The Patient-Centered Outcomes Research Institute (PCORI®) contracted with NORC at the University of Chicago to undertake a series of multi-stakeholder assessments and convening 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 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.
The project culminated in three reports that describe the current state of data collection in these topic areas across PCORnet Clinical Research Networks (CRN), and identify strategic investment opportunities, including enhancements to the PCORnet® Common Data Model (CDM), a standard for harmonizing and representing data from participating in PCORnet®. If implemented, the enhancements could contribute to the ability of PCORnet Partners to conduct definitive national studies that advance evidence-based approaches to improve health outcomes and health equity.
Below are links to the White Papers that describe NORC’s findings in each of the three areas.