- The PCORI Strategic Plan
- Our Programs
- Our Vision & Mission
- Financial Statements and Reports
- The PCORI Strategic Plan
- Board of Governors
- Methodology Committee
- Authorizing Law
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- PCORI's Advisory Panels
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- Proposed New Methodology Standards for Usual Care as a Comparator (2023)
- Draft Key Questions: Systematic Review of Audio Care for the Management of Mental Health and Chronic Conditions (2023)
- Patient-Centered Economic Outcomes Landscape (2023-2024)
Past Opportunities to Provide Input
- Stakeholder Views on Components of 'Patient-Centered Value' in Health and Health Care (2023)
- PCORI's Proposed Research Agenda (2021-2022)
- Proposed National Priorities for Health (2021)
- Proposed Principles for the Consideration of the Full Range of Outcomes Data in PCORI-Funded Research (2020)
- Proposed New PCORI Methodology Standards (2018)
- Data Access and Data Sharing Policy: Public Comment (2017)
- Proposed New PCORI Methodology Standards (2017)
Comment on the Proposed New and Revised PCORI Methodology Standards (2016)
- 1. Standards for Formulating Research Questions
- 10: Standards for Studies of Diagnostic Tests
- 12. Standards on Research Designs Using Clusters
- 13: General Comments on the Proposed Revisions to the PCORI Methodology Standards
- 2: Standards Associated with Patient-Centeredness
- 3: Standards for Data Integrity and Rigorous Analysis
- 4: Standards for Preventing and Handling Missing Data
- 5: Standards for Heterogeneity of Treatment Effects
- 6: Standards for Data Registries
- 7: Standards for Data Networks as Research-Facilitating Structures
- 8. Standards for Causal Inference Methods
- 9. Standards for Adaptive Trial Designs
- Peer-Review Process Comments (2014)
- Draft Methodology Report Public Comment Period (2012)
PCORI’s recently published Landscape Review and Summary of Patient and Stakeholder Perspectives on Value in Health and Health Care provides a comprehensive resource to help inform ongoing conversations between and among all stakeholders on value in health care.
The landscape review is a first step in addressing the need identified by PCORI’s stakeholders for summary and analysis of the diverse perspectives from across the health sector on the complex topic of "value," to inform further dialogue on the topic. Based on 200 resources from close to 80 different organizations and communities across the US health sector, the review is also a unique assessment of the perspectives of the eight stakeholder groups identified for this purpose: patients and caregivers, clinicians, payers, purchasers, hospitals/health systems, industry, policy makers, and researchers/funders.
As the report documents, these perspectives can vary considerably. Patients tend to see value in personal terms defined by the costs, benefits, and experience of care, while other stakeholders favor a more economic definition based on outcomes achieved per dollar invested. We identified 48 separate attributes of value, of which just two—clinical efficacy and total healthcare costs—were included by all stakeholder groups. At least six of the eight stakeholder groups included the attributes of quality of life, survival, quality of care, safety, availability, equity, and productivity. This is a complex issue with definitions of value proving varied and highly contextual; they are informed by each stakeholder’s approach to and engagement with the health sector and other stakeholders.
Capturing these data around potential burdens and economic impacts ... will help inform decisions by providing a more complete picture of the implications of different options for patients and also for other stakeholders.Greg Martin Acting Chief Engagement and Dissemination Officer, PCORI
The report is part of a collection of activities initiated by PCORI in response to the clarification in its 2019 reauthorizing law, stating that PCORI-funded studies should capture “the full range of clinical and patient-centered outcomes, as appropriate,” including “the potential burdens and economic impacts” of healthcare services.
“Capturing these data around potential burdens and economic impacts, which include considerations such as time away from work, transportation, or childcare needs, will help inform decisions by providing a more complete picture of the implications of different options for patients and also for other stakeholders,” said Greg Martin, Acting Chief Engagement and Dissemination Officer. “These outcomes are in addition to the patient-centered outcomes and clinical effectiveness measures that have characterized the research PCORI has funded to date and will help provide a more holistic approach to patient-centeredness.”
PCORI’s overall approach to this expanded authority is guided by the Principles for the Consideration of the Full Range of Outcomes Data in PCORI-funded Research, approved in March 2021 by the PCORI Board of Governors. These principles, informed by and reflecting the voices of organizations and individuals, provide the foundation for specific guidance to applicants related to the capture of data on costs and other burdens to patients and are now included in all PCORI funding announcements.
We will continue to engage stakeholders, particularly around the critical theme of patient-centered value. A second report—based on key informant interviews, targeted convenings, and perspectives gathered through a September 2022 multi-stakeholder convening on patient-centered value—is expected to be released soon.
“Value in health is a complex, multi-faceted topic, and PCORI looks forward to listening and learning from its stakeholders about how we can continue to better inform conversations around patient-centered value in health and health care,” said Martin.
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.