, 42 elements remained following the stage 2 prioritization and the stage 3 refinement. During the stage 4 synthesis, the 42 patient-informed value elements comprised the principal set of value elements that were organized by 11 categories: tolerability, disease burden, forecasting, accessibility of care/ treatment, healthcare service delivery, cost incurred on the patient, cost incurred on the family, personal well-being, stigma, social well-being, and personal values. The categories fell under five domains: short- and long-term effects of treatment, treatment access, cost, life impact, and social impact. Conclusions In total, 75% of the value elements in the conceptual model were patient derived and distinct from the elements used in existing value frameworks. Recommendations for tailoring, quantifying, and applying the patient-informed value elements in distinct patient communities are provided. This provides a foundation from which future research may test patient-informed value elements in existing value frameworks and economic evaluations.
Key Points for Decision Makers Value assessment framework recommendations call for improving value measures to better align with what is important to patients. Electronic supplementary material The online version of this article (https://doi.org/10.1007/s40271-020-00433-8) contains supplementary material, which is available to authorized users. * Susan dosReis [email protected] 1
Department of Pharmaceutical Health Services Research, School of Pharmacy, University of Maryland, Baltimore, 220 Arch Street, Baltimore, MD 21201, USA
2
SWATS, LLC, Manchester, MD, USA
3
Heritage Care Inc, Hyattsville, MD, USA
4
EveryLife Foundation for Rare Diseases, Washington, DC, USA
This paper presents patient-informed value elements that were developed with continuous patient engagement throughout the process. The work will advance the field of value ass
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