Stakeholder-Engaged Derivation of Patient-Informed Value Elements

Susan dosReis (), Beverly Butler, Juan Caicedo, Annie Kennedy, Yoon Duk Hong, Chengchen Zhang and Julia F. Slejko
Additional contact information
Susan dosReis: University of Maryland, Baltimore
Beverly Butler: SWATS, LLC
Juan Caicedo: Heritage Care Inc
Annie Kennedy: EveryLife Foundation for Rare Diseases
Yoon Duk Hong: University of Maryland, Baltimore
Chengchen Zhang: University of Maryland, Baltimore
Julia F. Slejko: University of Maryland, Baltimore

The Patient: Patient-Centered Outcomes Research, 2020, vol. 13, issue 5, No 8, 621 pages

Abstract: 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.

Date: 2020
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DOI: 10.1007/s40271-020-00433-8

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