Patient-Centered Economic Outcomes
The 2019 law reauthorizing PCORI’s funding clarified that the research we fund should consider, as appropriate, the full range of outcomes, including costs and other economic burdens. To help guide our work in this space, PCORI developed through extensive engagement of patients and stakeholders the Principles for the Consideration of the Full Range of Outcomes Data in PCORI-Funded Research.
The Principles, and the engagement leading to their development, informed our framework for activity to contribute information on patient-centered economic outcomes to support patients', caregivers', and others' healthcare decisions.
Framework for Activities
Collection of the Full
|PCORI aims to ensure that the appropriate and relevant data on the full range of outcomes are identified and collected in PCORI awards||PCORI aims to help advance patient-centered approaches to the value conversation by supporting understanding of diverse perspectives on patient-centered value||PCORI aims to produce information that can support policy makers’ decisions|
|Refine PCORI guidance to applicants and awardees regarding types of burdens, costs, and economic impacts for potential inclusion in PCORI-funded research, and data sources||Develop and refine guidance for capture and reporting of specific types of potential burdens or costs consistent with a patient-centered perspective||Publish landscape review of current stakeholder statements, perspectives, and frameworks around value in health and health care||Engage patients and those who care for them to identify the components their community believes necessary in patient-centered value||Continue producing evidence products focused on emerging technologies and therapeutics||Build upon evidence synthesis capabilities to provide more timely information|
Assessing Costs and Other Burdens
PCORI encourages investigators to capture, as appropriate, the full range of outcomes in PCORI-funded research. Guidance for applicants may be found in PCORI Funding Announcements. In addition, PCORI is working to provide additional guidance to investigators to support their continued generation of authoritative, useful, relevant patient-centered outcomes and clinical effectiveness data that includes economic and other burdens.
PCORI asks all investigators to, as appropriate, identify, collect data on, and describe the full range of patient-centered and clinical outcomes relevant to patients and other stakeholders. These outcomes should include relevant costs and other burdens. PCORI asks applicants to outline the relevance of the cost or other burdens they will examine in their proposed research as applicable and to describe the approach they will use for capturing this information. As with results on other patient-centered outcomes, summary data on costs and other burdens will be available to the public in final peer-reviewed research reports published to the PCORI website.
Assigning Costs to Healthcare Utilization
This report is part of PCORI’s resources for the collection of the full range of outcomes in PCORI-funded research. It synthesizes findings from a focused review of the published and gray literature on the recommended approaches and commonly used practices for assigning costs to healthcare utilization.
Findings from this review can serve as a resource for analyzing and disseminating patient-centered costs that are relevant to patients’, caregivers’ and other stakeholders’ decisions about health care.
Patient-Centered Value in Health and Health Care
Patients are ultimate recipients of health care—and their experiences, goals, and expectations matter. Incorporating factors such as patient engagement, patient-important impacts, patient-driven outcomes measures, equity, and transparency into approaches to value is essential to improving the outcomes and experiences of patients in the healthcare system.
To foster greater understanding between and among patients and the broader healthcare community around this complex space, PCORI conducted a landscape review of diverse statements and perspectives on value in health and healthcare.
Patient and Stakeholder Perspectives on Value in Health and Health Care
Landscape Review and Summary
Perspectives on Patient-Centered Value in Health and Healthcare: A PCORI Stakeholder Workshop
Watch Main Session and Five Breakout Sessions
Considering the Full Range of Outcomes in PCORI-Funded Research
2021 PCORI Virtual Annual Meeting Breakout Session
Visit the Cost and Cost-Effective Analysis FAQs.
For questions about funding announcements, email [email protected].
Additional PCORI-Funded Projects
Dialogue on Achieving Patient-Centered Core Impact Sets
Developing a blueprint for stakeholders to development patient-centered core impact sets (PC-CIS), a patient-prioritized list of impacts on patients and families (e.g., career stress, out-of-pocket costs, work loss).
Designing Equitable Measures and Methods for Patient Priorities in Healthcare Value Assessment
Convening discussions among stakeholders to build consensus on how to define, collect, and use data that more fully represent the impacts on patients of disease and treatment options.
Defining Value and Supporting Equity in Sickle Cell Disease
Convening stakeholders to foster new partnerships and facilitate discussion around development of priority elements, methods, and engagement plans for value and equity in sickle cell disease.
Galvanizing Partners on Access, Affordability and Equity PCOR Opportunities
Developing a novel set of outcomes data, PCOR/CER priorities and project ideas to advance rigorous, person-centered evidence to identify and address financial and social needs of patients and families.
Defining Needs and Progress Toward Improving Methods in Value Assessment
Convening a forum in Washington, DC in February 2020 to consider current challenges and research gaps related to value assessment methods.
Posted: October 5, 2022; Updated: April 11, 2023
What's Happening at PCORI?
The Patient-Centered Outcomes Research Institute sends weekly emails about opportunities to apply for funding, newly funded research studies and engagement projects, results of our funded research, webinars, and other new information posted on our site.