PCORI contracted with NORC at the University of Chicago to undertake a series of convenings to consider data infrastructure enhancements to PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet® is a large, nationally representative “network of networks” funded by PCORI to improve the nation’s capacity to efficiently conduct definitive patient-centered health research, particularly patient-centered comparative clinical effectiveness research (CER).
In alignment with PCORI’s National Priorities for Health, PCORI identified three topic areas for NORC to explore for enhancements to the PCORnet data infrastructure:
- 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.
These areas have potential to increase data capture, availability, and use across Clinical Research Networks (CRNs) participating in PCORnet and improve the conduct of patient-centered CER to address PCORI strategic research priorities and National Priorities for Health.
The project culminated in three reports that identify strategic investment opportunities for PCORI to consider in these topic areas, including enhancements to the PCORnet® Common Data Model (CDM), a standard for harmonizing and representing CRN data in a consistent format. If implemented, the enhancements could contribute to the Network’s ability to conduct definitive national studies that advance evidence-based approaches to improve health outcomes and health equity.
NORC used a multi-step assessment process to gather information for each topic. The methods employed included survey development and dissemination to health systems participating in PCORnet, interviews with key informants, and convening public webinars or roundtables. Key informants included a range of members from PCORI’s Board of Governors; CRNs participating in PCORnet; federal health agencies; non-governmental institutions; and subject matter experts in data infrastructure, claims data, PROs/PGHD, and SDOH that are external to PCORnet.
Expanding Social Determinants of Health Data across PCORnet® Clinical Research Networks
This report summarizes NORC’s findings on the current state of SDOH data collection across CRNs participating in PCORnet. The report details the challenges for expanding PCORnet infrastructure to increase SDOH data availability and accessibility within the networks and describes opportunities for enhancements to the PCORnet data infrastructure. The SDOH data considered include both individual level domains (e.g., housing instability) as well as geographic-level measures derived through linkage of address or geocode to publicly available indices.
Enhancing Data Infrastructure for Collection and Integration of Patient-Reported Outcomes and other Patient-Generated Health Data across PCORnet® Clinical Research Networks
This report summarizes NORC’s findings on the current state of PROs and PGHD collection across CRNs participating in PCORnet and details challenges and opportunities for expanding PCORnet infrastructure to increase the availability and accessibility of PROs and PGHD.
Expanding Access to Medicare and Medicaid Claims Data Across PCORnet® Clinical Research Networks
This report summarizes NORC’s findings on the current state of CMS claims data access across CRNs participating in PCORnet and details challenges and opportunities to expand access for CRNs participating in PCORnet, particularly for multi-CRN studies.