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Stakeholder-Engaged Derivation of Patient-Informed Value Elements

Author

Listed:
  • 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)

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.

Suggested Citation

  • Susan dosReis & Beverly Butler & Juan Caicedo & Annie Kennedy & Yoon Duk Hong & Chengchen Zhang & Julia F. Slejko, 2020. "Stakeholder-Engaged Derivation of Patient-Informed Value Elements," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 13(5), pages 611-621, October.
  • Handle: RePEc:spr:patien:v:13:y:2020:i:5:d:10.1007_s40271-020-00433-8
    DOI: 10.1007/s40271-020-00433-8
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    References listed on IDEAS

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    1. T. Joseph Mattingly & Julia F. Slejko & Eberechukwu Onukwugha & Eleanor M. Perfetto & Shyamasundaran Kottilil & C. Daniel Mullins, 2020. "Value in Hepatitis C Virus Treatment: A Patient-Centered Cost-Effectiveness Analysis," PharmacoEconomics, Springer, vol. 38(2), pages 233-242, February.
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    Cited by:

    1. T. Joseph Mattingly & R. Brett McQueen & Pei-Jung Lin, 2021. "Contextual Considerations and Recommendations for Estimating the Value of Alzheimer’s Disease Therapies," PharmacoEconomics, Springer, vol. 39(10), pages 1101-1107, October.
    2. Mark T. Linthicum & Susan dosReis & Julia F. Slejko & T. Joseph Mattingly & Jennifer L. Bright, 2021. "The Importance of Collaboration in Pursuit of Patient-Centered Value Assessment," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 14(4), pages 381-384, July.

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