Project Summary

Background: There is no national dataset or resource that guides understanding of patient-centered economic outcomes. This creates a powerful disconnect between research that helps with understanding quality in care from the experience of patients. In one assessment on stakeholder perspectives of attributes of value, only one economic burden – healthcare costs – was identified as a priority for Hospital/Health Systems, whereas all but one (in a pre-defined list of attributes) were identified as priorities for Patients/Caregivers. This divergence of perspective underscores the importance of engaging patients and caregivers before a study is designed to ensure that it considers patient values.

Proposed Solution to the Problem: The Innovation and Value Initiative Foundation (IVI) is proposing a stakeholder engagement approach to build capacity for considering patient economic outcomes in patient-centered comparative clinical effectiveness research (CER) and value assessment. Through a series of workgroup meetings, IVI will partner with patients and other stakeholders in an iterative learning process to explore the knowledge, skills and resources that are needed to use the research framework report, “A Research Framework to Understand the Full Range of Economic Impacts on Patients and Caregivers,” to prioritize patient-centered economic impacts for consideration in patient-centered CER studies.

Objectives: The proposed project aims to build capacity of patients, caregivers, patient-centered CER researchers and other stakeholders to consider a broad range of patient-centered impacts, including economic impacts, in research. The project objectives include:

  1. Explore promising practices in patient engagement and use the research framework report to prioritize patient-centered economic impacts in patient-centered CER.
  2. Engage stakeholders in a series of work group meetings to explore the knowledge, skills and resources that support consideration of economic impacts.
  3. Drive culture change to orient health systems and researchers to patient-centered economic impacts beyond medical costs.
  4. Engage underserved and underrepresented communities as leaders in identifying priorities in patient-centered economic impacts.

Activities: IVI will engage a Steering Committee formed of multi-stakeholder perspectives to guide development of the project. A community advisory group of patients and caregivers will provide insight into the patient engagement strategies included. A series of work group sessions will be conducted for stakeholders that deliver training and foster dialogue.

Projected Outcomes and Outputs:

Short-term outcomes during the project period include: Increased awareness of and training on successful practices for multi-disciplinary partnerships, and learning reports that share training content and recommendations for adoption.

Medium-term and long-term outcomes include: Increased knowledge and skills in patient engagement in patient-centered CER, and stakeholders having strong familiarity with strategies to prioritize patient-centered economic outcomes measures in patient-centered CER.

Patient and Stakeholder Engagement Plan: IVI will engage past participants who helped inform the research framework in the Steering Committee and Community Advisory Group. In addition, IVI will seek to engage partners from other projects focused on patient-centered research. Each group will meet three to four times per year.

Project Collaborators: IVI will lead the development of the project activities. Project collaborators include the National Health Council and AcademyHealth, who will serve on the Steering Committee.

Project Information

Jason Spangler, M.D., MPH
Innovation and Value Initiative (IVI) Foundation
$250,000

Key Dates

February 2026
2023

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Last updated: April 3, 2024