Stakeholder-Engaged Derivation of Patient-Informed Value Elements.

Area of Science:

• Health Services Research
• Patient-Centered Outcomes Research
• Health Economics

Background:

• Existing healthcare value frameworks often lack patient perspectives.
• Patient-centered care necessitates incorporating patient-identified value elements into assessments.
• Understanding patient priorities is key to improving healthcare decision-making.

Purpose of the Study:

• To identify patient-informed value elements for patient-centered value assessment.
• To develop a comprehensive set of value elements reflecting patient priorities in healthcare.
• To inform the integration of patient-derived values into existing healthcare economic evaluations.

Main Methods:

• A mixed-methods approach using qualitative and quantitative data collection across four iterative stages.
• One-on-one discussions with 14 diverse patient stakeholders representing various medical conditions.
• Guided prioritization and refinement activities to identify and synthesize key value elements.

Main Results:

• Identification of 94 initial value elements, reduced to 42 through prioritization and refinement.
• The 42 elements were organized into 11 categories (e.g., tolerability, disease burden, cost, well-being) and 5 domains (e.g., treatment effects, access, cost, life impact).
• 75% of the final value elements were patient-derived and distinct from existing frameworks.

Conclusions:

• A robust set of 42 patient-informed value elements was established, enhancing patient-centeredness in healthcare value assessment.
• Recommendations are provided for tailoring, quantifying, and applying these elements in specific patient communities.
• This research offers a foundation for testing patient-informed elements in value frameworks and economic evaluations.