OBJECTIVES:

Researchers and decisionmakers have begun to recognize that economic impacts of serious health conditions reach beyond traditional measures of patient and caregiver costs. However, significant questions remain about how and when to include a fuller range of economic impacts in patient-centered research and in health technology assessment. This project aims to: 1) create a decision framework that defines “economic impacts on patients and caregivers,” 2) identify when economic impact data should be collected and for what purpose, and 3) highlight promising approaches to collecting economic impact data.

METHODS:

Following an environmental scan, an iterative stakeholder engagement approach, along with ongoing guidance from a 13-person steering committee, was used to develop the draft framework. Three engagement phases included: nine key-informant interviews, one roundtable discussion, and one consensus meeting, with emphasis on ensuring inclusion of patient/caregiver and research perspectives.

RESULTS:

Based on documented stakeholder input, a visual aid to represent the framework was developed. It consists of 6 categories: direct medical costs, non-clinical healthcare costs, social impacts, ability to work, education and job impacts, and caregiver impacts. Under each category, 7-18 examples of inputs are identified. Engagement Insights resulted in increased inputs (30 to 67) and domains (5 to 6), more person-centered language, and additional resources, such as patient journey map templates, glossary, and an expanded resource list. Emphasis on the intersectionality of economic impacts and health equity resulted in additional visual representations in the framework.

CONCLUSIONS:

The framework guides researchers and decision-makers to partner with patients and caregivers from the outset of any research study or project. Researchers can use the framework to gain insights on when and how to incorporate economic impacts into their study designs, and decision-makers can use the framework to ensure that a more robust range of economic impacts are included in health technology assessment.