Avenues for Strengthening PCORnet's Capacity to Advance Patient-Centered Economic Outcomes in Patient-Centered Outcomes Research (PCOR)

Abstract

PCORnet, the National Patient-Centered Clinical Research Network, provides the ability to conduct prospective and observational pragmatic research by leveraging standardized, curated electronic health records data together with patient and stakeholder engagement. PCORnet is funded by the Patient-Centered Outcomes Research Institute (PCORI) and is composed of 8 Clinical Research Networks that incorporate at total of 79 health system "sites." As the network developed, linkage to commercial health plans, federal insurance claims, disease registries, and other data resources demonstrated the value in extending the networks infrastructure to provide a more complete representation of patient's health and lived experiences. Initially, PCORnet studies avoided direct economic comparative effectiveness as a topic. However, PCORI's authorizing law was amended in 2019 to allow studies to incorporate patient-centered economic outcomes in primary research aims. With PCORI's expanded scope and PCORnet's phase 3 beginning in January 2022, there are opportunities to strengthen the network's ability to support economic patient-centered outcomes research. This commentary will discuss approaches that have been incorporated to date by the network and point to opportunities for the network to incorporate economic variables for analysis, informed by patient and stakeholder perspectives. Topics addressed include: (1) data linkage infrastructure; (2) commercial health plan partnerships; (3) Medicare and Medicaid linkage; (4) health system billing-based benchmarking; (5) area-level measures; (6) individual-level measures; (7) pharmacy benefits and retail pharmacy data; and (8) the importance of transparency and engagement while addressing the biases inherent in linking real-world data sources.

FIGURE 1

PCORnet distributed data architecture. CDM indicates Common Data Model; GPC, Greater Plains Collaborative; PCORnet, Patient-Centered Clinical Research Network.

FIGURE 2

PCORnet Clinical Research Network linkage process with Medicare Claims. CMS indicates Centers for Medicare and Medicaid Services; EHR, electronic health record; PCORnet, Patient-Centered Clinical Research Network.

FIGURE 3

Greater Plains Collaborative GROUSE architecture for claims integration leveraging CMS claims and Snowflake cloud-based data sharing. ACS indicates American Community Survey; CDM, Common Data Model; CMS, Centers for Medicare and Medicaid Services; GPC, Greater Plains Collaborative; HUD, US Department of Housing and Urban Development; PCORnet, Patient-Centered Clinical Research Network. Blue * indicate is the Snowflake database company's icon.