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.

Economic Outcomes in Patient-Centered Outcomes Research

“…Zhang and Meltzer 14 discuss their work in developing an integrated dataset of Medicare beneficiaries to better understand cost-related medication nonadherence. Moving beyond specific linked datasets to integrated data infrastructure, Bradley et al 15 and Waitman et al 16 provide overviews of efforts to link a state-level All-Payer Claims Database in Colorado with a cancer registry and strengthen PCORnet, the National Patient-Centered Clinical Research Network, respectively, to support the inclusion of economic outcomes in PCOR studies. The final article in this collection responds to this imperative, synthesizing the robust discussions among symposium attendees to arrive at a set of cross-cutting considerations to guide efforts to build data capacity and identify initial opportunities to expand the availability and use of relevant, high-quality economic outcomes data in PCOR 17…”