Stakeholder-Engaged Derivation of Patient-Informed Value Elements
Author
dosReis, SusanButler, Beverly
Caicedo, Juan
Kennedy, Annie
Hong, Yoon Duk
Zhang, Chengchen
Slejko, Julia F.
Date
2020-07-17Journal
PatientPublisher
Springer Science and Business Media LLCType
Article
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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.Sponsors
Pharmaceutical Research and Manufacturers of America FoundationIdentifier to cite or link to this item
http://hdl.handle.net/10713/13422ae974a485f413a2113503eed53cd6c53
10.1007/s40271-020-00433-8
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Except where otherwise noted, this item's license is described as https://creativecommons.org/licenses/by-nc/4.0