The Patient-Centered Outcomes Research Institute (PCORI®) contracted with NORC to undertake a multi-step assessment process to consider data infrastructure enhancements to PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet® is a decentralized “network of networks” funded by PCORI® that is intended to improve the nation’s capacity to conduct health research, particularly comparative effectiveness research (CER), efficiently by creating a large, highly representative national network.

Participants include Clinical Research Networks (CRNs) and a Coordinating Center responsible for maintaining the research infrastructure. PCORnet is governed by a Steering Committee that includes Principal Investigators from the CRNs, patient partners, and representatives from the Coordinating Center. These partnerships allow researchers to query millions of clinical, claims, and registry records to support efficient, high-impact CER and clinical trials.

PCORI has identified three areas of interest for data infrastructure enhancements:

1. social determinants of health (SDOH) data;
2. patient-report outcomes (PROs) and other patient-generated health data (PGHD); and
3. improving access to Centers for Medicare & Medicaid Services (CMS) claims data.
   
   

PCORI contracted with NORC at the University of Chicago to assist in their planning process. This project entails a series of literature reviews, key informant interviews, webinars, and white paper development for each of three topics to provide PCORI a keen understanding of recent advances, gaps and opportunities. The project culminated into three reports that describe the current state of data collection in these topic areas across PCORnet CRNs and identify strategic investment opportunities.