OBJECTIVES

Existing value frameworks have been criticized for not including the patient’s perspective. The objective of this study was to elicit the value elements in healthcare decision-making that are important to the patient community by directly engaging patients.

METHODS

The study included academic researchers, 3 patient stakeholder advisors, and 14 individuals from the patient community. Researchers identified value elements from existing value frameworks in the literature. Qualitative methods engaged the patients in value element a) elicitation, b) validation, and c) prioritization. In the elicitation phase, patient stakeholder advisors derived their own value elements, cross-referenced this with the elements from the literature, and defined the meaning of the element. In the validation phase, the patient community assessed the relevance and the clarity of the element phrasing and definition. In the prioritization phase, the patient community ranked each element as low, medium, or high priority.

RESULTS

Overall, 60 elements were derived from the literature and 34 were derived from the patient stakeholder advisors. In cross-referencing the patient-derived list with the literature-based elements, 47 were eliminated, 6 were re-phrased. The remaining 47 value elements underwent validation and prioritization. All value elements were endorsed. Nearly all prioritized ‘available treatment’ as high (n=13; 93%) and for the majority ‘conflict with religious beliefs’ was a low priority (n=8; 57%). Only 4 of the 47 value element definitions were recommended to be rephrased by ≥40%. Value elements spanned 11 domains: tolerability, personal values, social well-being, personal well-being, stigma, cost incurred by the patient, cost incurred by the family, accessibility of care/treatment, forecasting, healthcare service delivery, and disease burden.

CONCLUSIONS

This study elicited patient stakeholder perspectives on patient-driven value elements that can be further tested in existing value frameworks and in economic evaluations.