Background
Healthcare researchers often concentrate on direct medical expenses like hospital bills, co-pays, and deductibles. However, patients and caregivers also face other economic impacts, such as transportation costs, ability to work, and behavioral health concerns.
The Innovation and Value Initiative (IVI) and AcademyHealth developed a framework to address patient-centered economic impacts in research studies and decision-making. Published after the completion of the first phase of the Economic Impacts Project, “A Research Framework to Understand the Full Range of Economic Impacts on Patients and Caregivers” provides guidance for researchers, funders, and decision-makers to consider what economic impacts are essential to include in research design.
With funding for a second phase of work, IVI aims to engage patients, caregivers, researchers, and other stakeholders in applying the framework in designing patient-centered studies. This two-year project will explore best practices for patient engagement and build the capacity to incorporate patient-centered economic impacts in comparative effectiveness research. Funding support is provided from the Eugene Washington PCORI Engagement Awards program, an initiative of the Patient-Centered Outcomes Research Institute® (PCORI®).
Project Objectives
The project aims to engage underserved communities in identifying economic impacts beyond direct medical costs that are important to patients. This is intended to drive a culture change towards patient-centered care, considering factors such as social impacts, job impacts, and transportation costs.
Approach
The project will center around interactive workgroup meetings, featuring best practices and activities that support the consideration of economic impacts in research.
Stakeholder Engagement Activities
IVI is forming a Steering Committee and a Community Advisory Group to get insights and recommendations from thought leaders and community members. If interested, please contact Melanie Ridley at melanie.ridley@thevalueinitiative.org.
Timeline
Additional Resources
- Phase 1: Economic Impacts Project Overview
- Phase 1: Project Announcement
- Economic Impacts Framework – Full Report
- Economic Impacts Framework – Executive Summary
- 2023 PCORI Annual Meeting Poster Session: A Framework to Understand Economic Impacts on Patients and Caregivers. Innovation and Value Initiative and AcademyHealth. October 2023.
- 2023 AcademyHealth Annual Research Meeting (ARM) Poster Session: Principles for Understanding and Measuring Economic Impacts on Patients and Caregivers. Innovation and Value Initiative and AcademyHealth. June 2023.
- Brown, D., Srinivasan, M., Zott, C., Wilson, K., Dullabh, P., and Smith, S. Medicare Data Linkages for Conducting Patient-Centered Outcomes Research on Economic Outcomes. Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services. September, 2022.
- Courtnay, C., Phillips, L., Masco, R., O’Hara Levi, S., Bright, J., Eller, J., Hyde, A., Kelly, M. and E. Malik (October 2021). “First-Hand Perspectives in Rheumatoid Arthritis: Insights to Improve Healthcare Research & Value Assessment.” Produced by the Innovation and Value Initiative.
- Khavjou O, Bradley C, D’Angelo S, Buell N, Giombi K, Honeycutt A. Landscape Review and Summary of Patient and Stakeholder Perspectives on Value in Health and Health Care. August 2022. Prepared by RTI International under RTI Project No. 0218249.005.
- Perfetto, E.M., Oehrlein, E.M., Love, T.R. et al. Patient-Centered Core Impact Sets: What They are and Why We Need Them. Patient (2022).
- Wexler, Nancy (September 2022). Measuring what matters: Learnings from the Person-Driven Outcomes Project. The John A. Hartford Foundation.
- Yang, G., Cintina, I., Pariser, A. et al. The national economic burden of rare disease in the United States in 2019. Orphanet Journal of Rare Disease 17, 163 (2022).