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

Bibliographic Data

ID9096512
AuthorsNikolas Koscielniak (0000-0002-9321-4387, Patient-Centered Outcomes Research Institute, Washington, District of Columbia, corresponding author), Stacey Chang (New Origin Studio, Austin, TX), Natalie Privett (New Origin Studio, Austin, TX), Erin Holve (0000-0002-6024-0415, Patient-Centered Outcomes Research Institute, Washington, District of Columbia, corresponding author)
Year2026
Volume64
Issue3S
PagesS223-S232
Publication date2026-02-01
Open AccessYes
TypeARTICLE
VenueMedical Care (JOURNAL)
Journal identifiersISSN: 0025-7079 • E-ISSN: 1537-1948
PublisherOvid Technologies (Wolters Kluwer Health) (PUBLISHER)
DOI10.1097/mlr.0000000000002234
PMID41504751
OpenAlexW7119509488
LanguageEN
Citations received1
References cited21

BACKGROUND: 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. OBJECTIVES: (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. METHODS AND DESIGN: 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. RESULTS: 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. CONCLUSIONS: 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

Health care · Healthcare system · MEDLINE · Path (computing) · Transparency (behavior) · Visualization · Electronic Health Records Systems · Health Policy Implementation Science · Interdisciplinary Research and Collaboration

  • PCORnet®

    Open Access•Erin Holve, Kathleen McTigue•Medical Care•2026

  • Steps Toward an Ecology of Infrastructure

    Susan Leigh Star, Karen Ruhleder•Information Systems Research•1996

  • Infrastructuring and Participatory Design

    Open Access•Jane Simonsen, Helena Karasti et al.•Computer Supported Cooperative…•2020

  • User requirements and understanding of public health networks in England

    D K Fahey, D Fahey et al.•Journal of Epidemiology and…•2003

  • Development of a Common Data Model for a Multisite and Multiyear Study of Virtual Visit Implementation

    Douglas W Roblin, Kevin B Rubenstein et al.•Medical Care•2023

  • Distributed Health Data Networks

    Jeffrey S Brown, John H Holmes et al.•Medical Care•2010

Citations per year1
Citation span2026 - 2026 (1)
Highly citedNo

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Open DOIOpen Access
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