Prioritizing PCORnet® Data Infrastructure Enhancements: Social Determinants of Health, Patient Reported Information, and Claims Data
| The comments submission period for this RFI is now closed. |
PCORI is issuing this Request for Information (RFI) to seek information from the PCORI research community related to the findings and opportunities to enhance the PCORnet® data infrastructure, based on a series of three recently published PCORI-commissioned discussion papers from NORC at the University of Chicago.
The three reports address the current state of data collection and potential enhancements to PCORnet focused on:
- Social determinants of health (SDOH)
- Patient-reported outcomes (PROs) and other patient-generated health data (PGHD)
- Centers for Medicare and Medicaid Services (CMS) claims data
The series of reports resulted from the PCORI-funded PCORnet Data Convening project.
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About PCORnet
PCORnet®, the National Patient-Centered Clinical Research Network (“the Network”) is a PCORI-funded initiative to develop and maintain infrastructure to enable patient-centered comparative clinical effectiveness research (CER) to be conducted more quickly, more easily, and more efficiently. In 2021, the PCORI Board of Governors approved a set of Prioritizing Principles for Infrastructure Funding Relating to PCORnet® to guide decision making about PCORI infrastructure funding for the next stages of PCORnet with a focus on enhancing Network capabilities for the conduct of definitive patient-centered CER.
Most recently, in 2022, the PCORI Board of Governors built upon the Prioritizing Principles by approving a set of crosscutting strategies to leverage PCORnet to advance PCORI’s National Priorities for Health and Research Agenda.
PCORnet is an integrated partnership of large Clinical Research Networks (CRNs) that is affiliated with more than 60 health systems connected to over 30 million patients in the United States. PCORI is the founding and primary funder of the PCORnet infrastructure. PCORI’s current funding of PCORnet is focused on using the infrastructure for large definitive studies that are national in scope. PCORnet infrastructure has facilitated numerous large trials and studies led by investigators from within and outside of CRN-affiliated institutions (e.g., ADAPTABLE; the PCORnet Bariatric Study; and COVID-19 Related Studies such as the HERO projects, ACTIV-6, the Centers for Disease Control and Prevention-funded COVID-19 surveillance project, and the National Institutes of Health-funded RECOVER initiative).
More About this RFI
Building on successful, demonstrated uses of the PCORnet infrastructure, PCORI is considering data infrastructure enhancements that build on the unique capabilities of the PCORnet data resources to facilitate patient-centered CER that supports PCORI’s National Priorities for Health. For this RFI, PCORI seeks input on which of the identified opportunities in each respective discussion paper are prioritized by members of the PCORI research community, particularly with respect to the unique capabilities of PCORnet®. Additionally, PCORI is interested in feedback on which opportunities the PCORI research community feels will best support PCORI’s National Priorities for Health, Research Agenda, and Strategic Plan. The information received will help inform PCORI’s strategy for assessing and prioritizing opportunities for future investment.
Posted: October 3, 2022; Updated: November 1, 2022
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