Visualizing the Complexity of the PCORnet® Infrastructure and Implications for Designing PCORnet® Studies

A national clinical research network such as PCORnet® must, by design, accommodate myriad approaches to support effective and efficient multisite and multinetwork research activities. Therefore, visualizing the architecture of clinical research networks is imperative to improve their utility for national scale research.

(1) To present a methodological approach to apply system mapping methods to characterize the key actors, relationships, and exchanges within the PCORnet infrastructure for data activities. (2) To describe the findings of the PCORnet infrastructure mapping project and characterize the commonalities and heterogeneity between CRN infrastructures based on their data management and sharing activities.

System mapping methods were applied in this paper to provide a more accurate and nuanced methodology to visualize the complex infrastructure provided by health research networks in order to support national-scale health research, specifically patient-centered comparative clinical effectiveness research (CER) using PCORnet.

To make PCORnet more accessible to investigators, patient partners, research funders, and other collaborators, the mapping methods and maps presented in this paper offer a new tool to visualize the design and architecture of the PCORnet infrastructure to fulfill distributed queries.

Critically, the methodology and approach to system mapping offer a new path forward to support Network collaboration as a learning health system (LHS) by improving transparency and dialogue with patient partners regarding the strengths and potential limitations of infrastructure for evidence generation and informing health care decisions.